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March 03, 2010

Always Something There To Remind Me

I thought I should probably dust off the blog and post an update for those of you who still faithfully check in from time to time. Ya’ll are loyal, yo.

Last summer at my two year post-diagnosis check up my oncologist told me that I could have my port taken out. I meant to, but then things like graduation, work, bar study, bar failure, new work, and more bar study got in the way. In January, I decided that the best thing to do was to get the surgery on the calendar for a date immediately post-bar when I knew I wouldn’t be working. So I did, and I had the surgery this past Monday.

I went back to the same hospital where I had my initial lumpectomy and so in a way it was like coming full circle. This was definitely a “good” surgery, and even the nurses and doctors were upbeat about it. It was also a fast one….I was wheeled into the very cold, very bright operating room at about 10:17 a.m. and I had just enough time to answer my surgeon’s question about my new job (see the next post!) before I was out. I opened my eyes in the recovery room a mere twenty minutes later at about 10:40 a.m. As soon as I was conscious enough, the first thing I did was reach up to my neck to feel…nothing. The tube that used to run from the port (which was implanted on the inside of my right breast opposite the tumor site on the left breast) and up to my neck as a kind of express track for the chemo was gone. My neck and upper chest were just like they were in April 2007.

I am now two days post surgery and I hardly know I had anything done. I will have a scar where the port was and there is some healing that needs to happen at the incision site, but I feel fine. The little bit of pain I have feels more like a bruise than a surgical incision. In fact, I plan to try to run tomorrow morning and go back to my regular weight lifting on Friday.

So that’s it. I am free of the port and of the last vestige of cancer treatments. No more running to the oncologist’s office for a port flush every six weeks, and no more odd disk in my chest.

It would be nice if that freedom was complete and allowed me to truly distance myself from 2007 and from breast cancer, but that will never happen. Although I don’t talk about it much on a daily basis (unless I’m asked about it), there isn’t a day that I don’t think about it. My scars, the constant numbness and weird pains in my chest, underarm, and back, are there every day. I see the lumpectomy scar and radiation burn and missing breast tissue every morning and every evening, and now I can add another scar to that litany. When I shop for a shirt, I have to try on each one that I find before I buy it to make sure the scars don't show when I wear it. Sometimes I buy one thinking that it covers everything and wear it only to discover a couple of hours later that it tends to slip down too low. It’s not that I worry about showing too much cleavage, but about showing too much scar.

For a long time when I would go to the gym I would change in the locker room like everyone else, but I was always terrified that someone would see all the scars and would be uncomfortable. I may try to look at my scars as battle scars, but there is something discomfiting for everyone when someone catches a glimpse of my misshapen and scarred breasts unexpectedly. I don’t feel this way about being around my family and friends in a bathing suit, for example, but the gaze of strangers is enough to make me feel as if I have a neon sign on my chest in the form of an arrow pointing directly to the glaring evidence of my ordeal. A few months ago, I finally gave myself permission to use the private changing rooms. It was such a relief the first time I changed in one of the rooms, because I no longer had to worry about inadvertently flashing my breasts at someone. (And as it turns out, I am not the only one who experiences this. I ran across this post by fellow breast cancer survivor Clergygirl the other day, eloquently describing exactly how I feel.)

The locker room isn’t the only place at the gym where breast cancer is on my mind. I can't always do push-ups or tricep work or chest presses properly because of nerve damage, and sometimes when I inadvertently lift too much weight my muscles let me know about it the next day, and not just because they are getting stronger. There are also a million other little reminders each day. I can't shave my left armpit in the shower with a razor, because I can't feel anything thanks to all the dead nerves on my left side and I would probably just cut it open. Sometimes I get an itch on my left side under my arm or in my back or along my left tricep, and I can't scratch it because I can feel the itch but not the scratch. At least once a week I wake up in the middle of the night because I have rolled into a position that is uncomfortable thanks to the lack of nerves in my back and side.

In spite of these reminders, the cancer is behind me. The battle scars are there, but mostly they just remind me that every day is a gift, all tied up with a big bow and just waiting for me to unwrap. I still never have a bad hair day…I am so thankful to have hair on my head. I never turn down food I like...I am so thankful to be able to taste it. I am constantly grateful for all the love and luck in my life…at least I am here and able to live it.

As a cancer survivor, you never forget that tomorrow could be the day you find another lump or bump or rogue cancer cell in your body. If I was diagnosed with cancer again tomorrow, I would have to get a new port installed in order to receive chemo that way. And that is a chance I am more than willing to take.

December 15, 2009

Frisk the 15th!

Do something for yourself this holiday season! Check those breasts! th_friskthe5copy4XSMALLa.jpg

November 15, 2009

Frisk the 15th!

Don't forget to check those breasts today! th_friskthe5copy4XSMALLa.jpg

October 15, 2009

Frisk the 15th!

Today is the day! Please make sure you do your self-exam today! th_friskthe5copy4XSMALLa.jpg

October 04, 2009

Bounce

So far there has been little about my law school experience that has been anything like the way most people do it. Most people don't start law school at thirty-nine years old with three children and a husband at home. Most people don't get diagnosed with breast cancer half-way through law school. Most people don't attend class bald and sick from chemo. Most people aren't lucky enough to land their perfect dream job before they even graduate from law school. And most people don't fail the bar exam. I, however, have now done all of those things.

When I first read the results online at the end of last week, I was in shock for a few minutes. I had to read the sentence over a few times and I felt a physical sinking of my stomach, my heart, and every other organ in my body as the news washed over me and began to sink in. When I left the exam last July I didn't feel as if I had aced it, but I certainly didn't feel as if I had failed it. I was (and still am) devastated. I immediately thought of the ramifications of this failure: I would lose my beloved dream job, I wouldn't have any way to pay my loans, I would have to prepare for and take it again.

As the shock of the initial news began to wear off, I felt (and still feel) a deep sadness and frustration. I worked so hard this summer and I did everything I was supposed to do...how could this happen? I was (and still am) embarrassed and humiliated at the thought of all the people I let down with my failure: my husband and kids who went through it all with me, my parents, my family and friends, the people who had enough confidence in me to hire me before I graduated, the people in my unit at work, and myself. While I always knew failure was a possibility, this was not the way I had planned it all out in my head.

One of the things I hated about having breast cancer (one of many!) was that I never wanted to be the poster girl for cancer. And yet when you are bald and sick, that's exactly what you are. I hated that role, and I was so happy when my hair grew back and when people I met didn't know about it unless I told them about it. This time I get to be the poster girl for a bar exam failer. At least I don't have visible signs this time, but I am still reluctant to have to take on a role that I would never have chosen on my own.

I wasn't sure how to share this information, but in keeping with my recent tradition of over-sharing the difficult parts of my life, I decided that maybe the best thing to do was to just own this and put it out there. I know I'm not the last person who is going to go through this, so maybe if I just go ahead and write about the experience here it will be cathartic for me and maybe someone else will find it and know that they are not alone.

So now I'm just trying to figure out the best way to bounce. The next step, just like with a cancer diagnosis, is to figure out what to do next. Not being one to take to my bed and pull the covers over my head, in between crying bouts I have updated my resume, cleaned out my desk at work, and signed up for the February test. I don't know what tomorrow holds, but I keep telling myself that this could be worse. At least it's not a cancer diagnosis! Failing the bar isn't going to kill me, even if it does feel like I want the earth to open up and swallow me right now.

I keep comforting myself with a growing list of people who failed the bar and who have all gone on to be successful and to do some great things: Hillary Clinton, Michelle Obama, both Daleys (father and son), several fantastic attorneys who I know personally, John Kennedy, and one of my favorite law school professors, just to name a few. That is not such bad company.

September 15, 2009

Frisk the 15th!

When was the last time YOU did a breast self-exam? Do it today! th_friskthe5copy4XSMALLa.jpg

August 15, 2009

Frisk the 15th!

It's almost time for school to start...add a breast self-exam to your list of things to do to get ready! th_friskthe5copy4XSMALLa.jpg

August 04, 2009

And...That's A Wrap

Okay, okay…I hear you Gentle Readers. Thank you to those of you who have been sending me little nudges, wondering if and when I might pick up my pen (or keyboard) again. I am amazed that you are still reading, and I appreciate your tenacity and dedication. Now that I don't have any more breast cancer or law school to write about, I don’t quite know where this blog is going to go, but I’ll start with this:

In the five years since I started writing this blog, among other things, I have started law school, turned 40, been diagnosed with and fought breast cancer, won $10,000, lost all my hair, grown it all back, finished law school, gotten a job, graduated from law school, and studied for and taken the bar exam. Other than the breast cancer part, that’s pretty much how I was hoping it all would go. Tomorrow I start a brand new chapter, and this time it is much less predictable than the law school chapter was.

I am so lucky to have been offered and accepted what is essentially my dream job. I’m going to be doing exactly what I have wanted to do since the end of my first year of law school in the place I want to do it. Considering the economy and the dismal legal job market, I am very fortunate to have this job.

Almost exactly fifteen years ago I happily gave up my briefcase and heels and a career in the mortgage industry for a diaper bag and jeans and a career as a stay-at-home mom. It was my favorite career decision so far and I have loved every second of the job. Okay, maybe not every second, but I have loved a lot of them. I would not trade the time I have been able to spend with all three of my kids for anything. I think that my decision to stay home was the right one for my family and for me. However, I always knew that it would come to an end for several reasons. I knew that we would need my additional income in order send them all to college and to retire comfortably, and I also knew that there would come a time when my kids would be ready to leave and to go out on their own. I realized that when that happened, I would want something of my own, something that I enjoyed and that I could devote myself to the way I have devoted myself to them all these years. That thing turned out to be a career as an attorney, and here I am on my way.

Today is my last day as a stay-at-home mom, and I have mixed feelings about it. Of course, I am excited about my new job and about the income that comes along with it. I love the work that I will be doing. But at the same time, I am sad at the idea of leaving this era behind. I think back to the days that sometimes seemed so long that were filled with runs to and from preschool or swimming lessons or gymnastics, trying to work around naptime, shows like Gullah Gullah Island and Sesame Street, and reading the same book 10,000 times. It seems like just yesterday that I was filling up the kiddie pool in the summer or bundling little arms and legs into snowsuits to go sledding.

It is inevitable that your kids grow up and get older and that your life changes in the process, but there is something so bittersweet about leaving those days behind. I love the people my kids have turned and are turning into; I am continually amazed at how incredible they are and at how lucky I am to get to be their mom. I am always excited to see what they are going to do next. But I can’t ever quite forget the little people that they used to be, and there is a part of me that feels as if when I step out the door tomorrow morning, I will be leaving those little people behind forever.

July 15, 2009

Frisk the 15th!

It's the 15th of July...how are your breasts doing? Check them and find out! th_friskthe5copy4XSMALLa.jpg

May 15, 2009

Frisk the 15th!

Spring is here...spring into action by doing your monthly breast self-exam! th_friskthe5copy4XSMALLa.jpg

March 12, 2009

Obsession (or The Hair Chronicles, Part 562)

I am obsessed with hair. I have spent more time in the last year and a half thinking, talking, worrying, and writing about hair than I ever thought that I would. I’m sure that this is just another one of those unexpected cancer side-effects, and I wonder how long it will last.

I am amazed when I think about all the different hair styles I have had in the last year and a half, many of them chronicled by photos on this blog. My hair has been long-ish, light blonde, dark blonde, shoulder length, chin length, short, crew cut, shaved, gone, curly, wavy, and straight. My closets and drawers are overflowing with wigs, hats, headbands, barrettes, elastic bands, and scarves. The cupboard under my bathroom sink is chock full of shampoo, conditioner, gel, mousse, pomade, serum, and hairspray for blonde hair, long hair, baby hair, short hair, straight hair and curly hair. My hair has had an identity crisis.

While I was going through the process of losing, mourning, and growing my hair, I wrote here about how I noticed everyone’s hair more than I ever did before. One of the first things I noticed about people when I didn’t have any hair was the color, texture, length, amount, and style of theirs. It is still one of the first things I notice, even though I have more of my own.

My hair started to come in a little straighter at some point in the last few months, until it began to drive me really crazy. I had straight/wavy hair on top and curls on the bottom, and I couldn’t do anything except put it back in a headband every day. I finally made an appointment with my hairdresser, took in an old picture of my hair circa 2006, and asked her if she thought we could make that happen now. She washed and highlighted and snipped and razored, and my hair now resembles my old hair. I have to straighten it each morning to get the ends to match the rest of it, but it is my hair. I kept trying to appreciate the curls while I had them, but all I really wanted was to have my old hair back.

Now I spend a lot of time touching it, running my hands through it, and reveling in the feeling of it blowing in the wind. I still have a “bad hair day” from time to time, but I find that I’m not as concerned about that as I once would have been. I have hair, and that is enough.

I was showing someone at work pictures of my family last week and we came upon pictures of me from two years ago. My hair was shoulder length and bright blonde back then, and he was taken aback by the image. I thought about it later, and realized that he has only ever known me with dark blonde super-short and curly hair—he never thought of me as a blonde with long hair. My cancer experience is so much a part of me that it is hard for me to imagine that people who are just meeting me for the first time now have no idea. They don’t know how it has changed me, because they didn’t know me before the diagnosis. They don’t think of me as “Kim who had breast cancer” because they only know me as “Kim.”

But when I think about myself now, I almost always think about my cancer experience. It is as much a part of me as the descriptors of “mom” and “law student” and “short.” I am surprised by that, and by my inability to escape it. When I was in the middle of treatment, I dreamed about the day that it would be over and that I could stop thinking about it. I am finding that even when the treatment is over, however, it isn’t something that is easily forgotten. And just as I am getting used to my new hair, I am still getting used to a new world order that includes my identity as a cancer survivor.

Pictures of the current hair style to come soon….

February 15, 2009

Frisk the 15th!

There's no better way to beat the winter chills than by doing your monthly self-exam! Today is the day!
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January 18, 2009

I Think This Makes It More Than Fifteen

I have volunteered to be a Breast Cancer 3-Day Ambassador again this year and last week the event publicist I have been working with asked me if I wanted to appear on NBC5’s Sunday news show as a spokesperson. I hesitated at first because it meant a very early drive into the city, but Randy convinced me to go for it with a promise to accompany me. As it turned out, when they knew he was going to be with me they wanted to interview him, too, so we both got some camera time.

The last time I did this was in August just before the walk. That day was warm and sunny, and we didn’t have to be at the studio until 8:45 a.m. This time we had to be there at 5:45 a.m., and there was no sun or warmth to be found as we headed downtown at 4:30 a.m. We parked relatively close to the NBC studio, but it was still a cold, dark walk through the all but silent and deserted city streets this morning. We sloshed through icy slush and stepped carefully over treacherously snow-covered sidewalks to get to the same “secret door” we entered last August.

Just like last time, we waited in the NBC “greenroom” with the other guests (a “fashion expert and author” and a representative of Hawthorne Mall) and some NBC staff members until it was time for us to go on. In August, the anchor (Ellee Pai Hong) came to talk to us before the interview, but this time we were on our own until it was time for us to walk to the news desk area and take our seats. As we rounded the corner from the backstage/control area to the studio area, we saw three tall chairs set up directly across from the news desk surrounded by several cameras and lights. An employee told us to choose a seat as she pointed us toward the chairs. As soon as we were in the room, everything began to speed up. Alex Perez, the anchor who interviewed us this morning, walked over to where we were sitting, sat down on his chair, and started reviewing his notes and asking me questions about myself and the walk. At the same time, crew members miked Randy and me. The woman who was miking me was obviously frustrated with the tangled cord of my mike, and she was still desperately trying to untangle it as the countdown to on-air began. She got it untangled and clipped on, and then another crew member ran up to re-tuck the front of my shirt just before the cameras started rolling.

As it did in August, the interview itself went very quickly and I hardly remember what Alex asked or what I answered. I do, however, remember the wrong answer I gave when he asked me about registering for the walk now. I told him it was a good idea to register now because it takes six to eight months to train and fundraise for the walk, but I was supposed to say it takes four to six months. Oops!

Here is a link to a video of the interview on YouTube. It was recorded from a TV so it's a little fuzzy but you can get the idea. If you are thinking about participating in the Breast Cancer 3-Day here in Chicago or anywhere else, it is a good time to register. If you are in Chicago and would like to join The Chest Nuts, we would love to have you. Randy and I will be crewing rather than walking this year, but it sounds like quite a few of The Chest Nuts will be walking again. You can join our team by clicking on the link on this page. You can also find out information about the walk in other cities from that page. And if camping isn't your thing and you would rather just make a donation, you can do that, too.

January 15, 2009

Frisk the 15th!

Today is January 15th! It's not too late to resolve to do a monthly breast self-exam...just make sure you start today!
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January 06, 2009

A Few More Minutes

And in the New York Times, no less.

Update: As far as I can tell, the story will be in the print copy on Thursday, January 8th on page E6.

Update: There is an audio interview, too. To listen to the audio, just look on the left hand side of the screen right under the picture in the article. You will see a box that says "Multimedia" with a play button and my name just underneath that. You can listen to me, then Dave Shack, and then just let it loop and listen to us both over and over and over again. Just what you want to do, I know. :)

December 18, 2008

Give Me A Head With Hair

The winding drive leading to my oncologist’s office is about a quarter of a mile long and is lined with stately old oak trees. In the summer, it is cool and green and shady under the oaks. In the winter, the snow lies on the ground beneath the thick black trunks and the bare branches stand out starkly against the cold white sky. But it doesn’t matter to me what it looks like, because as I drive under the oak trees toward that familiar parking lot and building all I can feel is a sense of heaviness. As kind as the nurses and doctors are in that office, I hate going there.

I was there last Monday for another check up and a port flush. It has been a year since my last chemotherapy treatment and three months since my last visit. I was pronounced “perfect” by my oncologist, which is good news. But to get that news I had to walk down the hall to his office, and the carpet and the chair rail and the pictures in that hall all make me feel bald and sick. His waiting room was so crowded with cancer patients that there were only two seats left. I chose the one next to a sad man with teary red eyes who stared at the floor while he waited for his name to be called. I never let myself notice when I was waiting in that room last year what a sad place it is. It is full of cancer patients, but they are not the ones who are sad. It is their family members who fill the room with sadness.

After I see the doctor, the receptionist ushers me back into the chemo room for my port flush. Once there, she leaves my chart for the chemo nurses and invites me to choose a seat. I am always relieved that I will only be in that seat for the mere minutes it takes to flush my port instead of the hours it takes to receive chemotherapy. The office was behind schedule on Monday so I had to wait for longer than usual for a nurse to get to me. I found myself becoming more and more agitated and nervous as I sat in that green vinyl chair, facing the familiar ring of other green vinyl chairs, each one accompanied by the ubiquitous IV pole and containing either a clean pillow or a patient. I had time to think about where I was and I had time to remember and to dread the thought of having to go back there. I thought that by this time I would be far enough beyond my diagnosis and treatment that these visits wouldn’t bother me, but so far that hasn’t happened. It makes me wonder whether it ever really goes away, or whether it will always be there just under the surface. It is always surprising to me that just being in the oncologist’s office can make me feel this way.

Despite the cold temps here in Northern Illinois this December, I have yet to put a hat on my head. The thought of putting something on my head is so distasteful to me, and the few times I have picked up a hat in order to wear it outside I have felt that old familiar repulsion and phantom nausea. It’s going to be a long, cold winter if I am unable to cover my head, but that’s just the way it’s going to have to be.

The good news is that my head…and therefore, me…is much, much warmer this year than it was last year. Here is my most recent hair chronicle picture.
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The curls are driving me crazy because they do whatever they want to do and refuse to take any kind of direction from me. My new hair is coming in less curly and more wavy. I have worn it straight a few times and when I do Matthew tells me I look like the “old” mom.
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I try not to complain too much about my hair, though. After all, there can be no such thing as a bad hair day once you have had a no hair day.

December 15, 2008

Frisk the 15th!

It's the 15th of December already! Take a break from your holiday preparations to do your monthly self-exam!
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November 15, 2008

Frisk the 15th!

Yep, it's that time again! Check those breasts!
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October 17, 2008

This Time Last Year

On October 17th of last year, I was getting myself mentally psyched up for my seventh (and second to last) chemotherapy treatment. I was in the middle of the blog scholarship contest, and you were all lifting me up with your encouraging words and your thousands of votes.

Yesterday I got an e-mail letting me know that it was that time of year again. This time around, things are different--I have hair and I feel great, and there won’t be $10,000 waiting for me at the end of the month. Nonetheless, it is time for the 3rd Annual Blogging Scholarship Contest from CollegeScholarships.org. The entrance requirements are as follows:

• Your blog must contain unique and interesting information about you and/or things you are passionate about.
• U.S. citizen or permanent resident;
• Currently attending full-time in post-secondary education in the United States; and
• If you win, you must be willing to allow us to list your name and blog on this page. We want to be able to say we knew you before you became a well educated, rich, and famous blogging legend.

If you fit the criteria, why not enter your blog? If you know someone who does, let them know about the contest! It is well worth it, and I can’t wait to see who wins this year. I will post again when the finalists are listed.

October 15, 2008

Gettin' Frisky With It!

It's October 15th...time to do your monthly breast self-exam!
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September 15, 2008

Frisk the 15th!

Today's the day...make sure you do your monthly breast self-exam!
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September 09, 2008

10 Months Later...

And just so you can see the dramatic difference, here is a recent picture of me ten months later...with hair!

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Speaking of Pictures...

During the course of the blogging scholarship contest last fall I received hundreds of e-mails from all over the world. Many people wrote to offer their support, but many wrote to share their breast cancer and other cancer stories and experiences with me. I heard from other mothers in law school, other bloggers, the mothers of friends, and friends of friends.

One day a woman contacted me who was the friend of a friend of my mother-in-law who also just happened to be a photographer. She said that she wanted to help me see my baldness in a different light and she proposed the idea of doing a photo shoot. She wanted, she said, to allow me to see myself the way that others saw me. I thought that I was already doing that. But despite some trepidation at having my picture taken with no hair, I agreed. She lives in Madison, Wisconsin, which is where Randy’s parents lived at the time, so one day a couple of weeks later we all jumped into the car and headed up to their house.

Jackie, the photographer, uses natural light in her photographs and came armed for bear with her camera and various screens which she set up all over the house and yard. She took shots of all of us together, some of me with each of the kids, and some of just me. She was so nice and made us all feel very comfortable as she shot picture after picture of all of us. I liked her immensely and I felt like I had known her for years rather than just for a couple of hours by the time she left. After she was done, I thought about how generous she was to give me such a great gift. At the same time, I wasn’t sure that I really wanted to see the photos because I wasn’t sure how I would feel. I could hardly look at myself in the mirror, and I didn’t really know if I wanted to look at permanent images of myself as a cancer patient. I thought that it was something that I might be glad I did after a few years had passed, but I didn’t really know for sure.

A week or so later Jackie sent some proofs to me via e-mail. The pictures were stunning, even though it was quite difficult for me to look at them. I was excited to see what she was going to do with them from there.

The craziness of the holidays came and went and suddenly I was in the middle of a busy spring semester and soon I forgot about the pictures. Life caught up with Jackie, too, and a few big projects came up for her and both of us let the pictures fall by the wayside.

Last month, just before I left for the 3Day, I received an e-mail from Jackie with the completed pictures attached. It was completely unexpected and I was a little nervous about opening the files. I didn’t know how I would react and I wasn’t sure that I wanted to see any images of myself as I looked in the middle of chemotherapy.

I opened up the files, however, and found myself speechless and in tears. The images of my family were beautiful. Jackie is truly an artist and did a wonderful job with the photographs.

The more I looked at them, however the more I realized what an amazing gift she had given me. She had succeeded in doing something that I didn’t think was possible because I didn’t believe that there was something that I couldn’t see. When I looked at Jackie’s photographs, for the very first time I saw myself in a completely different way than I did when I was actually bald.

Looking at those images of myself was quite an amazing experience, actually, and I think that is because when I didn't have hair there was absolutely no way I could see anything but that. It felt so awful...it really was one of the most difficult things psychologically that I have ever experienced. The whole time I was dealing with it--and even still today--people would tell me that I looked good, that I could pull off the bald look, that I looked so much better than I thought I did. Those comments made me feel better and I appreciated the thought and feeling behind them so much, but now I realize that I never, ever believed them. I was certain that people were just saying that to be kind and supportive. When I look at these pictures, for the very first time I can see myself the way everyone else saw me. I can see ME. I can see why they thought I was so strong and bold to be able to do the bald thing.

I hated having no hair. It was so painful and difficult and yet I can't even see that when I look at these images of myself and my family. Even while Jackie was taking the pictures I felt so self-conscious and I don't think I believed even then that I would actually like them or that I would really be able to see anything different from what I saw in the mirror every morning. And yet, I do. I see it now.

My cousin Jenny shaved her head a couple of weeks ago and posted some pictures of herself on her blog. When I first saw the photos, I was immediately struck by how beautiful she looks. She looks just like the gorgeous cousin I’ve known for 30-some years. Although she doesn’t have hair, I only see Jenny when I look at her. Now I know that is exactly what everyone else saw when they looked at me, but I didn’t realize it until I saw these pictures.

I won't be shaving my head tomorrow, but I am deeply grateful to Jackie for showing me to me.

If you are anywhere near the Madison, Wisconsin area and need a photographer, you can find Jackie’s contact information on her website at www.studioqonline.com. She does amazing work, as you can see below, and I highly recommend her!

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August 18, 2008

Through The Looking Glass

Apparently each member of my immediate family is walking around with a big “V” tattooed on our foreheads these days. That’s “V” for victim. Karly’s car was hit with paintballs two nights in a row last week and Randy woke up last Wednesday to find that his car had been broken into during the night. The thief/thieves took his iPod and wallet and he spent the morning cancelling credit cards and talking to the police. My story of victimization, however, takes the cake.

I woke up Thursday to an e-mail from a stranger entitled, “Your pictures have been posted on a porn site…thought you’d like to know.” At first I was convinced that it was just a spam ploy to get me to click on the link enclosed in the e-mail to visit a porn site, but as I re-read the message it began to ring authentic. The message stated that there was a user on this particular website who had been claiming to have cancer. When other members questioned the veracity of her story, she posted bald pictures of herself in her site profile in order to “prove” that she was going through chemo. Several other members did a quick Google search and discovered my blog and posted the link on this porn website as proof that the pictures did not actually depict the user who was claiming that they were her. One woman followed the link, found my e-mail address, and sent me the e-mail.

I checked out the site but discovered that in order to access anything there you had to be a registered user. I was able to find an e-mail address for the site owner, however, so I sent an e-mail asking them to investigate these claims and to remove any pictures of me. As I thought about it some more, I became curious and decided to just go ahead and register for the site. Once I was officially a member of this porn site (I’m not going to post the link here, but if you want to know which one it is e-mail me and I’ll send you the link.), I began looking around. The members of this site can create a blog within the site and it only took me a couple of seconds to find this woman’s blog. She had removed the pictures by the time I visited, but I was able to read the posts on a thread where other members accused her of stealing the pictures and her responses to those accusations.

I immediately sent an e-mail to two attorneys I know who I thought might be able to give me some guidance as to how to handle this situation and then I went about my day. When I was finally able to get back to the computer later in the afternoon, I discovered that the woman’s blog was gone from the site as well as all the posts about my pictures. I discovered another blog, however, where people were talking about this and I decided to go ahead and post a response. In my comment, I talked about the fact that I am not this woman, that I never gave her permission to use my photos, and I suggested that she contact me if she was reading this and that I could give her some links to actual cancer support groups. I also wrote that there were probably better places for her to look for cancer support than on a bondage/s&m website message board.

I documented everything that was still available on the site with screen shots and then I called the police. The officer who came out documented my story, though he didn’t actually file a report. I hoped that would suffice if I needed to subpoena records from the website at some point.

I am grateful to the woman who contacted me, because I would never have known about this if she hadn’t told me. She said that her mother died of cancer and she was therefore disgusted that this woman was using pictures of me with no hair and claiming them as her own. She also offered to let me know if she spots any more photos of me.

And then some interesting things began to happen. Other users of the site began to post angry messages on the blog directed at me. They thought that the fact that I had suggested that this woman look for cancer support somewhere other than this website was my “small-minded” way of saying that the members of this website were somehow bad or flawed and that they couldn’t possibly support someone in need. These people were furious with me and let me know it in no uncertain terms, but I felt that their defensiveness was an over-reaction. In fact, one of the members apologized for the perceived “rudeness” of some of the posters and suggested that they were defensive because the bdsm community is not generally well-received. I returned to the blog again to posted a comment explaining that I didn’t mean to disparage the people on the site in any way and that I was sure they had as close-knit and supportive a community as any other on the internet, and that my intent was really just to offer cancer support resources to the woman who started all of this.

The following morning when I checked my e-mail, I had a message waiting for me from the woman who posted the pictures. She apologized for what she had done and noted that she had retracted her claims and that she had taken the pictures off her site. I wrote back to her, accepted her apology, and told her that as far as I was concerned this was all water under the bridge. I said that I understand that we all make bad decisions sometimes and that we really just have to try to move on from them after the fact. I also offered to share my cancer support resources with her if she needed them. She replied with some very kind words and stated that she was not yet feeling brave enough to explore any cancer support resources.

The most amazing part of this, however, is the number of private e-mails I have received from other users of this website over the past two days. Quite a few people wrote to me to tell me about their mothers or grandmothers or friends who have or had breast cancer. All of these women said that they had clicked on a posted link to my blog out of curiosity and then they started reading my story and apparently it resonated quite strongly for many of them. I find it astounding that out of all of this, a group of women that I would probably never have come into contact with have been moved by something that has happened to me. The internet certainly makes the world a smaller place, doesn’t it?

There is also a lesson here, of course, and that is that you have to be very cautious about what you put out there on the internets. There are a lot of crazy people out there, and unfortunately we take a risk when we open ourselves up to them the way that I have. I knew when I first decided to post pictures that I ran the risk of something like this happening, but I certainly never thought it would happen to me. I plan to leave my pictures up and easily accessible on this blog, but I will be removing the pictures of my kids so that there is no danger of something similar happening to them. (If I have posted a picture of you at anytime and if you want me to remove it from my blog, please let me know.)

August 17, 2008

2008 Chicago Breast Cancer 3Day

Last weekend was the Breast Cancer 3Day and it was an amazing experience. It was everything that people had told me it would be…and more. I have been reluctant to sit down and write about it because I don’t think I can possibly do it justice. I can say that if you have the opportunity to take part in this kind of event, you should definitely do it!

The first day we walked along the North Shore, through the Botanic Gardens and then down Sheridan Road along the lake. We covered 21 miles that day and ended up at our camp site in Des Plaines. My sister had some trouble at the end of the first day, so she and I spent most of the evening in the medical tent while she was hooked up to an IV. Once she was feeling better, we headed to our tent where we got little sleep thanks to the noise from the busy road 100 yards or so from our heads.

The showers are contained in six 18-wheelers and are no more than a small cubicle with a thin curtain partially covering the opening. There are sinks with running water outside of the shower trucks, but other than that the entire weekend was spent using porta-potties. Because you have to drink so much throughout the walk (to avoid an IV) you end up using them a LOT, and we all found that after half a day it doesn’t even bother you anymore.

By the second day, most of my teammates were developing blisters on their blisters, and we were all tired of the food provided at the pit stops and at the meals. I didn’t get any blisters the entire weekend, but we decided that was probably fair since I had cancer. The second day we walked through Arlington Heights, Mt. Prospect and Prospect Heights. We encountered a few minutes of rain and some clouds in the morning, but other than that the weather was great all weekend. Saturday night I gave my speech and then it was off to our tents again for another night of bad sleep.

On the third day we were taken into the city by bus and then we walked south along the lake shore through Lincoln Park, down Michigan Avenue, and we ended at Soldier Field for the closing ceremony.

Despite the bad food, poor sleep, and aching feet, however, we had a fabulous weekend. Randy and I are planning to crew for the walk next year, and most of my teammates have said they want to either crew with us or walk again. It really is worth all the aches and pains!
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The Chest Nuts

August 15, 2008

Frisk the 15th!

Time flies when you're having fun! It's the 15th...you know what to do!
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August 06, 2008

These Boobs Are Made For Walking

We’ve spent months training and preparing, covering miles and miles. We’ve grown from a pair of old friends planning to walk together, to a team of 12 amazing women. We’ve raised over $40,000. And it’s finally time to walk.

The Chest Nuts and I will be walking 60 miles this coming Friday, Saturday, and Sunday, along with somewhere around 2000 other people. We will be walking to support Susan G. Komen for the Cure and, more importantly, to do what we can so that hopefully YOU will never have to go through what I went through last year. We are walking for ourselves, for our mothers, our daughters, our sisters, our grandmothers, our aunts, our nieces, our fathers, our brothers, our sons, our husbands, and our friends. We are walking for everyone who is battling this disease right now and in honor of those who have lost their battles. Every step we take and every dollar we raise represents another step toward the eradication of and a cure for breast cancer.

I am so lucky to be strong and healthy and alive and able to take part in this event. Thank you so much for your support in my journey to get here.

Update: I have been invited to be one of two survivors who will speak at the camp show on Saturday night. There will only be between 1500 and 2500 people there...I'm not nervous or anything. (!)

Here is a link to the supporter page at the 3Day website. At the top of the page is a feed from the live webcam at camp which will be active between 2:00 p.m. and 9:00 p.m. (CST). (Video only, no audio.)

August 05, 2008

Milking Our Fifteen Minutes For All They Are Worth

Saturday was media blitz day for The Chest Nuts. Not only did we appear on the local NBC morning news, but there was an article about us in the local paper, too.

Rachel, Diane, Karen, and Lesli and I met at my house at 6:30 a.m. on Saturday morning and were on our way at 6:45 a.m. We were supposed to be at the NBC studio no later than 8:45 a.m. On a light traffic day, it takes about an hour to get into the city so I thought that would give us plenty of time to park and walk. As we pulled out of my driveway, one of my passengers reminded me that this weekend was Lollapalooza in Chicago. Then I began to get worried about making it on time. And sure enough, we hit traffic early in the trip. It was a good thing I had a car full of people to crack jokes about it, because I may have panicked if I was by myself.
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At NBC5 Studios in Chicago

Despite the traffic, though, we made it downtown with time to spare. We used the extra time wisely with a stop at Starbucks, and then it was on to the studio. Rachel had some guests staying with her from out of town and they accompanied us into the city, so we had them snap a couple of pictures in front of the NBC building before we went in. Just before we knocked on the door, Kristi joined us on the plaza.

Per my instructions, I knocked on the “secret” entrance to the studio and the door was opened by one of the crew members. We were greeted by a staff member, shown the bathroom and the coffee maker, and then we were told to wait. The back of the studio was nothing like I had pictured it in my mind. There was no glamour or greenroom or craft services or hair and make-up crew. Instead, it was just a long narrow room filled with pieces of equipment and a few computers for the crew. There was a microwave and a coffee maker in one corner and there were a few stale doughnuts lying on a counter. There was also a refrigerator covered with 4 x 6 photos of various celebrities. Soon after we arrived, the producer introduced himself to us and explained that we needed to be quiet since the set was just on the other side of the curtain we could see at the end of the room.
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NBC5 Studio

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NBC5 "Greenroom"

The first thing we all did was use the bathroom, which was about 5 feet behind the green screen used in the weather broadcast. As we were standing there, we saw the shadow of the morning weather woman appear on the other side of the screen and adjust her jacket. We were whispering…okay, maybe we were laughing a little bit, too…about how funny it would be to go up behind the screen during the broadcast and make shadows on the back of it, when suddenly we heard the disembodied voice of the producer call for “QUIET in the back!!” I felt like I was in middle school and had been talking in class as we all clamped our hands over our mouths and tried not to laugh. Eventually we were able to laugh about how terrible it would have been if we had gotten kicked out of the NBC studios within 5 minutes of our arrival.

They let us stay, however, so we settled in for a 45 minute wait. Just before the show started, crew member Kevin appeared with a mike and asked me to thread it up my shirt. After I did that, he attached it to my collar and then attached the transmitter to the back of my skirt. (Note in the picture how Karen is watching to make sure Kevin’s hands don’t stray where they are not supposed to. Thanks for watching out for me, Karen!)
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Getting miked by Kevin

Another morning guest was waiting in the “greenroom” with us. He was dressed in a lab coat with an embroidered label that told us his name followed by the letter “MD.” He had a metal briefcase filled with small opaque white plastic bottles labeled with masking tape. He opened the briefcase and set it on a table next to him, and then pulled out a contraption that looked like a small laser gun. Always friendly, Rachel soon engaged him in a whispered conversation and discovered that he worked at the Smell and Taste Research Foundation and that he was there to talk about how much people smelled. The laser-like piece of equipment was a smell-meter that he could use to detect smells in a room.

Dr. Smellgood (names have been changed to protect the innocent) was one of the first guests on the show, so we got to watch his segment from the back room. As we listened to him describe how smelly people are, we began to steal glances at one another and soon we were laughing hysterically. Even one of the crew members was chuckling and shaking his head. The title of Dr. Smellgood’s segment was “The Stinky Truth” and he discussed how much stinkier it is in bars these days now that we don’t have the smell of cigarette smoke to cover up the stink of people—mostly men. He said that men smell worse than women (and attributed that to their less acute sense of smell) and that men’s rooms rank right up there with pig pens and bars as the smelliest places. His solution to the problem? Axe. Let’s just say that TV is not Dr. Smellgood’s calling. He was definitely nervous, and we all began to wonder if he was actually even a doctor as he stuttered and babbled his way through his demonstration of his smell-meter.
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Dr. Smellgood and his "smelpers"

I had a lot of sympathy for him, however, because I was definitely starting to get nervous at this point. By this time I realized that there wasn’t going to be any preparation…no one had said anything to me about what the newscaster (Ellee Pai Hong, for those of you in Chicago) was going to ask me, and in fact we had only seen her very briefly when she came back to talk to one of the other guests. (And by the way, she and the weather woman were teeny tiny. They were probably no more than 5 feet tall in their spike heels, and both had hips and waists no bigger than a minute. Since they look regular size on TV, we all began to wonder if we would look like an Amazon walking team standing next to them.)

The segment just before ours was called Firefighter Fitness and consisted of a group of Chicago firefighters demonstrating exercises on the plaza outside the studio. As they neared the end of their demonstration, Kevin came and hustled us outside for our appearance. As we stood there waiting for the producer to tell us where to stand, Ellee Pai Hong came over to us, introduced herself, and then asked me one question about the walk. She wanted to know if we had just done one already this year (she was confusing it with the Avon 2 Day walk). I noted that she was probably thinking about the Avon walk and explained to her the difference between that one and the Breast Cancer 3Day. (I had spoken with a 3Day PR rep a couple of days before to do some media training and luckily she had mentioned that this is a source of confusion, so I was ready with my answer to that question.) After that, Ellee was called back to be on air and that was it—that was all the preparation I got!

After that things happened pretty quickly. The producer placed us next to Ellee and the weather woman, they did a final weather forecast, and then we were on. Ellee was so nice and kind and asked just a few questions about the walk. At one point in the middle of one of my answers the camera man moved very close to us and the camera was within inches of my face. I can tell exactly when that happened when I watch the interview because I lost track of my answer and had to search for a word as I felt the camera get closer and closer to me.

Luckily Randy recorded the show, because I had no memory of what she asked me or what I said right afterward! I think the whole thing lasted maybe 3 minutes, although I completely lost track of time, as well. After we were done the producer asked us to stick around to be in the “crowd shot” at the end of the show, so we did.

After that we all had breakfast and went shoe shopping as we tried to fight off the paparazzi looking for photo ops and autographs.

Oh, wait a minute…that might just have been in my dreams. (We really did have breakfast and go shoe shopping, however!)
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Breakfast at Nordstrom

YouTube documentation can be found here. And see the July 24th post for a link to another article that appeared on Tuesday in the Spartanburg-Herald about Alison and Mandy!

July 24, 2008

Fifteen Minutes

CR Magazine
Loyola Law School Alumni Magazine
Northwest Herald
Spartanburg-Herald
NBC5 Interview
ABC News article
New York Times
January 2009 NBC5 Interview

July 15, 2008

Feeling Frisky?

Good, because it's the 15th of July. Do your monthly self-exam!
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July 02, 2008

Drink the Wine. Wear the Clothes. Use the China.

I find that all the exercise endorphins and the effects of a healthy diet and my joy at living are easily tempered by the sobering news that I have received in the past few weeks. One day a month or so ago a friend of mine called me to tell me that a mutual friend of ours, Rosemary, had just been diagnosed with breast cancer. The moment the words left her mouth I felt the world stop for a minute as I digested the news. Hearing those words brought me right back to the initial words and weeks of my own diagnosis…the confusion and depression and denial and fear. I called Rosemary immediately and have tried to pay it forward a little bit while she has gone through the initial surgeries and planning stages of her diagnosis. I feel so helpless though. I want to make it go away. I know what she’s up against, and I want her to not have to go through it.

Almost exactly one week later, my father called me one evening to tell me that a friend of his and my mom’s was diagnosed with breast cancer after an abnormal mammogram. Marilyn is exactly one week behind Rosemary in treatment so far. Talking to Marilyn about her diagnosis and treatment plan made me feel the same way I did in talking to Rosemary…it brought back some of the emotions that I experienced so clearly and I wished that I could somehow make it better for her.

When I was going through surgery and radiation and chemotherapy last year every single thing that happened seemed so dramatic and I thought that I would remember every detail forever. What I realized as I spoke with Rosemary and Marilyn was that some details have already become foggy. I can’t remember exact dates anymore, and in some instances I can’t remember what happened first and what happened second. I have looked back at my blog several times to refresh my memory, and I realize how thankful I am that I wrote everything down. This blog has become an important record for me.

And then two weeks ago my dad called me again to tell me that the other shoe had dropped for my cousin Jenny. I’ve written about Jenny before. She was diagnosed with breast cancer a few years ago and had been cancer free for almost four years. Jenny is only 35 years old and has two little girls, the oldest of whom is only a few months younger than Matthew. Jenny had breast cancer in her right breast and went through surgery, chemo, radiation, and then more surgery when she had a mastectomy followed by reconstructive surgery. And then she found another lump in her left breast. The good news, if there is any, is that this is not a recurrence of the same cancer, but a brand new primary tumor. That is “good news” because it means it is not a metastasis of the original cancer.

Last Tuesday she had another mastectomy on the left side, and will be starting chemo again in July. She found out this week that the cancer had not spread beyond the sentinel lymph node, which is also really good news. Jenny and I talked extensively before her surgery about everything that she is going through. Both of us expressed our dismay at the fact that it came back. (I know I just finished saying that it didn’t really come back, but that’s what it feels like nonetheless.) If you do everything they tell you to do and you work really hard at surviving, it’s not supposed to come back.

When my dad first told me about Jenny, I felt my stomach drop and the ground shift a little bit under my feet. When you have had cancer, you see, this is your very worst fear. Most cancer survivors don’t mention this part of it when you talk to them because it’s all about how well they are doing now. But it is always there. Not a day goes by that I don’t think about this possibility. The idea of cancer returning again colors every single thing that I do. When I watch one of my kids swimming in a swim team event or running down the field in soccer or football, when I celebrate their good grades or when I sit down to eat dinner with them or celebrate one of their birthdays, I also celebrate their lives and my life and the fact that I get to do those things with them. Even something as simple as grocery shopping or writing a paper for school or meeting a friend for drinks or taking a trip with Randy or going to work is a cause for celebration for me. I constantly note how happy I am to get to take advantage of these moments in life. And I think about how I need to live fully…in case the cancer comes back. It’s not that I live in constant fear so much as the fact that I try to take advantage of and fully appreciate each moment as it comes.

Hearing that Jenny found another lump meant that it could happen to me. She went through the same treatment that I did, and then some. She did everything the doctors told her to do. It’s simply not fair that she has to go through it all again. If you do what they tell you to do, it’s not supposed to come back. In talking to Jenny about all that is ahead of her, I realize how difficult it would be to face cancer treatments for a second time. On the one hand, you know what to expect so you are not facing the unknown. But on the other hand, you know what to expect and it is terrifying.

As I have struggled with my worries about Jenny, I have repeated my new philosophy of life to myself and to Randy and to anyone else who will listen. Drink the wine, I keep saying. Wear the clothes. Use the china. Don’t save them for a special occasion or for the “right” moment, because you might never get the chance. It would be a shame if I found another lump tomorrow because I purchased four bottles of really good wine two months ago and I haven’t opened even one bottle yet. What if I cross the street tomorrow and get hit by a bus and I never get a chance to wear those new shoes sitting in my closet? And isn’t it a shame that the lovely china I received as wedding gifts sits in my dining room hutch and only gets used for Thanksgiving and Christmas?

Jenny has a website here where she is writing about her journey this time around. I’d like to end this post with a personal message for Jenny:

Jenny, I am thinking about you and rooting for you, and so are every one of your family members here in Illinois. You fought this thing once and survived and thrived, and there is no doubt in my mind that you will harness all that Crum stubbornness and tenacity and do it again. Know that we are all cheering for you and that we stand ready to do whatever we can to help! We love you!

June 30, 2008

Update

Despite appearances, I have not abandoned this blog. After Randy asked me if I had decided to stop writing, though, I thought maybe I should post an update.

In the last few weeks I’ve finished up the spring semester, taken a summer session class, and started work (which I wish I could write about because it is fascinating!). During that time I have also continued to train for the 3-Day in August and I ran my first 10K in May. Yes, that’s right; I ran 6.2 miles(!). Six months ago I would never have thought I would do something like that in a million years. Of course, “run” might be stretching it just a little bit, because I didn’t actually run the entire 6.2 miles. I walked 3 or 4 times for about a minute each time, but I crossed the finish line nonetheless. And it felt great! I had a my six month check up with my oncologist a couple of weeks ago and things still look “perfect” (his word). As far as I’m concerned, that’s a good assessment. Next week I will be seeing my radiation oncologist for what I think might be a one year post-radiation appointment. It’s difficult to believe that it has been that long since I went through radiation, but I think it has.

I still have a few lingering side-effects from my cancer journey last year and some of them may never go away. For example, I still have some numbness and nerve damage on my left side under my arm and along my back shoulder. I notice a significant difference in strength on the left side when I try to lift something over my head or out to the side…basically anything I need to use my shoulder muscles to do. I still have my port, which isn’t really a side-effect so much as something that is just kind of constantly there. I don’t think other people really notice it, but I see the line running into my neck and along my chest every single time I look in the mirror. My hair is still short and has remained really curly. It’s kind of amazing to me and I’m still getting used to having brand new hair. I spent my entire life learning how to wash, style, and live with my straight blonde hair and now I have to relearn everything I ever knew about my hair. But I’ll take it…short curly hair is way better than no hair any day!

One of the side-effects that I’ve written about before is the early onset of menopause. I knew that some women revert back to their regular cycles several months after chemotherapy, but when I got to six months I was beginning to wonder if I would be one of those women or if I would be one of those who were sent permanently into early menopause. I’m truly happy to report that I’m not and that I’ve gotten at least some reprieve. Hopefully it will be a good long time before I have to deal with hot flashes and hormone changes on a regular basis.

While I am celebrating my health and life every single morning these days, however, it seems that around each corner there are constant reminders of what we are all up against every day. I will write more about those reminders in a separate post.

June 15, 2008

Frisk the 15th!

It's the 15th of June. Don't forget to Frisk the 15th!
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May 15, 2008

Walking the Walk

As you can imagine, I’m all about reminding women to do a monthly self-exam these days. Every time I tell my story to someone new, I always end with an entreaty to be vigilant about doing self-exams.

I confess, however, that I am not doing them.

I hope that by admitting that here I will be forced to walk the walk, rather than just talk the talk. It can mean the difference between life and death, so why is it so hard for us to do it? For me, I think that it is fear as much as anything else. I don’t want to find another lump, because if I do there is a high probability that it will be more breast cancer. I think that subconsciously I hope that if I don’t know about it I won’t have to deal with it. It’s the ostrich approach, and it’s the wrong one.

I wasn’t so great about doing self-exams before I had breast cancer, for the same reason. I didn’t ever always think about it when it was convenient, and when I did remember to do it I always felt a little foolish. After all, how in the world was I supposed to know what to look for? And if I did find something, would I know what to do next? But mostly,I was afraid to find something.

But everything you read about breast cancer says that the early detection is the key, and I am living proof of that. I found the lump in my breast myself. Not because I did a breast self-exam (at the time that I found it, I hadn’t done one for 8 or 9 months), but because I was in the right position at the right moment and because my pajama top was bothering me. What if I had decided not to read that night? What if I hadn’t tried to adjust my top? Who knows when or if I would have discovered the lump. And maybe the next time I remembered to do a self-exam or to schedule a mammogram, my cancer—a very aggressive form of breast cancer—would have spread to another part of my body.

This thought scares me….does it scare you, too? I hope so. I hope it scares you enough to remember to do a self-exam tonight!

And for the record, when I did find something I suddenly knew what I was looking for and I knew what to do.

In order to help you and me remember to do this, I am going to steal a reminder from Mary at Almost Somewhat Positive. She has designated the 15th of each month as Frisk the 15th in order to remind women to do their self-exams. I will do my best to remind you to feel your boobies each month on the 15th by posting a reminder. Will you please remind me if I forget?

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Keep in mind that you don’t have to have a lump to have breast cancer, either. If you notice any abnormal changes in your breasts, call your doctor. And make sure that you also schedule an annual mammogram.

If you need a little help remembering, why not order a free waterproof breast self-exam card for your shower from Susan G. Komen for the Cure (one per household)? You can also print the information out on paper here.

May 14, 2008

Anniversay

Today marks my first anniversary, although it’s not one that I ever planned on celebrating.

Today I have been cancer-free for one year.

May 07, 2008

The Home Stretch

Another semester is over and I am busy preparing for finals now. It feels much different than the end of last semester. When I was reviewing my notes in preparation for finals last semester, I didn’t even remember covering certain subjects. I’m sure it was a combination of the chemo and of having so much going on during the semester. This time it feels like the end of the semester normally does…I remember most of what we talked about, it’s just a matter of synthesizing it all into an outline that makes sense. I hope that the exams themselves will be easier for me than they were last semester, as well.

The beginning of this month marked six months since my last chemo treatment. For a long time, I found myself telling people, when it came up in conversation, that I had finished chemo on November 1st. Now, when it comes up, I tell people that my last treatment was six months ago. It is a subtle but interesting mental shift…kind of like when you move from telling people your child’s age in months to her age in years. In just a few days, I will be able be able to tell people that I have been cancer-free for one year. (I am counting from the day I had the lumpectomy since that is the day that it was actually removed.) In some ways it feels as if it has been years and years since I had cancer, and at the same time it seems all too recent.

I will be celebrating Mother’s Day this year by running in this race with my family and some friends of ours. I hope to make it our new family Mother’s Day tradition.

April 20, 2008

Flashbacks

I have written before about how frequently I still think and talk about breast cancer. I am still dealing with several residual physical effects of chemotherapy, including, among others, menopause, weird nail issues, and nerve damage in my left arm and back. (All of which are minor, minor issues compared to chemo and cancer!) There are left-over emotional issues, as well. Every time I hear about a cancer diagnosis I find myself getting emotional about it, for example. And there are times when something unexpected triggers a very distinct, physical memory of chemo, which can be overwhelming sometimes.

I had one of those moments last week. I was getting ready to leave the house to go to school one morning and I decided to wear a bright fuchsia trench coat since it was such a beautiful day. I didn’t want to wear one of my dark scarves with the coat and I remembered that I had a scarf with all kinds of bright colors on it that I had worn on my head last summer. I ran upstairs, dug through the scarves hanging in the back of my closet, and pulled out the brightly colored one. As I began to unfold it to look at it, I was struck by my physical reaction to the colors, the pattern, and the feel of the scarf. Holding it made me feel almost nauseous, and I experienced a strong physical aversion to the scarf. I tried to tell myself that I was being silly, but I couldn’t overcome the feeling; I could hardly look at it. I knew there was no possible way I was going to be able to wear it, so I hung it back up and decided not to wear a scarf at all. It was a strange feeling because I have never had such a strong reaction to an article of clothing. (Other than when I find a pair of shoes that I must have, of course, but that’s a much more positive feeling!)

I have held on to my scarves and hats out of some kind of superstitious fear of a cancer recurrence, but I think that I am going to donate them somewhere because I need to get them out of my house. I am sure that I will never, ever wear them again unless I have to go through chemo again, and I can’t wait around for that to happen!

April 13, 2008

368 Days

That’s about how long it has been since I first discovered a lump in my breast. As I wrote recently, just a few days after I found the lump I had breakfast with my kids, my parents, and my brother and his family following a local 5K/10K race in which my brother and my nephew ran. I had not seen a doctor yet, so I had not told anyone about it on that Sunday morning. I thought about it all morning, though; little did I know how ominous it would turn out to be.

Today—368 days later—I ran in that same 5K. While I didn’t set any records for the fastest time, I ran the whole thing. (Except for the moment when I had to stop to tie my shoe!) Today during breakfast, instead of thinking about my mortality and instead of feeling frightened about the ramifications of finding a lump in my breast, I thought about how lucky I am to be able to run and about how lucky I am to get to spend that kind of time with my family.

My world is a very different place than it was 368 days ago. In some ways, it is a darker and more difficult place. After all, the fear of a recurrence or metastasis is always lurking in the corner (and sometimes in the front) of my mind. In many ways, it is a better place. I am probably healthier right this minute than I have ever been before in my life. And I appreciate each day and each person in my life in more ways than I did a year ago. I can’t go so far as to say that having breast cancer was a good thing, but I’m still here, so it wasn’t the worst thing.

My brother and my kids all ran in the race this year, too. Despite the snow on the rooftops this morning and the balmy 32 degree temps (Hello, Chicago in April!), it was an exhilarating morning for all of us.

LITH Run 2008.JPG

Next stop—the Y-Me Race to Empower on Mother’s Day!

Hair Update

This is for those of you who have been curious about my hair. This was taken on Friday night at dinner with my friends Rachel and Gayle. I am about 5 1/2 months post-chemo.

Yes, it's curly! No, there is no gray! (Thank God for small favors!)

Rachel, Kim and Gayle.JPG

March 27, 2008

After

I have been writing more about my walking/race training and school recently than I have about breast cancer. To read this blog, you might think breast cancer is a distant memory for me now. It is far from that, however, and I still think about it a lot more than I want to. I talk about it a lot, too, both because I often run into someone who asks me how I’m doing and because it seems to come up in my conversation frequently these days. Sometimes those conversations happen in unexpected ways.

We live in the same town that Randy and I lived in while we were growing up. I never thought I’d end up living here, but it turns out to be a great place to raise kids, so here we are.

This used to be a relatively small rural community. When my family moved here in the late 70s the population was about 5,000. To get to our high school you had to traverse several country roads and then drive down a driveway surrounded by cornfields and cow pastures. This area is one of the fastest growing in the state, however, and now the population is around 30,000 and the high school is surrounded by hotels, malls, homes, and fast food restaurants. It doesn’t look much like it looked in 1979.

We moved back here right after Karly was born and just as area growth was starting to explode. One of the first commercial buildings to be built across the street from the high school was a Jewel grocery store. (For those of you who are not from Chicago, Jewel is a large grocery chain owned by the same company as Albertsons.) I remember very well when the store opened because it was just a couple of blocks from our house. If we lived in the city it would have been within walking distance. The store opened right around the time that Blake was born, about 14 years ago or so. I started shopping there when it opened and I shopped there almost exclusively for years despite the addition of a Dominicks, a Cub Foods, a Super Target, Super Wal-Mart and a Meijer in the same vicinity. We have since moved to a different house, but the Jewel is still pretty close. I haven’t frequented the store as much in the last couple of years because a new grocery store opened up in the area that has much better prices. However, I still stop in a couple of times a week to pick up fresh meat or produce or other last minute meal ingredients.

I made one of those last minute stops one day last week to pick up ingredients for dinner, including some fresh shrimp. I stopped at the butcher counter and placed my order and the woman behind the counter told me that she thought my hair was really cute. I have been getting lots of compliments on my short style recently, and I always laugh to myself at the fact that people think this is a choice that I have made. This time was no exception.

As I was standing there thinking about how shocked she would probably be if she knew why my hair was this short, she suddenly asked me, very pointedly, how I was feeling. I looked at her closely, and realized that she recognized me and that she knew exactly why my hair is this short. What is amazing about that is that I don’t know this woman except as an employee of Jewel who works behind the butcher counter. I don’t know her name or where she lives, and we have never met each other outside of the grocery store. I recognize her from the meat department, but I’m not sure if we have ever even spoken to one another before. I told her that I was feeling great and that I was surprised that she knew who I was. She assured me that she recognized me and that her heart had gone out to me when she saw me shopping in the store last year. (I knew that she was referring to my parade of scarves and hats.)

I was astounded that she recognized me and remembered me, and I told her again that I couldn’t believe that she knew who I was and then I found myself getting a little teary about it and I told her so. She told me that of course she knew me, and that she also knew that I had been shopping in the store since they opened. She said that she remembered when I used to come in with my babies who were probably not babies any more.

We talked for a few more seconds until my shrimp was wrapped and ready to go and then I continued shopping for the other items on my list. I found myself feeling a little emotional about the encounter for awhile afterward, though. I was so humbled last year by the outpouring of support that I received from my family and friends and classmates and teachers and doctors and nurses and strangers and from my blog readers and their families and friends—I am still humbled by it. I have said before that it was often the thing that got me through the hardest parts. Discovering that even a grocery store employee was watching me go through the experience and was rooting for me was surprising and touching and meant so much to me.

Cancer is awful in so many ways. It is hard and frightening and life-changing. It brings things into your life that you hope that you never have to experience. But it is a strange thing because it also brings amazing things into your life. I have frequently told people that sometimes having cancer made me feel like I got to observe my own funeral. People told me things about how they felt about me and my family that they might never have told me if I wasn’t dealing with breast cancer. I got to hear the kinds of things that they might say about me if they came to my funeral and I got to acknowledge, through their own words, the ways in which my life and the lives of other people have touched one another. I wish that everyone could experience this kind of affirmation, because it is powerful. As I have started to work my way out of the darkness of a cancer diagnosis and treatment, I find myself trying every day to tell people how I feel about them. I hope that I can always remember to stop and reflect on the ways in which people touch me and to tell them about it.

If I could give only one piece of advice to a friend or family member of a cancer fighter, it would be to tell them how you feel. Tell them what they mean to you and how much you care about them. Your love and friendship is powerful, incredible, healing stuff.

February 17, 2008

The 3 Month Mile Marker

Last week I had a three-month post-treatment check up with my oncologist. I can’t believe it’s been three months since my last treatment. Sometimes it feels like it was just a couple of weeks ago, but most of the time it feels like it was a long, long time ago.

I was really nervous about the appointment, and my arrival in the office parking lot didn’t help. I couldn’t help thinking about all the time I spent traversing that same lot last year. It has many bad associations for me…of pain and nausea and fear and discomfort. As I sat in the waiting room before my appointment, I thought about all the women who are just now finding out that they have breast cancer—200,000 women this year…1 every 3 minutes. I thought about the fear of hearing those words and about the uncertainty of those first weeks and months after a breast cancer diagnosis. It is scary to think about going through it all again and as I sat there and waited to be called in for my appointment I fervently hoped that I would never have to.

My appointment went well, however, and I had nothing to worry about. The doctor asked how I was doing, performed a quick check up, and pronounced me “healthy.” I sat in a green vinyl chair in the treatment room, but only for a few moments as Patty flushed my port while I caught up with her and the other nurses in the office.

I have to go back again in six weeks to have my port flushed (which I have to have done every six weeks as long as I have it to prevent infection) and then again in three months for another check up. So far, so good.

February 11, 2008

The Breast Cancer 3-Day Walk

For several years now I have seen the advertisements and heard the news recaps about the Breast Cancer 3 Day walk. It crossed my mind that I would like to participate somehow, but I never took it any farther than that. This year, however, I have a new and compelling reason to do something.

This year I am a breast cancer survivor.

This year I am going to walk….because I can.

I have registered to walk in the Breast Cancer 3 Day in Chicago on August 8-10, 2008. As a walker, I have committed to raise $3000 by walking 60 miles over the course of those three days. The money raised during this event goes toward Susan G. Komen for the Cure and the National Philanthropic Trust. The money is used to fund breast cancer research, education, screening and treatment.

I ask you to join me in this very important fight by making a donation to sponsor my participation in the walk. You can do that by visiting this website and clicking on the link on that page underneath my picture. You can make a donation online or by printing out this form and mailing a check. Your donation is tax deductible. (You also have the option of making several smaller donations over time if that helps you to budget the expense.) Any amount will help, from $10.00 to $100.00 or more.

I would also like to invite any of you who are interested to walk. There are 14 Breast Cancer 3 Day walks all around the country. You can find a list of the locations here. If you want to be involved but you don’t want to walk, there are also many crew and volunteer opportunities available for each walk. There is more information about those opportunities here. If you would like to join my team, The Chest Nuts, and walk with me in Chicago, please let me know and I will send you the information about how to do that!

Thank you so much for your support!

February 04, 2008

And The Winner Is...

The Chest Nuts!

That name won with 44.6% of the votes, so The Chest Nuts it is.

Thank you so much for your help in choosing!


The Final Counts
The Chest Nuts 44.6% 29

Simply the Breast 29.2% 19

Freshly Squeezed 26.2% 17

January 28, 2008

60 Miles in 3 Days

One of my college roommates, Courtney, sent me several e-mails last year over the course of my chemo treatments. In one of them she planted a seed that has since taken root and begun to grow. She asked if I was interested in walking in the Breast Cancer 3-Day this year. I said yes, and we have decided to move forward with that plan.

This past Saturday I attended a Get Started meeting and registered for the Chicago walk which takes place August 8-10, 2008. The walk covers 60 miles in 3 days and the money raised goes to Susan G. Komen for the Cure and the National Philanthropic Trust. I also signed up to be a team captain and so far Courtney, my sister Molly, and my friends Cheryl and Alison have agreed to be my teammates.

In the next few weeks I’ll be posting more information about the walk here, and I’ll be contacting many of you soon begging asking you to sponsor me in the walk. (Consider this fair warning!) I’d also like any of you who are interested to let me know if you would like to walk with us.

But today I need your help coming up with a name for the team! If you have a moment, take a look at the choices listed below and let me know what you think.

January 26, 2008

86 Days

I snapped a couple of new hair regrowth progress pictures this morning and then decided that today was a good day to share the post-chemo images that you have been asking about. I previously took pictures 1 day post-chemo and then again 51 days post-chemo. Today is 86 days post-chemo. I haven’t looked at the 1 and 51 day pictures since I took them.

I added the 86 day pictures today and then looked at them all in order, side by side. These photos were supposed to chronicle the regrowth of my hair, but my reaction to them caught me totally off-guard.

I have spent the past month and a half feeling so great and so healthy, and every day I feel like I am recovering both physically and mentally from everything that I went through last year. Looking at these pictures, however, brought it all back. When I look at the photo of me with no makeup on that first day post-chemo it makes me cry. The picture makes me feel frightened to my very core about the idea of ever going back there again.

Every day, no matter how good I feel, there is always a tiny place in my heart that can’t forget about the cancer. That little place is constantly wondering if there are any cancer cells left in my body and if there are, how and where and when they might manifest themselves. That tiny place worries that maybe there is more cancer somewhere else. I am certain that these feelings are common to all cancer survivors—they are just part of the cancer package. And most of the time they don’t bother me. I plan to live my life fully and without undue worry as much as I possibly can. Looking at these pictures, however, pulls that tiny worry right to the very front of my mind. When I see these images of myself looking like this I feel everything that I went through—all the sadness and fear and grief and pain and weakness. While I am glad that I have documented the journey through photographs, I have a feeling that I won’t look back at them very often. Maybe it will get easier with time, but for now it isn’t something that I want to revisit.

At the same time, when I look at the picture of myself that I took this morning I can see how far I’ve come and how far I am from all that I experienced last year. That picture gives me great hope, because if I look like that 86 days after my last treatment then it can only get better from here.

Day 1 Post Chemo-Nov 2, 2007 (No Makeup).JPG
Day 1 Post Chemo (November 2, 2007--No Makeup)

Day 1 Post Chemo-Nov 2, 2007 (With Makeup).JPG
Day 1 Post Chemo (November 2, 2007--With Makeup)

Day 51 Post Chemo-Dec 22, 2007 (With Makeup).JPG
Day 51 Post Chemo (December 22, 2007); This is the first day I was able to put mascara on my microscopic short little eyelashes!

Day 86 Post Chemo-Jan 26, 2008.JPG
Day 86 Post Chemo (January 26, 2008); The eventual color of my hair is anyone's guess. There are a lot of dark strands, but there are also a lot of blonde strands. (And they are all just as straight as they can be. So much for curly hair.) It looks like it is going to be very close to my regular untreated oh-so-lovely shade of dishwater blonde. If that's the case, as soon as I hit the 6-month safety mark I'll be at Suzy's house getting highlights!

Day 86 Post Chemo-Jan 26, 2008b.JPG
Day 86 Post Chemo (January 26, 2008)

January 24, 2008

Changing Focus

As you may have noticed, the frequency of my posting has dropped off in the past couple of months. Part of that is due to the craziness of the holidays followed by a week of intensive school, but part of it is because I am at a point in my cancer journey where changes don’t happen every day. New news happens less often, thank goodness, and I no longer feel as if I need to journal every ache and pain. Mainly because I don’t have any aches and pains. I know that there are a lot of people still reading, however, and I want to keep writing. This means that I have to figure out what direction to take this blog and to come up with something new to write about. I will continue to update my progress, of course, but I hope there won’t be much more to write about other than the clean bills of health I will receive at each future doctor’s appointment and a documentation of the return of my locks.

One of the focuses of my life in the last nine months has been health. As you can imagine (or as you know if you’ve been down this road), a cancer diagnosis forces you to look at your health in a more critical way than you ever have before. One of the first questions I asked after my diagnosis was “why me?” The focus of the question was not “why is this happening to me?” but “why did I get cancer?” As a young, healthy woman, I couldn’t help but wonder what it was that made these cells proliferate in my body. Was it something I did? Was it something I didn’t do? Something I ate? Something I was exposed to? And the biggest question of all was—and still is—“what do I need to do to keep it from coming back?”

As part of the large amount of reading and research I have done about cancer, I couldn’t help but read about the many ways that food and exercise and environment affect the rate of cancer in any given population. There is a lot of information out there and much of it is confusing. Is red wine good for us or bad for us? Does exercise help prevent cancer or does it not make any difference in cancer rates? Do food additives cause cancer or is it just a completely random run of bad luck?

The American Cancer Society has said that women have a 1 in 3 chance and men have a 1 in 2 chance of developing some kind of cancer in their lifetimes. With statistics like that staring us in the face, my question is what can we do to lower our risk of developing cancer?

My plan is to share some of what I have learned. I will break it down a little at a time and share what I have found and what I am doing to prevent a recurrence. I don’t know if any of it makes a difference, but I feel as if I need to do whatever I can to prevent a recurrence of breast cancer or to prevent some other kind of cancer from developing. Improving my diet and my overall health makes me feel like I am being proactive and taking control whether or not that is true. And it certainly can't hurt.

January 17, 2008

More About Hair

My trial practice intensive last week was, as the name implies, intense. The days flew by, but a lot of the time it felt like I was out of town. I didn’t spend much time at home and the time I was there was spent studying and getting ready for the next day. But it was a good way for me to take a class…one week of intense work and family disruption means I don’t have to take it spread out over an entire semester. And it was a great class.

The worst moment came on Monday night. I had been at school all day on Saturday, Sunday and Monday, and Monday was the first day back to school for the kids. On Monday night I went in to say goodnight to Matthew and he informed me that I had forgotten to pack his lunch that morning. I told him that I thought he was buying lunch on Monday, but he reminded me that actually he had planned to take his lunch that day. I asked him what he ate, and he told me that he just had some apple juice because he wasn’t able to get anything else. I felt awful and figured that probably clinched my loss of the Mother of the Year award. And it was only January 7th! Needless to say I made sure I had the whole lunch thing figured out for the rest of the week.

Regular classes started this week and while my schedule this semester is very manageable, the days I have classes are going to be pretty hectic. But no matter how hectic it gets, this semester is going to be very different from last semester. I have thought many times over the past couple of weeks about how appreciative I am to only have to handle classes and my regular daily life for the next few months without having to fit in chemotherapy and sick days.

During my trial practice class we had to wear suits to school every day. By the end of the week I was getting sick of trying to coordinate scarves with suits and of trying to look professional with the additional accessory on my head. I have been tired of wearing something on my head for a long time now, but I have needed to continue to cover my head for the sake of warmth. I wore a scarf to class on Tuesday, as usual, but when I got home that evening I took it off and decided that I am done with scarves. I have enough hair that I no longer look bald (although I don’t really have enough to keep my head warm yet) and I think it is high time to be finished with head coverings. So today, for the first time since I lost my hair, I spent the entire day at school with nothing on my head. Except hair, of course.

I will post pictures soon so you can see for yourself, but my hair is super, super short. To me, it looks more like post-cancer treatment hair than a fashion choice. But despite my interpretation of it, two separate people came up to me at school today and told me that it looked “cute.” I don’t think either of them realized how very, very happy I was to hear them say that or how good and normal and healthy it made me feel. It has been a long time since anyone said that my hair was cute! Another friend told me that she thought it looked like I was hip and cool and had made a conscious decision to wear my hair this way. I feel far from hip and cool these days, but I appreciate the sentiment and hope that I can pull it off while it’s growing out.

Last Friday, Randy and I went to dinner with friends at a restaurant that we all frequent. Our “regular” waitress waited on us and greeted us all warmly when she came to our table. After the initial hellos, she looked at me and said, enthusiastically, “Oh, look at your hair! It looks good! I should do that with mine!” I didn’t explain why my hair was this short, but instead told her that having it this short made it really easy to “do” in the morning. We all laughed about it after she left the table because it is quite funny that people think this is a deliberate hair style.

Now that I’ve completed yet another post about it, I have to say that I can’t believe how much I have written about hair in the past nine months. If you would have told me a year ago that I was going to be this obsessed with hair this year, I would never have believed you. Shoes…maybe. But hair?!

January 03, 2008

Book Review: The Middle Place

A couple of weeks ago I received a review copy of another book, The Middle Place by Kelly Corrigan. (The first link will take you to the book on Amazon.com, the second link to Corrigan’s website and a gorgeous picture of her and one of her daughters.) The book will be published in just a couple of days on January 8, 2008, and this is one that you might want to pre-order. I will be recommending it enthusiastically to all breast cancer patients who are mothers, to the people who love them, and to all women my age who have a parent dealing with cancer or another illness.

I haven’t mentioned it here before, but my father was diagnosed with prostate cancer at the beginning of last year. He’s doing well now, but the diagnosis gave us all a scare. My cancer diagnosis came just a few short months later and I remember thinking a lot about my roles as a daughter and a mother dealing with cancer…both my own and that of a parent. When the publicist sent me an e-mail describing this book, it sent a little wave of recognition right through me and I couldn’t wait to read it. Kelly Corrigan is the mother of young children and was diagnosed with breast cancer in her late 30s. Shortly after that, her father was diagnosed with cancer. Her book is about her experience in straddling what she calls “the middle place—that sliver of time when childhood and parenthood overlap.”

That introduction does not do the book justice, however. Corrigan is a very talented writer who finds the words to describe in detail what it is like to be a mother with cancer and to be a daughter whose beloved parent has cancer. She describes her own heartbreaking and yet hopeful experience, but she is also describing the emotions of all of us who have lived through one or both of these experiences, and she does it in a way that is humorous and poignant and lyrical and compelling.

I loved reading this book from the very first page. I found myself wanting to call Corrigan and invite her on a coffee date because she knows exactly what I have experienced in the last few months. As I read, I marked pages and underlined passages to come back to because there are moments when it is as if she is in my head, pulling the words right out. At times I felt as if I was in the middle of a Southern Baptist congregation, saying, “Yes! Sing it, sister!” as she struck some particularly perfect chord.

An example of her ability to capture the details of any given moment comes when she describes her inadvertent discovery of a lump in her breast, in many ways very much like my own inadvertent discovery. She was doing something else, just going along in the middle of her normal routine, when her hand brushed against her breast. It is a split second…such a tiny little moment in time and you can hardly wrap your mind around what your hand seems to telling it. Corrigan says, “I touch it once, pressing it lightly with the open palm of my hand, and then, after a flash of shock passes through me, I force my full attention to bathing the girls.” That sentence alone captures so much of what it is to go through this as a mother with children at home. You can’t stop and investigate, and you certainly can’t show your utter fear and terror. You can’t deal with it at that precise moment because you have to finish bath time and get everyone dressed and ready for bed and make sure teeth are brushed and stories are read and then there are children to be tucked in. Your kids need you…you are their mother. You are supposed to be strong and to know what to do and to be able to protect them from the bad things in the world. There is no room and no time for lumps.

Kelly Corrigan has quite a story to tell and she does it so well that I think this book would be a comfort to other mothers going through the same thing. She evokes a mother’s all-encompassing love of her children and how painful and poignant that love can feel when you find out you have cancer. At the same time, she describes how difficult it is to come to terms with a parent’s illness and how you can be a grown-up mom and a little girl all in the very same moment, switching roles almost from one breath to the next.

I give this book two thumbs up and five stars. It would make a wonderful New Year’s gift for a mother who has been diagnosed with cancer, whether that is yourself or someone you know. I wouldn’t limit my recommendation to cancer patients/survivors, though; it is so well-written and deals with so many universal emotions that I think any mother would enjoy it. I hope that we will hear more from Corrigan very soon.

January 02, 2008

Hair Today, More Hair Tomorrow

I am reveling in my return to normalcy these days, and thankfully I have lots of things to revel in lately. I enjoyed every taste of wine and champagne and beer and cookies and lasagna and ham and candy and potatoes and garlic and all the other lovely holiday treats that crossed my palate throughout the past couple of weeks. I thought a lot about those days during chemo when I couldn’t taste a thing and I was thankful at every meal that I wasn’t going through treatment during the holidays. I am savoring everything that I love about good food more than ever before and hoping that all this gastronomical love doesn’t appear on my hips and thighs, as well.

Remember the tube of mascara I bought just before Christmas? It’s been opened and used. I have eyelashes that are long enough to put mascara on and they grow a little bit longer every day. I have eyebrows again, albeit thin ones, but the combination of brows and lashes means that I have been using less dramatic eye makeup lately and that feels great and so normal.

The hair on my head is still growing, of course. Not fast enough for me, but fast enough that my family has been amazed every time they have seen it over the past couple of weeks. I no longer need to keep my head covered in the house for warmth, though I still have to wear double layers on my head when I go outside. I might actually have to comb it soon, and I can’t wait.

The hair on my head is not the only hair that is growing, either. All the other hair is coming back. I even shaved my legs the other day. These seem like such small things, I know, but they make me feel like a girl and I’ve missed feeling that way.

January 01, 2008

Happy New Year!

My plan is to spend some time cozying up with my computer today in order to get caught up with some posts that have been bouncing around in my head for the past couple of weeks. These holiday weeks have been a whirlwind of family and friends, visits and parties and lots and lots of cooking and eating, and have forced me to leave any writing by the wayside. Now I have four days of vacation left before school starts so hopefully I will have some time to get my thoughts on paper…or in this case, the screen...before it all starts over again.

I actually had time to write one sentence on December 27th…"I met with the radiation oncologist last week." He assessed my progress physically and we talked about how things were going. His diagnosis is that I am doing well and I am on track to see him again in six months. It felt strange to say goodbye and to know that I wouldn’t be back for such a long time. His office has been one of my favorites. Obviously I’m happy that I don’t have any medical reason to go back, but I will miss the doctor and nurses there nonetheless.

A week later I was scheduled for my post-treatment diagnostic mammogram. I scheduled it for mid-day on December 26th and in hindsight that was the right way to do it. I was so busy in the days leading up to the appointment that I hardly had time to think about it, which was good because I was much more nervous about it than I wanted to admit. I was afraid that it would hurt since my tumor site is still rather tender, but I was also terrified that they would see something else, that maybe there would still be cancer there. The last time I was in that office was right after I found the lump back in April and the news wasn’t good.

The nurse was kind and chatty and told me all about her ovarian cancer scare as she bustled around taking pictures. Her attitude put me into cocktail party conversation mode, so I didn’t have much of an opportunity to think about the last time I was in the same room. And it didn’t hurt any more than a regular mammogram. The worst part was that she had to keep taking some of the images over and over and over again because of the amount and depth of scar tissue in my breast. Apparently it is difficult for them to see what they need to see because of it, and this is something that I will always have to deal with.

Once it was over I left the hospital and put it all out of my mind. I knew there was nothing else to do but wait for the results and I didn’t want to spend my time worrying about what they might be. I didn’t have long to wait, however, because Patty from the oncologist’s office called me a day or two later to let me know that the results were good. There is no cancer indicated on the films. According to all the available technology of the day, I am truly cancer free. And I think that’s a great way to end the first post of a brand new year that I am hoping will bring nothing but clean scans, good health and blue skies.

December 05, 2007

The Long and Short of It

With kudos to Anne-Marie for finding it, here is a picture of weekly post-chemo hair regrowth as documented by Karin Stack.
HS_grid.jpg

I started to do something similar with my own regrowth, but as you can see from the 4th picture there's not much for the camera to catch yet. I can see it coming back, but you can't unless you're standing right next to me. I promise to document my own regrowth as it becomes visible to more than just me.

I can tell you that it feels like it is taking way. too. long. to come back!

November 29, 2007

Next Steps

This was my last week of classes this semester. Up next...finals.

On one hand this semester feels like it has been the fastest one yet. On the other hand it feels like it has lasted for a year.

I have begun reviewing some of my notes in order to start my outlines, and I am beginning to realize how much I must have had going on in my head during the last few months. I don’t even remember discussing some of the things I have written down. I’m not sure if that’s chemo brain, or just the fact that I had a lot on my plate throughout the semester. Either way, it looks like I have some ground to make up in the next couple of weeks to prepare for these tests.

I saw the oncologist on Monday and he said that I look “pretty much perfect.” I need to have a mammogram done in the next couple of weeks and then I won’t see him again until February. I’m really happy to get to take a break from medical procedures for a few weeks, but it’s a little bit scary to think of being “on my own.” He warned me that there’s a high probability that the radiologists will see “something” on my mammograms in the near future and that they will recommend a biopsy. He explained that this was mostly because I had the bracytherapy radiation. Since it is a relatively new procedure, my mammograms will look different to them and they will recommend a biopsy to evaluate those differences. He told me not to freak out when that happens. And I’m glad he warned me about it, because I would (will?) freak out.

I am still feeling better and better with each passing day. As a matter of fact, I mostly feel completely normal. And then I catch sight of myself in the mirror and realize that I still look very much like a cancer patient, even if I don’t really feel like one. It’s a strange place to be…looking sick but not feeling or being sick.

I am going to be attending a conference in Milwaukee this weekend and I talked to one of the conference organizers about it earlier in the week. After I hung up the phone, I realized that it may have been one of the first times in the past many months that I have talked to someone who doesn’t know me as a cancer patient. She has absolutely no idea that I don’t have any hair, that I have been through a kajillion medical procedures in the past few months, or that I have spent the past few months identifying myself as a cancer patient to just about everyone I talk to. It felt good not to have that as a part of my identity, even though the gig will be up when I arrive at the conference tomorrow night. What I’ve been through will be pretty obvious when they see the scarf and lack of hair/eyebrows/eyelashes!

November 25, 2007

You Say Tomato, I Say To-mah-to

I have been out and about more in recent weeks and as a result I have been running into people I know. I have been surprised by the number of people who, upon seeing that I look like I feel good, ask if I am “in remission.” And maybe that is an obvious thing to ask someone who has had cancer and is now better. I have found myself telling those people that I am not in remission exactly, but that I am instead currently cancer free.

The definition of remission is the temporary or permanent disappearance of disease. Complete remission means that there are no signs of the disease present in the body. Partial remission means that although there are some signs or symptoms of the disease, there has been a decrease in cancer cells. Often people think that if someone is in complete remission, they are cured and safe. However, while complete remission can signify that the cancer has been cured, there is always the possibility that it might come back. Based on those definitions, I suppose I would probably be officially labeled as someone whose cancer is in remission.

To me, though, the word remission makes it sound like the cancer is still there somewhere, lurking just behind the scenes and waiting to make a reappearance. I am sure that is why I automatically tell people that I am not in remission, but that I am cancer free. While that may not be technically correct, I am sticking with it because I prefer to think that, after everything that I have been through, there is no cancer left in my body.

November 19, 2007

Acing the Test

I have another thing to add to the very long list of things I am thankful for this season.

This morning I spoke with the doctor who did my genetic testing and found out that my test results came back as “no mutation identified.” In layperson’s terms, that’s a negative.

My breast cancer could have been caused by a gene. This result does not mean that it was not genetic. But it does mean that it was not caused by a gene that scientists can identify and test for as of today. That’s the best result I could have received.

For me, that means that the odds of me getting breast cancer again are lower than they would be if I carried the BRCA 1 or 2 genes. It means that for now I get to keep my breasts. It means that I really can close the book on this chapter and begin the work of moving on.

And I think I’m even happier about what it means for Karly. And my sister. And my cousins. And my mom. And my potential grandchildren.

November 15, 2007

I Am Done

Today marks exactly two weeks from my last chemo treatment. Today would have been a treatment day, but I didn’t have to go back to the green vinyl chair. I didn’t have to get hooked up to an IV and watch the poison slowly drip into my veins. I won’t have to deal with pain and nausea this weekend or a slow recovery next week. There will be no more hair loss or mouth sores or constipation or inability to taste or painkillers or steroids or exhaustion.

It has taken all this time, but I think it is finally starting to sink in that I am done with chemo.

November 14, 2007

Recovery Update

I keep getting a lot of questions about how I’m feeling and I realize that I haven’t talked much about that recently, so I thought I’d better post an update.

I am feeling good…much like myself most of the time (except for a few lingering side-effects such as neuropathy and a lack of hair, among others). I get tired very easily, however, and I have to remember that I am not actually back to “full strength” quite yet. It’s easy to forget that sometimes because I feel better and better each day, so I end up overdoing it if I’m not careful. My hair is growing, although I think calling it “hair” at this point might be stretching it. What hair I have is still very fine and light blond and only about 1/8 of an inch long. It’s still pretty sparse up there…you wouldn’t be able to see it unless you looked very carefully. But there’s more of it everyday and it is getting longer.

I had a doctor’s appointment on Monday for a CBC and all my counts were very low. They didn’t give me Neulasta after my last treatment because they didn’t need my counts to recover before another treatment, so I was on my own. Since the counts were so low on Monday, the doctor ordered a shot of Aranesp which helps to bring the platelet counts back up. That particular shot really hurts going in, so I wasn’t thrilled about it. I have to go back for another blood test next week and then I have a follow-up appointment with my oncologist the week after that.

I went to a yoga class today for the first time since my short-lived attempts at exercise when I first started chemo. I was a bit frustrated because I couldn’t hold the poses very long and I don’t have much strength in my arms or legs. The teacher was very kind, though, and told me afterward that she had modified the whole class just for me. Even without a full range of motion or much strength, it felt really great to move and was very relaxing.

This is all far from over, of course, but I feel like the world is slowly beginning to return to its normal orbit and I feel hopeful that things will soon all fall back into place.

November 11, 2007

Las Vegas Recap

Las Vegas was sunny and warm and as relaxing as we could make it. We spent a lot of time eating and sitting by the pool and a little time walking around. We had a couple of excellent meals, saw (a Cirque de Soleil show) and stayed in two different hotels (that story to follow in another post). Neither Randy nor I are gamblers, so the extent of our gambling consisted of the $15.00 I lost within 3 minutes while sitting at a slot machine in the MGM casino waiting for Randy to pick up our show tickets. My legs held out for the limited walking around that we did, although my feet suffered a bit from the cute shoes I wore to the show and to the scholarship award ceremony.

Before we left, I threw my brunette wig in the suitcase thinking that I might want to wear it instead of a scarf if I dressed up for dinner. And indeed, when I got dressed on Wednesday night I decided that the scarves I had just didn’t work with the outfit I was wearing so I put the wig on. It was great to have hair for an evening, even if the wig itself drove me crazy all night. I spent a lot of the time worried about it slipping backward or forward and was so relieved when I was finally able to take it off that night. It was a strange experience to wear it since I have hardly worn a wig at all since I lost my hair. Apparently I have gotten used to people looking at me because I definitely noticed that they weren’t looking at me that night.

Every time I see this I think it’s a picture of Randy and my sister, Molly.
Randy and the Brunette.JPG
Randy and some chick he picked up in Vegas.

The award ceremony (or what I thought was going to be an award ceremony) was held at the Hard Rock Hotel and Casino on Thursday night. I was told to be there at 7:30 p.m. and that my award would probably be presented around 9:00 p.m. that evening. Not knowing exactly what to expect, I dressed in one of my favorite lawyer uniforms complete with pearls, pumps and pantyhose.

Randy and I arrived at the Hard Rock early, so we snuck into Nobu for some champagne and sushi (which was amazing) and then sauntered over to the designated room around 7:00 p.m. or so. As soon as we got there I recognized Daniel Kovach, the man who runs CollegeScholarships.org, and introduced myself to him. We talked with him for a few minutes and got the run-down about what was going on during the evening.
With Daniel Kovach.JPG
With Daniel Kovach.

Continue reading "Las Vegas Recap" »

November 05, 2007

Crazy Sexy Cancer...Crazy Sexy Motherhood

I heard about Kris Carr’s book and documentary about her battle with a rare, incurable cancer (epithelioid hemangioendothelioma--yeah, I don't know how to pronounce it, either) a couple of months ago. I mentioned her in this post, and have since read her book, seen her movie, and last week I watched her on Oprah. Her story is amazing and fascinating, and she is truly inspirational in many ways. She was diagnosed at a very young age and has spent the last four years fighting for her life. She has explored medical procedures, diets, spirituality, and new age healing in her quest to live. Her message is positive and attractive—take control of cancer, don’t let it control you.

Because she was so young when she was diagnosed, she has had to deal with things that many older cancer patients don’t have to deal with, such as questions about whether she will ever get married or have children. One thing I have learned about dealing with a serious illness is how significant a patient’s age is in how they deal with the diagnosis. Each stage of our lives brings a completely different perspective to such a diagnosis.

I enjoyed Carr’s book and documentary and I think that there is a lot that cancer patients—and indeed, anyone—can get out of her work. Her message is universal in many ways and can be applied to many different situations. I would recommend this book to anyone who is facing a cancer diagnosis or some other serious illness or who knows someone who is. I want to stress that there is a lot I like about Carr, her book, and her website and that I have gotten a lot of great information from her work. The entire time I read the book and watched the documentary, however, I felt like it was directed at someone other than me. Her experience is informed and shaped by her youth in a way that makes it dramatically different from mine in many ways.


Continue reading "Crazy Sexy Cancer...Crazy Sexy Motherhood" »

November 04, 2007

Catching A Break

It seems that the universe decided to give me a break this weekend, although I’m almost afraid to write that in case I jinx it. I seemed to have skipped right over Excruciating Pain this weekend and gone straight to Minor Aches and General Bad-Feeling. But general bad-feeling is so much better than pain. (The fact that the previous sentence makes sense is a good indication of what I’ve been through. It’s all relative.) Instead of feeling sorry for myself and willing the pain to go away, I spent a lot of time yesterday and today thinking about all the things on my list of things to do as soon as I feel better. That is a big change from previous weekends when I just thought about getting through the week and to the next treatment.

Next up: Vegas, baby!

November 02, 2007

Lessons in Pharmacology

The contents of my medicine cabinet before cancer:
Pre-Cancer.JPG


A sampling of the contents of my medicine cabinet, linen closet and cupboards today:
Cancer Meds.JPG


I'll be having a big "flush the drugs down the toilet" celebration as soon as possible!

November 01, 2007

The End

…of the chemo chapter, anyway. It’s not really the very end. I still have lots of doctor’s appointments in the future…check-ups and port flushes and blood tests, etc. But today was the last time that I will ever have to get hooked up to an IV to receive chemotherapy drugs. Hopefully for the rest of my very, very long life. I don’t feel as excited as I thought I might, but I do feel hopeful. I am hopeful that everything I have been through since April has been worth it, hopeful that all the cancer is gone from my body, hopeful that, barring any buses coming out of nowhere, I will make it to my 100th birthday. (And it's not the end of my blogging...I'm just getting started!)

Today’s appointment was great…the doctors and nurses and other patients were all excited about my scholarship win and told me all about how they told their relatives and friends to vote for me, and everyone was excited that this was my last chemo appointment. I was able to talk to my friend Jane the teacher for a long time, which was wonderful. (Both Janes were there today, but one left just after I arrived so we didn’t get to talk very much.) I made chocolate cake for the staff, which was a big hit, and the nurses jumped in and helped me with the vial of blood for the genetic test—one of them even offered to call FedEx for a pick-up of the package! Those nurses are so wonderful…I will miss seeing them each week as much as I won’t miss the chemo.

Now that chemo is OVER, I feel like I can look forward. Up until recently, I hadn’t been looking much past today. Not because I thought I wasn’t going to make it to today, but because everything that has happened in the last seven months has been very intense and all-consuming and has left me little time for contemplation of anything else. It’s been as if I was in some kind of strange cancer time-warp. It feels like it’s been two years of dealing cancer, and the time before my diagnosis seems like it happened years and years ago.

Most of my classmates have spent the fall lining up summer (or permanent) employment. I’ve hardly thought about next summer and what I’m going to do. I should be sending out resumes and trying to line something up right now, but the thought of going on an interview with no hair or eyelashes or eyebrows is terrifying to me. I would have to decide if I was going to explain the bald head or just let it be an elephant in the room. And we’re talking about a pretty conservative industry here, so I’m certain that the way I look would have an impact on any hiring decisions. I would have to explain that by the time May rolls around I will look and feel “normal.” Would I pull out an old picture of myself to show a potential employer how I look when I don’t look like a cancer patient? Would they have questions about my ability to perform? I’m not quite sure what to do about this.

I also feel like I can look forward to bringing some normalcy back to our house. Without treatments and blood tests and recovery days we can all have a more active social schedule. I can start planning for the holidays and preparing for finals. Once I feel better, I can start exercising and really working on the diet changes I’ve been starting to make. And I can start watching my hair come back, which will be really wonderful.

I know it’s going to be a long road back and that I’m not totally out of the woods yet, but I hope the worst of it is over. Now if I can just get through the weekend….

October 28, 2007

Genetic Update

I met with the geneticist on Friday and she didn’t talk me out of the genetic testing so I decided to do it. She gave me a testing kit which will allow me to have the blood drawn (just one small tube) during my (last!) chemo treatment on Thursday. After that I will pack it up and send it off to the lab myself and then will have the results in a couple of weeks.

The good thing about the appointment was the chance to learn bit more about how all of this works genetically. There are three possible results for the blood test: positive, negative, and variant of uncertain significance which basically means “inconclusive”. One interesting point is that even if the test is inconclusive or negative, it doesn’t mean that there is not a genetic element to this. The test today only tests for BRCA 1 and 2, but doctors and researchers believe that there are more than just those two genes…they just can’t test for them. Yet.

Another important aspect of this, for me, is the fact that they don’t do the test for people under 18 because they require informed consent. I have to admit that I was relieved when the doctor told me that, because it gives me time to think about all of this before I have to even consider having Karly tested. If my result is positive, insurance would probably pay for her to be tested, as well. However, as an added comfort the doctor suggested that she really wouldn’t need to be tested for another decade or more, and pointed out that by then we will know so much more about breast cancer and about the genetics of all of this that it will be a different process. That also made me feel better. I don’t know if we will wait that long, but I do know that the older she gets the more say she will have in whether or not she wants to have the test done. We will just cross that bridge in the future when we come to it.

Some of the same questions remain for me, such as what to do with a positive result. I am pretty sure I know what I will do with a positive result, but I am just going to glide for these next few weeks and try not to even think about any of it until I actually receive the results. If it’s positive, I’ll figure it out then and then my mom/sister/cousins can also decide what to do with the information.

October 25, 2007

My Favorite Pair of Genes

Tomorrow morning brings yet another appointment with yet another new doctor—a geneticist.

Only 5-10% of all breast cancers are genetic, but because of my age (young!) and because my first cousin, Jenny, had breast cancer when she was very young, all of my doctors have recommended that I consider genetic counseling. The purpose of the genetic counseling is to help me decide whether or not to have genetic testing done to determine whether my breast cancer was caused by a gene. (Jenny had the test done, but I won’t share the results of the test here unless she tells me it’s okay.) I have already decided to have the genetic testing done, so tomorrow I will just be looking for reasons that I shouldn’t do it.

Genetic counseling is required before the test because there is a lot that must be weighed in making the decision. I have found that most people’s gut reaction is to have the testing done, but there really are some valid reasons not to do it. Genetic testing is controversial because the results can follow you for the rest of your life. For example, if it turns out that I am BRCA1 or BRCA2 (the name of the breast cancer gene, which also has been found to cause ovarian cancer) positive, those results will have an effect on my insurability for the rest of my life. In addition, I have to decide what I will do with the results. If they are positive, that means the risk of the breast cancer returning is significantly higher. So then I have to decide if I am going to have a prophylactic mastectomy (preventive removal of the breasts). And if I do, will I have one breast removed, or both of them? Or neither? And if I’m not going to have one or both removed, why get the testing done? What about my ovaries? Do I have those removed, as well?

Then there are questions about sharing the information with my family. If my results are positive, what does that mean for my sister? My mom? My cousins and their children? My potential future grandchildren? And what about for Karly? Do I have her tested? And what if her results are positive? Do I share that with her now or do I wait until she’s 20 or 21 or 25? What kind of burden would it be to be sixteen years old and to know that you carry a gene that may very well cause you to contract breast or ovarian cancer? What does my sister do with the information? Does she get tested? If it’s positive, does she have a prophylactic mastectomy?

I know what my answers to most of those questions would be, but having the test done isn’t all about me. Suddenly, with just one or two vials of blood, the rest of my family and future family is directly involved in a way they haven’t been before. I hope that the results are negative.

October 23, 2007

Getting Up...Slowly

This weekend followed the pattern of the weekends following the previous two Taxol treatments with a lot of pain on Saturday and lessening pain on Sunday. This time I’ve had more trouble recovering from the treatment, however. Yesterday I was glad that I didn’t have class because I never would have made it there and back. I felt bad…run-down, weak, sick. I made it to class today, but it was rough.

There are moments when the fact that I only have one more treatment sounds great, and there are moments when I’m not sure if I can do it one more time. I know that I can and I will, but I wish that last one would just disappear.

Side-Effect Update

I’ve mentioned before that Taxol can cause neuropathy…nerve damage in the hands and feet. I have had some numbness and tingling in my hands and feet, but it usually goes away before the next treatment. Hopefully that will keep happening. I’ve been taking 300 mg of vitamin B6 a day, which some doctors say helps to lessen or prevent neuropathy.

I have now lost all but about 5 of my eye lashes. While it’s not quite as traumatic as losing the hair on your head, it’s really unnerving. My face looks so white and moon-like now…even the kids have commented on how much I look like a cancer patient.

I continue to lose my ability to taste after my Taxol treatments, but it only lasts for a couple of days and then it seems as if I’m able to taste things fully again.

Another common side-effect of chemotherapy is early menopause. Most women go into premature menopause and some stay in menopause while some do not. As I understand it, the closer you are to your natural menopause the more likely you are to stay in menopause. I thought I was getting away with something when I didn’t go into menopause right away. Unfortunately, however, a few weeks ago I did indeed begin to go into menopause, complete with hot flashes and everything. And I hate it. It seems unfair to have to deal with this on top of all these other chemo side-effects.

October 18, 2007

Uno!

As difficult as it was to go to chemo today, I went. And it was difficult. Sherry made the perfect analogy in her comment on this post. She said that at the second to last appointment it's like being a marathon runner who sees the finish line but is running on pure spirit. It was hard to keep running today. But I did and now it’s over. I just have to make it through the next few days and I can officially celebrate having only one more treatment.

I took a movie to watch again this week (The Queen), but it was relatively short so I also got some chatting in. The room was full today, and I was lucky enough to sit between two women who wanted to talk as well.

The woman to my right was Jen. (I got permission to use her real name.) She is my age (a few months younger than me, actually) and was also a breast cancer patient. She had Stage II cancer with no lymph node involvement, but she had two tumors in one breast. The second tumor was discovered by an on-the-ball ultrasound technician who looked at her whole breast on a hunch and not just at the original tumor. She was on her second Taxotere treatment today.

Jen and I started out talking about my scarf because she is just starting to lose her shoulder length blond hair. She seemed much less angst-ridden about the whole thing than I felt when I was losing mine. Jen was delightful to talk to…very upbeat and positive. At the beginning of our conversation I was receiving Benadryl, and at one point I warned her that I might fall asleep in the middle of a sentence—hers or mine—because of it. Jen told me that she was also receiving Benadryl and that she too was worried about falling asleep. We finished up that part of our conversation and then we both took naps.

The woman sitting to my left was Jane. I met her at my very first chemo appointment and at the time she was a week ahead of me. We’re on the same schedule now so she actually had chemo today instead of just a blood test. Jane is an eighth grade math teacher and has continued to teach throughout chemo. We talked quite a bit about how difficult the AC treatments had been for us. When I was having those rough Tuesdays at school she was having rough Tuesdays, too, standing up in front of five classes a day full of 13 year olds, teaching math, no less! I am so impressed by her ability to do that. Jane is also very positive about this whole experience.

Jen and Jane and I discussed everything from hair loss and breast reconstruction to the discoveries of our lumps and the involvement and support of our friends and family. Talking to other cancer patients who are going through the same things that you are going through at the same time is quite powerful. People who are in the middle of this understand exactly what you feel without you even having to say a word. Jen summed it up well when she said that as much as she doesn’t like coming to the chemo appointments, she loves making all the new friends that she meets when she comes. I couldn’t agree more.

October 17, 2007

Writer's Block

One (of many) interesting result of this blogging scholarship contest is the incredible increase in traffic to my blog. Before Monday morning, October 8th, around 8,500 people had visited since May. As of today, almost 19,000 unique visitors have stopped by from all over the world. It’s amazing. And a lot of pressure. I suddenly find that I have a serious case of writer’s block. How can I possibly write things that are interesting and smart if there are that many people waiting to read what I write?

I once saw Alice Sebold (author of The Lovely Bones) interviewed and she said that she thinks there are two kinds of writers; those who think they are geniuses and those who think everything they write is awful. I fall firmly into the second category, and this little fifteen minutes of fame I’m experiencing doesn’t help. I suppose the best thing to do is to continue to write about the things that garnered me the finalist position in the first place….breast cancer, motherhood and law school. I have to make an effort to silence the editor in my head and the thought of all of you reading over my shoulder or else I’ll never write anything again.

Tomorrow I’ll be heading to treatment #7…the second to last one. While I am happy that it’s almost over, I am also filled with dread about the upcoming weekend. I have been unconsciously pushing all thoughts of Thursday and the weekend to the back of my mind. It’s been easy not to think about since I’ve been feeling so great for the past week or so. Today, though, reality came crashing in as I realized I’d be making that old familiar trek to the doctor’s office tomorrow morning. I have found myself wishing that my doctor would call and say that I’ve been such a good patient that I don’t have to come back for the last two treatments. I know that’s not going to happen, but a girl can dream, right?

October 16, 2007

Think Before You Pink

Sitting on the window ledge above my kitchen sink is a little clay dish that Matthew made in art class a few years ago. For the past couple of years, from October until December, the dish has been filled to overflowing with pink Yoplait yogurt lids which get dutifully mailed to the company sometime in December. Why do I mail used yogurt container lids to Yoplait, you ask? Because they have promised that they will donate 10 cents for each lid they receive up to $1.5 million to the Susan G. Komen foundation as part of their Save Lids to Save Lives campaign. Until last week, I was just washing the lids and putting them in the dish and that was about the extent of my thoughts about the campaign.

Recently, however, I stumbled upon a website called Think Before You Pink (maintained by Breast Cancer Action, a San Francisco-based company that provides educational information about breast cancer), and suddenly I’m looking at that Yoplait lid campaign—and all of the pink breast cancer awareness marketing out there—in a whole in new light. The gist of the Think Before You Pink website is that with the deluge of pink marketing going on throughout the year, it’s not a bad idea to think about where the money from those pink ribbon products is actually going.

Think Before You Pink hopes that before you open your wallet to buy these product you will ask yourself six questions. These questions are:
1. How much money from your purchase actually goes toward breast cancer?
2. What is the maximum amount that will be donated?
3. How much money was spent marketing the product?
4. How are the funds being raised?
5. To what breast cancer organization does the money go, and what types of programs does it support?
6. What is the company doing to assure that its products are not contributing to the breast cancer epidemic?
This page on their website goes into detail about what kinds of answers you should look for to each of those questions.

After finding this website, I read a little further and found that those innocuous Yoplait lids stacked up on my kitchen windowsill led me to some answers to those questions that I wasn’t so excited about.

For example, take question #6. It turns out that Yoplait makes its yogurt with milk from cows treated with rBGH, a bovine growth hormone that has been linked to an increase in breast, prostate, and colon cancer. I knew about this connection and have been buying milk from dairies that do not use rBGH, but I never thought about our yogurt containing the same hormone.

Think Before You Pink calls this practice “pinkwashing,” and applies the term to companies that market a pink ribbon product for the benefit of breast cancer research or awareness while manufacturing products that are linked to the disease. Other pinkwasher companies in Think’s spotlight include BMW (chemicals in car exhaust have been linked to breast cancer) and Estee Lauder (parabens used in cosmetics have been linked to breast cancer). Kind of puts a whole new spin on pink ribbon marketing, doesn’t it?

What do we do with this information? The Think Before You Pink website lists possible actions we can take to help combat pinkwashing. For example, they suggest buying non-rBGH dairy products and they even provide a link to an artificial hormone-free product guide broken down by state and published by www.foodandwaterwatch.org. The website also suggests letting the companies you patronize know if you feel strongly about their responsibility to keep their products safe.

While I appreciate any and all efforts to educate people and to find a cure for this disease, I think that the pink marketing has gotten out of hand. We are swamped with pink, especially in October, almost to the point of numbness. I think the Think Before You Pink campaign can help us all to be more educated, savvy consumers and to make sure that any dollars we spend on pink marketing are actually going to the breast cancer cause and not just to the coffers of some large corporation.

I want to make it clear that I support the desire of large corporations to donate to charities and I have no problem with marketing campaigns designed to highlight their charitable works, as long as the campaigns are transparent and the companies are really donating substantially to those causes. I still plan to send in my Yoplait lids, because 10 cents is better than no cents. (I have also donated directly to the Susan G. Komen foundation which is a much more direct way to get funds to them than just by eating yogurt.) But donating millions of dollars to breast cancer research doesn’t excuse Yoplait—or any other company— from their responsibility to produce a product that doesn’t harm consumers. My next trip to the grocery will almost surely involve a stop at the yogurt case where I will be looking for a new brand of yogurt for my family to consume that does not contain rBGH milk.

October 13, 2007

Desperately Seeking Reality

I had never watched a single episode of Desperate Housewives before last Sunday night. I was left alone in the family room with the remote control and the dogs all to myself that evening, however, so that the testosterone laden members of my family could watch the Chicago Bears game on the big screen in the basement. Given the choice, I decided not to subject myself to first downs and field goals and began looking for something else to watch. Pickings were slim, so I ended up watching the show.

I had been told that one of the characters had breast cancer and I was hoping that would be part of the story because I was curious about how it would be depicted. After doing a little bit of research this week, it appears that Lynette, the character with cancer, actually has Hodgkin’s lymphoma. However, it sounds like the type of cancer she has hasn’t been mentioned in the script since the end of last season, so viewers seem to be a little confused about exactly what kind of cancer she is supposed to have.

Now, I understand that this is a sitcom and that it is about as divorced from reality as it can be, but having a character deal with a cancer diagnosis seems to me to show some little attempt to ground the plot in some semblance of real life. I had several problems with the whole cancer storyline, however, and I’m not quite convinced that the writers were really attempting to show a cancer diagnosis rather than just using it as a vehicle for the treatment of other plot goals. I have to admit that I know very little about Hodgkin’s or non-Hodgkin’s lymphoma or about how the treatment for those cancers is similar to or different from the treatment for breast cancer, but from what I can tell Hodgkin’s patients and survivors are as flummoxed by the reality of the cancer storyline as I am.

During the course of Sunday night’s show Lynette had two chemotherapy appointments. She kicked her husband out of the first one because he was being insensitive and then asked her friends to accompany her to subsequent appointments. As far as I could tell, though, the show only covered a couple of days. Why was she having chemotherapy so often? And if she was having treatments that frequently, why was she feeling so great? Yes, she was wearing a scarf on her head. But she had eyebrows and eyelashes and she looked completely normal.

And it wasn’t just her hair...she’s battling an awful disease. Where was her suffering and pain and nausea and bottles of drugs to combat the side-effects? What about all the time out of her life for treatments and blood tests and other doctor’s appointments? Where were the oncology nurses and why was she drinking coffee and eating lemon meringue pie right after her treatment? When her friends saw her outside walking around right after her chemo treatment and asked her how chemo was going, her response was, “It’s not that bad.” Huh?! I want her treatments!

I am not saying that it’s all suffering all the time or that a one-hour sitcom could possibly depict all the difficulties of having cancer, but it would be nice to see a little more reality injected into the whole thing. It’s so much more than just being hooked up to an IV for a couple of hours. My descriptions of the experience on this blog are at about 43,000 words so far, so I think it’s safe to say there is a little more to it than that.

The good thing about it is that I know this is a popular show and that there are millions of people seeing a woman walking around in a scarf every week on TV whose friends are upset about her diagnosis of breast cancer. That’s something, anyway, and maybe in some way Felicity Huffman’s character will make it more mainstream to see a cancer patient on the street. But maybe the producers need to remove the scarf altogether and let her be bald.* And maybe they need to write in a flashback showing her reaction when all her hair falls out or an episode where she experiences a drop in her white blood cells and an infection and a subsequent trip to the hospital for antibiotics. The reality of cancer is so much more than sitting in a vinyl chair hooked up to an IV. In fact, that might be the easiest part.

Yes, I know, it’s Desperate Housewives. Maybe I need to stop looking for reality in black comedies and instead give in to watching the Bears beat the Green Bay Packers. Now that’s reality TV.

*I’ve been told that she did remove her scarf in the season opener to show her bald head. I still think the producers should let her be bald for more than just one scene.

October 12, 2007

Feeling Like A Winner

When I received the e-mail on Monday morning telling me that I was a finalist for this blogging scholarship, I decided that I would post the information on my blog and that I would send out an e-mail to my family and to a few friends in order to try to drum up some votes. I envisioned that maybe I would be able to get a few hundred votes, but had no idea how many I would need to win or if I even had a chance to win. I was so happy with the supportive responses I received from those family and friends and I was grateful when they told me they were going to tell their friends. I never expected the incredible response my little vote request has received in the past few days, though. As this has gathered momentum it has grown and grown and it just takes my breath away.

You can read the comments I have received on the blog, but what you can’t see is the hundreds of e-mails that have also flooded my in-box. I have heard from people whose mothers or sisters or friends have had breast cancer. I have heard from many breast cancer survivors and from some incredible student mothers. I have received e-mails from friends I haven’t seen in months or years and from so many more people all over the country and the world, both people I know and people I have never met.

Many people have posted a link to my blog or to the voting page on their own blogs, including complete strangers. I am continually astonished at the number of people who have gotten behind this, even if they don’t know me.

For the first few days I tried keep up with all the comments and e-mails by responding with at least a thank you, but I am now so far behind that I don’t know if I will ever catch up. I am still hoping to be able to respond to all of you, but it may be awhile before I get through all the e-mails.

I don’t know how to begin to thank all of you for this amazing outpouring of support. My family and I are so grateful to each one of you for your efforts to help me win this contest. Your response has been quite stunning and I don’t have the words to tell you how it makes me feel. With or without this scholarship, just knowing that there are so many people willing to rally around us at a time like this makes me feel like I have already won.

Thank you.

October 10, 2007

I Am Not My Hair

I know, I know…another post about hair. Well, what can I say? I’m a bit obsessed with hair right now, seeing as I don’t have any.

My friend Rachel recently gave me India Arie’s most recent CD. (I love it, by the way, and highly recommend it!) I like the messages in her songs and the music is incredible. A little more than half-way through the disc is a song entitled I Am Not My Hair. The first time I heard it I thought about how appropriate the song was for me right now. And then she started singing about a woman who had breast cancer and lost her hair because of chemo, and I cried. The chorus of the song says it all, and it goes like this:

I am not my hair,
I am not this skin,
I am not your expectations, no.
I am not my hair,
I am not this skin,
I am a soul that lives within.

I think that losing my hair has given me a glimpse…albeit a minor, temporary glimpse…of what it must be like to lose a limb. I imagine, based on my own experience, that someone who has lost an arm or leg must think about arms or legs all the time, their own missing one as well as those of other people. I wonder if people who are missing a limb look at people who have all of theirs and think about their unashamed lack of appreciation for those limbs. You hear stories about people who have lost a body part feeling a phantom body part in its place and I have even experienced that. There are times when I find myself reaching up to sweep my bangs out of my eyes or to tuck my hair behind my ear, only to find that there is nothing there to sweep or tuck. It is a strange feeling to touch air where my subconscious expects to touch hair.

I have been super-conscious of the hair of other people since I lost my own. I look at the hair of both men and women with admiration and longing and jealousy. I am frequently struck by the fact that people don’t seem to appreciate their hair the way that I appreciate their hair.

WhyMommy wrote recently about having dinner out with her husband and watching women walk past the place where she was sitting, touching and worrying about their hair and their appearance. As I read her post, I felt like she was reading my mind. As I have watched women deal with their hair and clothes and makeup over the past several months, I always think about how beautiful they all are and about how they don’t even realize it. I am frequently awed by the millions of colors and textures and styles of hair in the world in a way that I have never been before.

I often reminisce about the days when I felt like my hair looked simply awful. It wouldn’t do what I wanted it to or the weather prevented me from styling it in a certain way or a hair cut was growing out and it looked hideous to me. If I could go back to one of those days and give myself some advice, I would point out that the worst hair day imaginable was better than having none at all. I think that I will never have a “bad hair day” again for the rest of my life.

These thoughts about the beauty of hair lead effortlessly to thoughts about the standards of beauty in our society. I have spent a lot of time over the past several years talking with all three of my kids...especially my daughter…about the ways in which beauty is depicted in the media. We have talked about air-brushed photographs and the wiles of advertisers. I have pointed out the ways in which the people in our lives don’t look like the characters on TV and in movies or like famous actors or models, and about how the people in our lives are quite beautiful nevertheless.

Despite these conversations and my convictions about the problems in advertising and the media, I have found that it has been necessary for me to redefine everything I thought about beauty over the past several months. To look in the mirror and see a stranger…someone who doesn’t conform to her society’s standards of beauty…and to accept and to love that stranger as me has been one of the most challenging things I have ever done. To face that person everyday and to see what truly makes her beautiful has been very difficult and at times heart wrenching.

In this constant assessment of my own beauty, I have found myself assessing the beauty of complete strangers in a different way. I look at someone who doesn’t meet society’s standards of beauty and wonder why people don’t see him or her as beautiful. I saw a woman at the train station yesterday who was not especially skinny and who was wearing rather frumpy clothes. Her makeup was slightly garish and her hair was a dull, over-processed blond in an out-dated style. That entire description, however, is based upon what most Americans consider “beautiful” and “stylish.” Most of you would not have thought of her as either of those things.

But she is beautiful. She may be a wife and mother, and I’m sure her husband and kids think that she is beautiful. She is definitely a daughter, and I’m willing to bet that her parents think she is beautiful and amazing and that they love her more than anything. She may be a brilliant banker or lawyer or professor, and I’m sure her clients or students or co-workers appreciate all the beauty of her mind and her talents. Or maybe she works in a retail store somewhere downtown and her customers appreciate her kindness and attention while her co-workers appreciate her hard work and willingness to take on the difficult jobs at work. Although her blouse seemed rather plain and frumpy to me, she probably took great care in choosing it when she got dressed in the morning. Her hair may have been over-processed, but she apparently likes the color and style, and had obviously spent some time getting it that way before she left the house. She is a woman, just like me, and she laughs and loves and desires and plans and talks and cries, just like me. She is not her hair, she is not her skin, she is not your expectations. She is a soul that lives within.

So this cancer diagnosis has given me something else. I like to think that I have always been able to see beyond the surface of people and to see who they really are underneath their hair and makeup and clothes. Being unceremoniously stripped of a feature that I took for granted as a part of what made me beautiful, however, has turned my assessment of true beauty upside down. I will never again look at my own appearance in the same way, and I will never again forget to look beyond the appearance of others in order to truly see the soul that lives within.

October 08, 2007

On the Road to Recovery

This past weekend was another rough post-Taxol weekend. Everything happened exactly as it did the first time, and there is some comfort in that; it’s good to be able to predict how I’m going to feel on any given day. The discomfort began on Friday afternoon, and by Friday evening it had turned to pain. This time I took pain meds before I went to sleep which helped me make it through the night. The meds didn’t seem to lessen the pain, but they knocked me out and allowed me to sleep through it. By Saturday morning I was in a lot of pain.

The best way to describe it is to say that it is like that all-over achiness that you sometimes get when you have the flu. (I think. I actually never get that achiness so I’m just guessing it feels like that.) However, it’s more painful than mere achiness. Every single inch of my body hurt on Saturday. It hurt if I pressed a finger against my arm or my chest or my scalp or my leg. My bones hurt, my muscles hurt, and even my skin hurt.

By Sunday morning the pain began to lessen, and by last night it was mainly just in my hips and legs. This morning my legs and hips hurt, but the pain continues to lessen bit by bit. If things continue as they did last time, I expect to still have some discomfort through Wednesday but it will be a little bit less each day.

As for other side-effects…there aren’t too many. My ability to taste was off a little bit on Friday night and Saturday, but gradually returned throughout the day yesterday. I still can’t taste fully, but it is not nearly as bad as it was with the AC. I am also still very tired, but I have come to the conclusion that I’ll be dealing with that until I’m finished with all of this. I also experienced a bit of numbness in my hands and feet this time, which is a common side-effect of Taxol. It seems to be getting better today, but I will continue to monitor it.

But here’s the good news. My hair is coming back. A week or so ago I began to notice very fine, thin hairs growing in the completely bald patches on my head. At first, I chalked it up to my imagination. I thought that because I wanted it so badly I was probably just seeing hairs where there weren’t really hairs. As the week progressed, however, more of those little baby hairs have appeared and now I only have one completely bald patch left on my head. (And even that has a few hairs covering it.) I’m not sure if you would even be able to see the hairs unless I pointed them out to you, but they are definitely there. They are dark blond as far as I can tell…we’ll see what happens as they fill in.

There’s more good news, too, which I will share with you in a separate post.

October 04, 2007

Treatment #6

¾ of the way through. 75% completed. That’s how far along I am officially after today’s treatment. It isn’t the end, but it is finally starting to feel like there’s a light at the end of the tunnel.

Today’s waiting room music was quite different. I think the station may have been some kind of a pop station…the song was 1234 by Feist. I can’t find anything particularly symbolic about that one, but it was a good change of pace.

I am tired tonight, but I am feeling good so far. The last time the pain didn’t start until Friday night, so I’m hoping I’ll make it through the day tomorrow before it I have to deal with it this weekend. The doctor told me today that if I rested more during the bad part, I would probably have any easier time next week. I will definitely try to take his advice.

I watched a 3-hour movie today during my treatment (Tess—the old one with Nastassia Kinski). The movie was a great way to pass the time, but when I’m plugged into my laptop like that I miss out on chatting with the other patients. In addition, the Benadryl made me really tired so I don’t think I would have been much of a conversationalist, anyway.

Even though I didn’t do a lot of talking, I was able to make some observations. I was struck, once again, by how really incredible oncology nurses are. I think that the woman sitting next to me was there for maybe her second appointment. She had just had a port put in and was going to have the stitches removed this afternoon. The problem was that the area was still really tender and that there were stitches right over the place where they needed to access the port. There were about four nurses standing around her chair consulting and trying to figure out whether they could use the port or whether they would need to access a vein through her hand. They determined that they couldn’t use the port because of the stitches, and the poor woman burst into tears. The nurses were so amazing. They surrounded her, murmuring supportive words, and they knew exactly what to say. One nurse held her while she cried and another held her hand and one wiped her tears. What was amazing to me was that this was not gratuitous or false sympathy in any way…they were absolutely sincere. You could see it in their faces and hear it in their voices. They knew instinctively precisely how to handle the situation. Every other patient in the room was touched by the scene, because we were all so grateful to the nurses for handling the situation perfectly.

Once the woman got herself under control enough to talk she apologized and said that she had been having a lot of trouble with each stage of her treatment so far and that she thought that it was all just getting to her. She also said that she was upset because she just found out that her neighbor had cancer. She stopped the sympathetic murmurs of the nurses though and told them that she didn’t even really like the woman because she was so mean, but that she was still upset about the diagnosis. (This made everyone in the room laugh.) And to top it all off, she then told them that she was also upset because her friend had been in a car accident this summer in which both of her legs and one of her arms were crushed. She lost her arm from the shoulder down, and had spent the summer going through rehab for that.

Another woman came in who did not have a port and the nurses were concerned about using the vein in her arm for chemo because it was bruised from another recent needle stick. They decided to use her hand instead, but had a hard time getting a vein in her hand. They were so patient and gentle with her, as they always are, and they took their time getting her hooked up, but they did it eventually.

I could never do their job. It takes a really special kind of person to be a nurse, and a really incredible kind of person to be an oncology nurse. They are the key part of any oncology practice and in many ways are more important than the doctors. I haven’t met one nurse at my oncology practice who is not friendly and kind and personable and knowledgeable. They always make my visits easier and I am so thankful for all of them.

October 03, 2007

Here We Go Again

Tomorrow brings treatment #6. I am not dreading it in the same way that I dreaded the AC, but I am definitely not looking forward to it. The fact that I have felt great for the past couple of days makes it even harder to contemplate the upcoming weekend. I have been warned that the Taxol effects are cumulative for some women, and that makes it even worse.

I have packed a movie to watch and I’m taking some books to read, but no homework this time. I’m hoping that the time goes quickly both tomorrow and for the next few days. And this time I have promised myself that I will take stronger pain medication if I need it rather than just suffering through like I’m some kind of pioneer woman.

October 01, 2007

Myths About Breast Cancer

Today is the first day of National Breast Cancer Awareness Month. The Chicago Tribune ran an interesting article this morning about a new survey commissioned by the National Breast Cancer Coalition which suggests that “awareness” is not where we should be focusing our efforts. I think that makes sense…everyone is certainly aware of breast cancer at this point. The pink ribbon marketing fever seems to be everywhere these days; the market is saturated with pink. The president of the NBCC says that education is the key, and that education should begin by dispelling some myths about breast cancer that people hold.

Here are a few of the myths listed in the article:

• Most breast cancer cases are caused by heredity.
o FALSE! Only 5-10% of breast cancers are caused by a gene. 90-95% of breast cancer cases are NOT hereditary, even if you have breast cancer in your family.

• Breast cancer can be prevented by eating enough fruits and vegetables.
o FALSE! There is no good evidence that this is true. (Personally, I think it can’t hurt to make healthy lifestyle choices as far as diet and exercise go, even if that hasn’t been proven to prevent cancer.)

• Breast cancer can be prevented.
o FALSE! There are a few things women can do to reduce the risk of developing the disease (such as not drinking alcohol or taking hormones), but the risk can’t be eliminated altogether.

• Self-exams and mammograms prevent death from breast cancer.
o FALSE! Self-exams and mammograms reduce the risk of dying of breast cancer, but they do not prevent death from breast cancer. Finding it early is not always enough to save our lives. In addition, mammography screening is less effective in younger women (under 40) than in older women.

Here are some other facts about breast cancer from the NBCC website:

• More women in the United States are living with breast cancer than any other cancer (excluding skin cancer).

• Breast cancer is the second leading cause of cancer death for women in the U.S, after lung cancer.

• Factors that increase a woman's risk of breast cancer include older age, genetic factors, family history of breast or ovarian cancer, long menstrual history, nulliparity (having no children), older than 30 years of age at first full-term pregnancy, daily alcohol consumption, use of combined postmenopausal hormone therapy (PHT), postmenopausal obesity, and ionizing radiation. Factors that decrease a woman's risk of breast cancer include breast-feeding and physical activity (exercise).

• Although scientists have discovered some risk factors for breast cancer, the known risk factors account for only a small percentage (~30%) of breast cancer cases. There are few interventions with limited value that reduce risk, and none of them prevent breast cancer.

The NBCC’s website is a great site to visit to learn more about breast cancer. You can read more facts about breast cancer here, and here is their home page.

Click here to read a great post about breast cancer by my friend Ree.

Click here to read WhyMommy's post about IBC.

September 29, 2007

Susan G. Komen Race for the Cure-Chicago

Today was all about pink ribbons.

It was amazing. There were thousands and thousands of people in Grant Park this morning for the Komen Race for the Cure and most of them were walking or running in the race. My dad and I could see the start of the race from where we stood and we watched as a sea of people started heading uphill at the beginning. Twenty minutes AFTER the start of the race, and four minutes after the first runners had already crossed the finish line, there was still a sea of people heading uphill to start the race! (They were the walkers, but it gives you an idea of how many people were there!) It was incredible to see so many people in one place all dedicated to raising money to support breast cancer research. I didn’t join the other survivors for recognition or breakfast or a picture since I wasn’t running, but I can’t wait to participate with my whole family next year.

Komen Group Small.JPG
I am very, very lucky to get to go to school with such totally cool people.
(Back Row, L to R) Mason, Carla, Jackie, Leslee, Kirsten, Laurie, Blair
(Front Row, L to R) Blake, me, Colleen
(Not pictured: Olivia and Tim)

Blake at Komen Small.JPGBlake Back Small.JPG
I couldn’t be more proud of Blake for wanting to run today. He did a great job and finished in 24 minutes. (He started about 3-4 minutes behind the finish line, so we don’t know exactly what his actual time was.) As one of my friends said, he “dominated” the law students and finished before any of them. He wore a card on his back that said he was running in celebration of me and my cousin, Jenny.
Update: The race results have been posted. Blake came in 4th in his age division and was the 100th male over the finish line. Go Blake!!

(As always, you can see larger versions of these pictures by clicking on the Photo Gallery link in the column on the right.)

And as a special treat, here's a video montage of the morning's festivities.

Click here to see Carla's pictures from the race.

September 28, 2007

Feeling Better

I’ve gotten several phone calls and e-mails in the past couple of days expressing concern at how I’m doing, so I thought I’d better let you know that I’m feeling much better today. Almost “normal,” in fact. (Whatever normal is. I’m not sure any more.) Each day after Tuesday was gradually better, and I attended both classes with no problem on Thursday.

Looking back now, I think I should have just stayed home on Tuesday. I’m pretty sure all the walking around parking lots and climbing on and off trains and buses made my legs hurt even more than they would have otherwise. I can’t quite stomach Stella’s motorized cart suggestion. I already look like a geek with my rolling school bag and my recently increased penchant for elevators. My fellow students would probably start calling me Grandma if I started zooming around the city with a little motorized cart. I am NOT there yet!

Other than the pain and exhaustion, the Taxol side-effects are so much easier to handle than the AC side-effects (so far). No nausea, no loss of appetite, and just a minor change in my ability to taste. In fact, I think I almost have my full ability to taste back. It’s hard to tell if I can actually taste food the way I used to be able to or if it’s just dramatically better than it was while I was on the AC. One way or the other, I think the chemo-diet is over. And that is definitely a good thing.

Tomorrow is the Chicago Susan G. Komen Race for the Cure. As you may remember, several of my awesome law school classmates will be running tomorrow, and Blake is going to run with them. (Karly wanted to run, also, but she is spending the weekend in Madison with her grandparents.) My dad and I will be going to the race, too, but neither of us will be running. Instead, we’ll be waiting at the finish line, cheering everyone on. Hopefully I’ll have pictures to share after the festivities tomorrow. You can still make donations to Carla's fundraising efforts by clicking here if you want to, and you can also help fund mammograms FOR FREE by clicking on the pink ribbon symbol over on the right hand side of the screen before you leave here today!

September 25, 2007

Rough day today. I went to school but I only attended one class and then came back home. My legs really hurt and I forgot to take any Advil with me and I felt tired and weak. I’m chalking that up to low red and white blood cell counts. I knew at the train station this morning that it was going to be a rough day and probably should have just gotten in my car and come back home then.

September 24, 2007

Putting One Foot in Front of the Other

I felt better on Sunday, although I was still in some pain. It was concentrated in my legs and hips yesterday, though, instead of all over my whole body. Today I still have an echo of pain in my legs and hips, but it is much more manageable and seems to be lessening bit by bit as the day progresses. I am also very tired, but have somehow managed to get my homework done.

Up to this point, the Taxol has been very different from the AC, which is exactly what everyone told me. So far I have felt much better with the Taxol. Although I hurt this weekend and wasn't able to move very much, I didn't feel completely knocked out of commission by the medicine. That probably doesn't make much sense since I was pretty much out of commission, but I find that it's much easier for me to handle pain than it is to handle feeling terrible and sick. Other side effects include the inability to taste (but it's not as extreme as it was with th AC), constipation, and the continued thinning of the rest of my hair (eyebrows and eyelashes). No mouth sores or loss of appetite so far (knock on wood).

I was assigned to prepare oral presentations for both of my classes for tomorrow, and today I e-mailed one of my professors to ask her if she would not call on me tomorrow. On the Tuesdays after my treatments I have found that I struggle a bit both physically and mentally. It’s all I can do just to get downtown and go to class and get home again. She very kindly agreed not to call on me, which takes a load of worry off my mind. I also warned the professor in my other class that I might not be up to giving an oral presentation, and he was also very kind and considerate about it. I have to say that I HATE to ask for special treatment like that, though. That is so against everything that I am. It is really hard for me to admit and to accept that I am not up to my normal abilities and that I can’t do everything that I usually can. It’s just another reason for me to be angry with breast cancer.

September 22, 2007

Ouch

I felt pretty good yesterday. I even went to the grocery store in the morning. When I saw the nurses at the oncologist’s office in the afternoon for my Neulasta shot, they asked me how I was doing. I told them that I felt different, and better, than I had on the Fridays after my AC treatments. The best way to describe it, I think, is that after the AC I always felt like I had drugs in my system. Yesterday I felt relatively normal.

At about 7:00 p.m. last night, though, I felt my system start to slow down. I got very tired and then my hands began to hurt. By the time I went to bed, my back had started to hurt. Within the next couple of hours and then throughout the entire night, every inch of my body began to ache. You know how your muscles ache the next day when you’ve done some new kind of exercise? My entire body feels like that, from my scalp to the bottoms of my feet. I have taken Advil, which seems to help a bit, but for now I’m just trying to get through this. (I have the option to take a stronger painkiller if I want to, but am trying to avoid that if possible.)

September 20, 2007

Don't Stop Thinkin' About Tomorrow

Today’s waiting room music selection: Don’t Stop by Fleetwood Mac. Great oncology waiting room theme, don’t you think so? The music seems to have gotten less hard rock and more classic rock in the past few weeks.

I’m writing this from my green vinyl chair while hooked up to the Chemo Cocktail du Jour. I just finished a bag of Bendryl, and boy, can I tell. I went from 80 mph to 5 mph in about 15 minutes or so.

While I was on the AC, I took Decadron (a steroid) for three days following my treatments. I was also given a steroid via IV during each treatment. I took one pill twice each day for those three days and as you probably read, they messed up my sleep every time.

This time I have to take the same pill, but I take 5 (!) of them the night before chemo and 5 the morning before. I took the pills as directed last night and then woke up around 4:30 a.m. jacked up! My mind was racing and I couldn’t lie still, so I got up at around 5:00 a.m. I spent the morning feeling great. Full of energy and able to take on the world…almost normal. I also couldn’t shut up. (I know, I know. What’s new, right?) Rachel drove me to the doctor’s office this morning, and I talked throughout the entire ride. Rachel, in her infinite wisdom, didn’t even attempt to get a word in edgewise. I apologized when we arrived, but we’ll see if she comes back to get me later this afternoon. If she does, I bet she’ll be wearing earplugs.

I was so hyped up this morning that even the doctor commented on it. He told me that I seemed more “up” today than the last time he saw me. I think his assessment had something to do with the way I said, "Okay." in a rapid staccato after every single thing he told me. I attempted to do some Con Law reading when I sat down to start my treatments but quickly discovered that I couldn’t concentrate because my mind was racing, so I gave up and decided to compose a post instead.

When I arrived in the chemo room today my nurse, Patty, warned me that the Benadryl would probably bring me down from the steroid high and she was right. The moment it started to hit my system it brought me down. Way down. Now I’m so tired I don’t know how much longer I can write.

There are only four of us here so far today...one is Jane who I wrote about here (and she left a comment here today!). She looks great and she has hair!!! If you recall, she had long, thick red hair before chemo but it is coming back gray. It’s short and thick and makes me so excited to have hair again. She told me today that she can’t wait to feel the wind blowing it, and I completely understand. I told her that I wrote about her on my blog a few weeks ago and gave her the address so that she could take a look.

The woman sitting next to me is around 50 or so and is wearing a red wig (her natural, pre-chemo color) that looks like real hair as far as I’m concerned. She told us that when her hair came back in after chemo it was very thin and it was dark and kinky, so she opts to just wear the wig because it looks better. She didn’t have breast cancer but instead had some kind of bone/blood cancer. (I can’t remember what she said she had.)

It occurs to me that I should probably describe exactly what happens when I’m here for these treatments. My appointments usually start off with a visit with a nurse, Dahlia, who takes my vitals and asks about current medications. She and I seem to have fallen into the habit of discussing health food and our kids during these visits. (She has a 13 year old daughter.) After she leaves, the oncologist comes in and takes notes about my previous treatment and any subsequent side-effects, answers questions, and does a very, very brief checkup. Today I told him that I thought he needed to add Crazy Sexy Cancer Tips to the office’s patient library and he agreed and told me to tell the nurses about it, which I did. (They have a bookshelf filled with cancer books for patients to check out.)

After we’re done, he walks me out to the reception desk where Kathy (I’m convinced that she’s the one who chooses the radio station for the office) sets up my next few appointments. Once the calendar is filled in she walks me back to the treatment room where I choose a chair. After few moments, Patty comes in and hooks me up to an IV via my port. This consists of her poking a needle through my chest right into the port. She then flushes the port and takes a blood sample. It takes about 5 minutes for their on-site lab to run the tests, and once they determine that my blood counts are at the right level Patty starts the IV drip.

First I get the anti-nausea meds and this time that was followed by Benadryl and Pepcid to prevent any allergic reactions to the Taxol. With the AC, Patty would then sit on a stool next to me and administer it herself through a syringe (this is called “pushing” the medicine). With the Taxol, she just hooked it up to the IV. The nurses all kept a very close eye on me for the first 15 minutes of the Taxol administration, which is when I would have an allergic reaction if I was going to have one. (As I’m writing this, Patty just hooked up the Taxol…we’ll see what happens.) Once all the medicine is finished she takes the needle out of the port and I am free to leave.

(20 minutes later: No allergic reaction so far so they sped up the drip. Yay!)

The Taxol takes 3 hours to administer, so I have some time to kill. The Benadryl affects seem to be wearing off...I’m waking up a little bit now. And I’m hungry. (I brought my lunch with me today.)

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Post-treatment update: Today’s treatment was long but uneventful. I never felt up to reading homework again so I watched a movie instead. I watched South Pacific because my only choices from our home library were Disney movies or Rogers & Hammerstein musicals. It’s been a long time since I’ve seen it so it was an enjoyable way to pass 2 ½ hours. After it was over, the nurses told me that they wished I would have played the music out loud while I was watching it.

I finally remembered to take my camera today, so here’s a picture of me hooked up to the IV while sitting in one of the lovely green vinyl recliners that I love so much. (The port is located on the inside of my right breast underneath the white piece of gauze that you can see sticking out of my shirt.)
Small Kim at Chemo.JPG


September 18, 2007

Side-Effects R Us

Thursday marks my fifth chemo treatment and the beginning of Taxol. I am dreading it even more than usual because of the element of the unknown. Some people have told me it’s easier, but some people have warned me that it’s not that much easier. I’ve also heard that the side-effects last longer than the AC side-effects. And some people have an allergic reaction to Taxol which the nurses will try to prevent with Bendryl but which is still scary. Like everything else with cancer treatments, it is different for everyone and I have to just wait and see how my body reacts to it. At least the AC had become a familiar hell.

I have been told to allow 5-6 hours for the Taxol administration, and I have to admit that I am not looking forward to spending that much time in the oncologist’s green treatment room, no matter how many cool people I meet. I’m planning to take homework and other (fun) reading with me, but I am wondering if I should also run to the library for a movie to take with me to watch on my computer. Of course it won’t matter how much I have to do if I fall asleep because of the Benadryl, which is what happens to many people.

I thought I would take a moment to note some of the side-effects of the AC that I haven’t mentioned or that I have mentioned only in passing as a record for myself and just in case the list possibly helps someone else going through this.

Hair loss: I’ve documented this pretty well here…at least the emotional aspects of it. I haven’t mentioned that my hair eventually stopped growing a couple of weeks ago and that it continues to fall out. I still have some super-short hair on my head, but I also have lots of completely bare spots on my scalp. My eyebrows and eyelashes began to thin a couple of weeks ago and in the past few days I have lost almost all of my eyelashes. I thought the loss of the eyebrows and eyelashes would be at least as traumatic as the loss of my hair, but it really hasn’t been yet. Maybe because it’s easy to fake eyebrows and “eyelashes” with makeup.

I’ve been told that some women continue to lose any remaining hair during Taxol and that some women’s hair begins to grow back before they finish with the Taxol. Again, we’ll see how I react.

The hair on my legs is still growing, but only very randomly spaced pieces and only at the rate of about 1/32” per week. And one thing that no one ever mentions—but that everyone seems to be curious about--is pubic hair. In the interests of full disclosure, I’ve lost almost all of that, as well. One of the women I met at the oncologist’s office during my second treatment told me that I would also lose my nose hair and develop a chronically runny nose. She was dead on with that prediction, so I make sure I carry Kleenex in every bag I carry, right next to my Chlorox wipes and hand sanitizer.

Nausea: The nausea has had an interesting side-effect of its own. It has completely turned me off of some of the foods that I ate while I felt sick after my treatments. One of my books warned that this might happen and that you should be careful about eating your favorite foods right after treatment. I was careful not to eat my favorites, but I did eat some things while not feeling well that I kind of wish I hadn’t, because now I’m finding it difficult to eat them.

The nausea has also affected my ability to walk into the oncologist’s office. I’m usually okay in the waiting room, but as soon as I go into the treatment room and see those green vinyl chairs I find that I start feeling just a bit nauseous. In fact, if I so much as envision the room in my imagination it makes me feel a little queasy.

Fingernails: A recent development that has been bugging me is tender fingernails. It’s not actually my fingernails that hurt, but my fingers under my nails. It feels like they are bruised. I have only found one mention anywhere of anyone else who has experienced this kind of side-effect while on AC, but I have to assume that it’s somehow related to my treatments since it’s a new thing. My nails were pretty long and surprisingly strong throughout treatment, but I cut them all off the other day because it hurt to type with the nails hitting the computer keys. I don’t have the same problem with my toenails.

Eyes: Right after my treatments my eyes have been very dry. After a few days, however, they start watering and they seem to water all the time. I have also noticed that my vision is frequently blurry. It doesn’t really seem like my true vision is any worse than it normally is, it just seems like there is something in my eyes that is making it hard for me to see.

Exercise: All the “what to expect when you have cancer” books always say that people who exercise during their treatments have an easier time dealing with them than people who don’t. After reading that, I planned to continue to do whatever I could throughout my treatment to make sure that I made it easier on myself. However, I have found that exercise during chemo is much easier said than done…at least for me. It has been so hard for me just to keep up with any of my daily routines, and exercise has completely fallen by the wayside. Maybe I’ll feel more up to doing something physical with the Taxol, but for now I have checked exercise off of my to-do list.

Mouth Sores: You might recall that I tried cryotherapy during my last AC treatment to prevent mouth sores and it seems to have worked. I didn’t develop any of the mouth sores that I seem to have had after the second and third treatments. Whether that’s because of the ice or because I just didn’t get any, I will never (gladly) know. I did bite the inside of my mouth while chewing last week and it took several days for it to heal, but that’s not really the same as developing mouth sores.

There are many more, of course, most of which I’ve documented here as they occurred. If I think of any others that I haven’t mentioned, I’ll add them later.

September 14, 2007

Bravery, Redux

I've obviously been thinking a lot about bravery recently and I remembered today that I had already written about it awhile ago. (I write a lot of posts that I end up never posting to this blog for one reason or another.) I wrote this right after that first trip to school with no hair.

In one of her comments yesterday, PT-LawMom wrote:

[P]eople judge bravery not based on whether you think you're brave, but based on what they think they would do in your shoes.

Those were exactly my thoughts a month or so ago when I wrote this, but I forgot that I had come to those conclusions. I think that's because it is truly difficult--maybe it's impossible--to see yourself as brave. As I discuss below, I am certain that this is exactly how the people who we think of as heroes feel about their own actions.

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My friends Kathy and Connie both sent e-mails in response to my post about running the gauntlet on the train platform without hair. Both of them talked about strength and grace…my strength and grace…which seems to be a recurring theme from many people in my life these days. Both of them also commented about other people they know going through cancer or other hardships and about their strength in the face of something like that. Both of them talked about how those people deny that it’s strength or bravery, but say that “it’s what anyone would do.”

It’s hard to understand that statement, I think, when you’re not experiencing something like this. But it is true. I think it is what anyone would do. And to be honest, it doesn’t feel like strength or grace or bravery in any way. It feels like what I have to do. If this is strength and bravery, it’s nothing like what I thought those things would feel like.

When I contemplate my heroes, such as the soldiers in Iraq or Eleanor Roosevelt or Elizabeth Cady Stanton or firefighters, I admire their bravery in the face of danger or opposition. I am amazed at their ability to stand by their convictions and to continue on their chosen paths despite the difficulties they face. They are truly brave, in my opinion.

And yet I wonder now if perhaps they don’t (or didn’t) feel brave or strong, but if they just feel that what they do (or did) is what they have to do. Think about the news stories that we see on TV where someone rescues someone else from an awful or dangerous situation. In the interviews with those heroes, they always say that they don’t consider themselves heroes and that their actions were taken instinctively without much thought. I no longer think those statements are just an example of the hero being humble. It seems that bravery is only bravery to those who are outside looking in. My experience in handling a difficult situation doesn’t feel like the bravery I admire in other people. I don’t think any less of my heroes as a result of this revelation. If anything, I admire them even more, because I think that what I see as bravery and strength comes from somewhere deeper. It is much more than just steeling yourself for the battle. It comes from deep within you and is all caught up with conviction and belief and the ability, that I think we all have, to tap an inner well of strength and willpower. Some people tap into this reserve through their religious beliefs, some through more secular beliefs, but I think it is often a dangerous or difficult situation that allows us to find that well.

I think that as humans we are more resilient and strong than we know and that when you are faced with what you think is one of the worst things, you handle it because you have to. I find that I have untapped reserves of strength to handle this because of Karly and Blake and Matthew and Randy and my parents and siblings. At the very beginning of all of this Randy told me that he thought the kids are handling this as well as they are because they take their cues from me. It is imperative to me that I show my children that I am going to be okay, that I am okay, and that because of that they are safe and loved and that their lives will continue to be stable despite the upheaval of this cancer diagnosis and treatment.

But it’s not always easy. I don’t always feel strong. I have devastating moments of weakness and sadness and fear and anger, just like you would. They pass, and luckily, for me, there are more moments of strength, for lack of a better word.

What seems like it would be the most frightening about all of this, of course, is facing mortality. It is frightening to contemplate my death, and to have it be a very real possibility in a way that it has never been before. But it’s not really the most frightening thing when you have to face it. What’s worse is knowing that after December I just have to wait and watch and hope this cancer doesn’t come back in my breast or somewhere else in my body. It’s the idea of living with the unknown, waiting for the proverbial other shoe to drop, that is scary.

And even more frightening is the idea of leaving my children here to fend for themselves without me. Indeed, this is a paralyzing fear and something I have thought about every single day since I found the lump in April. It was my very first thought the moment I found the lump. I know that if I died they would be surrounded by friends and family who would love them and care for them. But I am their mother and that is little comfort, knowing that no one could ever love them the way that I do. It is horrible to think about not being here when they go to college, start careers, fall in love, get married, have children. They need me to be here for them. I need to be here for them.

I am astounded that so many of you seem to see something like strength or grace or bravery in my words. If that is what is coming across in what I write, then I am thankful. It doesn’t feel like any of those things most of the time, it just feels like the thing I have to do right now. I don’t think that I know any way to handle it other than they way that I have. And there is no planning out how I want to handle the next thing, whatever that may be. I have to take each day, each new side-effect, each new development, as it comes.

Where I do find strength and grace is in your words to me. You have all given me, and continue to give me, so much. Every single time I talk with one of you or read an e-mail or listen to a voicemail your words lift me up in ways that you might not even realize. I am so blessed to have the family and friends that I have. I have always thought that, but you have showed me the depths of your love and friendship throughout all of this, and I am humbled and honored and strengthened by you all every day, more than you will ever know.

September 13, 2007

On Bravery

I am constantly uplifted by your encouragement of my bravery in the face of all of this, but I think that I should probably clarify what you all see as courage.

Yesterday Stella left a comment about how far she thought I had come from hardly being able to look in the mirror to going to class with no head covering. And I think that when you read the stories and read my thoughts about being bald, it probably does look like I’ve come a long way. I want to make sure to state that I don’t feel as brave as the stories make me sound. Not even close. It is very frightening to go anywhere without something on my head. When I do go somewhere, I find myself even more sensitive than usual to the reactions of other people. I think that I see this as a test for myself. How far can I push myself? How far away from my comfort level can I get? It is still a shock when I see myself in the mirror or catch sight of my reflection in a window. I still don’t look like me, and that’s hard to handle.

I’m not quite sure why I feel the need to test myself this way, but I think it has something to do with trying to live with the hand that I’ve been dealt. I am never unaware of the fact that what I have been dealt is nothing at all compared to many other people. I see people living bravely with much more difficult situations than mine every single day. If they can do what they do, then how can I possibly not try to handle this one with something resembling strength and courage?

It’s not easy. On Monday night Randy and I attended a cancer fundraiser. For the past 37 years, Lou Malnati’s, a Chicago-based pizza restaurant, has held an annual cancer benefit. Proceeds from the evening go to cancer programs at Northwestern Memorial Hospital, Children’s Memorial Hospital and Gilda’s Club. This year Jim Belushi came and performed at the benefit with a Second City troupe. (Very unfortunately, I was exhausted long before the performance began so we left just as he took the stage and neither of us got to see him. Damn chemotherapy.) As I mentioned over the weekend, I decided that I would go to the dinner without a head covering. There were hundreds of attendees at the benefit, but people, for the most part, didn’t pay much attention to me and my bare head. Nevertheless, it was difficult to take my hat off after we arrived, to walk through the dinner buffet au naturale, and to stand next to other women looking in the mirror in the bathroom to reapply my lipstick. I imagine that people probably thought I was brave, but in reality I felt anything but brave the entire time I was there.

Despite the cold (today I am wearing a scarf AND a hat), I will continue to push myself to show my head in public. I feel very strongly about this being something that I can do right now—I can show people that this is what cancer looks like, and that it’s okay. Death most certainly does not arrive with the prognosis.

Kim and Matthew small.JPG
Matthew and me before the benefit

September 12, 2007

What Happened To Summer?

There’s a fall chill in the air here in Chicago already which has laid all my bold bald plans to waste. I planned to spend the day at school yesterday without a head covering, but I ended up staying covered up all day. I knew it was going to be a problem when I left the house in the morning…the thermometer read 54 degrees and despite my hat, it was painfully cold walking through that train station parking lot. I am amazed at how much heat my hair held in and at how chilled I felt all day long without that hair. I think I’ll just have to be bald in pre-arranged…and warm…places for the next couple of months.

I did start out in class with nothing on my head. I sit in the back of the room and I noticed that throughout the first several minutes of the lecture my professor kept looking up at me in the back row. I kept getting the sense that she was intrigued by my bare head…she’s only seen me in a scarf until now. We were discussing a case about optometrists and opticians (Williamson v. Lee Optical for my fellow law students) and at one point she made a statement about the regulation of eye care. However, she looked at me just before she uttered that sentence and it came out as “hair care.” She was a bit more flustered about her mistake than she should have been which confirmed my suspicion that she was definitely paying attention to my look. I couldn’t help laughing about it and I was sure to point out what preceded her mistake to my friend Kristi sitting next to me.

I only made it through about 20 minutes of class, however, before I realized that there was a serious…and cold!..draft in the room. Luckily I had thrown a scarf in my bag in the morning, so I walked down the stairs to the front of the lecture hall in all my bare-headed glory in order to go to the bathroom and put the scarf on. I am pretty sure that the professor must have noticed the number of eyes that drifted from her face to my head during my trek through the room.

Other than being cold all day, it was a rough day for me yesterday. I found myself so exhausted that I had a hard time concentrating on the class discussions and by the time I went to my second class I had a hard time staying awake. I continue to be concerned about my ability to handle school throughout this, but I do notice that I feel much more confident about it the week before my treatment when I’m feeling better than I do during this week after. I am sure that my level of confidence is directly related to how I feel on any given day, so I’m going to continue to soldier through for now and hope that I am able to keep up with everything.

Today I was back at the oncologist’s office for a blood test and as always my white and red blood cell counts are low….surprise, surprise. (Today’s waiting room music selection was The Doobie Brothers crooning China Grove.) I’m looking forward to getting over this hard part and getting on to feeling better as the week progresses.

(Note: I'm in the process of trying to change the look of the blog. Each change is a slow, painful learning process for me, however. If you stop by and see some weird looking colors/fonts/layouts, etc., just ignore them. Hopefully I'll have it figured out in the next several days.)

September 10, 2007

Race for the Cure

I received a wonderful e-mail from our friends Rob and Laurie in Colorado yesterday. They wrote to tell me that they both ran in yesterday's Race for the Cure in Colorado Springs. They said that despite the overcast skies in the morning, the location, the Garden of the Gods, was beautiful and the day was pretty awesome. And best of all, they shared this picture with me. Isn’t this the best?
Rob and Laurie before the race small.JPG
Rob and Laurie

Speaking of the Race for the Cure, my friend and classmate Carla has been working her butt off as the Master of Race Coordinators for the past few weeks. She has gathered together a team of our fellow friends and classmates who are planning to run in the Chicago Race for the Cure at the end of September, complete with team t-shirts and everything. You can contribute to Carla’s fundraising efforts by clicking here, if you’re so inclined. Every little bit helps and it takes less than 5 minutes to make a donation!

I am deeply honored by the efforts of these dear friends and I am thankful for their support and enthusiasm for this great cause.

September 09, 2007

Early Morning Thoughts

Here I am, once again, up in the wee hours and unable to sleep (thanks steroids!). I’ve been up since 2:30 a.m., out of bed since 3:30 a.m., but I’m not exactly being super-productive. I know, I know. That’s not the point…but I feel like I should be doing something with this time. I’m trying to look at it as found time rather than lost sleep. It's not really working. [7:30 a.m. update: I went back to bed at 5:30 a.m., tried desperately to go to sleep, watched the light in my room get brighter as the sun rose, then finally gave up on sleep altogether at about 7:00 a.m.]

So far this weekend has been playing out about like the weekends after the previous treatments, but with slightly more bone pain than last time. Friday evening I felt nauseous and exhausted. By Saturday the nausea was gone, but I didn’t really move from the couch all day yesterday. And the lack of appetite is still hard to deal with. I find myself having to force food down. I get hungry, but nothing sounds good. I’m living on chicken noodle soup and toast and protein shakes, none of which I can taste, and they’re all getting old.

Yesterday I spent a lot of time reading. Not reading for class, which is what I should have been doing, but just reading fiction and blogs and wandering around the internet. WhyMommy posted about the recent death of cancer fighter Jane Tomlinson. What an amazing woman! She was just one year older than me, was diagnosed with breast cancer in 1990, and it was diagnosed as incurable in 2000. Despite the diagnosis, she went on to run marathons and a full Ironman, among other things, during chemotherapy. That blows my mind. I can’t even imagine going for a walk these days, and she completed an Ironman. The quote I keep seeing attributed to her is, “Death doesn’t arrive with the prognosis.” I love that…it’s the perfect ode to the importance of finding life and yourself after a cancer diagnosis.

Another woman who is doing that in spades is Kris Carr. Kris was diagnosed with and is living with incurable cancer. Instead of sitting back and letting it take over, she took over and wrote a book and made a documentary about her search for a treatment called Crazy Sexy Cancer. It aired on The Learning Channel on August 29th and I heard her interviewed recently on an XM radio show. (I missed the TV show and there is no plan for it to air again. If any of you happened to Tivo it and still have the recording, would you be willing to make me a copy?) She’s incredible and inspirational and a living testament to the power of positive thinking and to taking life by the reins.

I also read an essay somewhere about the burdens of cancer, but I can’t find it now. I think it was on a blog, but unfortunately I’ve lost it. The author wrote about the guilt that cancer patients have to deal with…guilt at putting their family and friends through the pain of watching their loved ones deal with this awful disease. The words struck me, because that’s one of the things I’ve thought a lot about recently. I’ve watched and listened and observed how this affects my husband, my kids, my siblings, my parents, my extended family, my friends and my neighbors. I think that maybe one of the hardest parts of this is dealing with the knowledge of what I’m putting them through. How will this affect my kids down the road, for example? Will they carry this experience deep within them for the rest of their lives? How do I help them get through that? How do I reassure my mom and dad that I am going to be okay, when I don’t know myself if I’m going to be okay? (Because I know for sure that it would be much harder to watch your child go through this than to go through it yourself.) These are the thoughts that run through my mind at 4:00 a.m.

WhyMommy also wrote yesterday about her desire to do something. I think that many cancer patients and survivors must feel this way...I know that I do. There is something about dealing with this situation that makes you want to help. Like WhyMommy, when I’m feeling good I spend a lot of time trying to figure out what it is that I can and will do with all of this. I haven’t figured it out yet, but I’m sure that I will. Right now I feel like the thing that I can do is to show people what cancer looks like and that it’s okay. If all of this running around with big earrings and no hair can help just one person to feel more comfortable and less horrified at the thought of what cancer looks like, then all my angst and discomfort with the situation will have been worth it.

Randy and I are supposed to attend a cancer benefit on Monday night. I sent my mom out this weekend as a personal shopper to get me something to wear, and I’m planning to go dressed to the nines and bald. I have no idea if I’ll actually be physically up to attending, but I’m going to try. And I think that might the perfect place to display my head for all to see and to show people…people who are there to support research for this disease…what it looks like.

There are some amazing, inspirational cancer survivors and fighters out there. And it seems that each time I come across another story, I feel more and more lucky. I’m sitting here with these dangerous, poisonous drugs coursing through my system and I feel like I dodged a bullet. There are people living with so much more and going through so much more than I am. What’s a little temporary hair loss and nausea? By Christmastime I’ll have hair and, more importantly, I’ll have my life. I am one of the lucky ones. I get all the benefits of a changed outlook and a new lease on life…and I get to live that life.

September 07, 2007

Steppin' Out

I put on great earrings and dramatic lipstick and I went to the doctor’s office for my Neulasta injection with a bare head today. And it was completely okay and felt pretty good. People looked (in fact, several people did a pretty dramatic double-take as I walked by), but it didn’t matter to me one bit. The nurses and office staff were all wonderful and enthusiastic about my “natural” look. Too bad I live in northern Illinois; I probably only have a couple more weeks of actually being able to tolerate the temperature outside with nothing on my head.

Now I just need to stock up on some big, fabulous earrings. Most of mine are all way too small and conservative looking to pull off the no-hair look. It's all about the earrings, eyes and mouth when there's no hair on your head. Got that, guys? ;)

It's All About the Attitude

Yesterday’s last AC treatment was relatively anticlimactic. Or as anticlimactic as any chemo treatment can be, anyway. I’m so glad it’s over, and now I’m just hoping this weekend and next week go as smoothly and as quickly as possible.

As for side effects, yesterday after the treatment I felt the old familiar “living in oatmeal” sensation that I seem to get each time. But yesterday evening I felt much worse than I did after the first three. No nausea to speak of, just general miserable-ness. During the treatment, I had the same rare reaction I always have to the Cytoxan…that strange feeling in my head and sinuses…but it was much milder than the first three times.

I tried a new experiment during my treatment yesterday, as well, which the oncologist informed me would not work. The nurses thought it might and were interested to hear my results. A couple of weeks ago I ran across an article about a cancer patient who was treated with Adriamycin who ate ice chips or popsicles during his or her treatment to prevent mouth sores. I thought it was worth a try, so I stopped at McDonald’s for one of their 42 oz. cups filled with ice on my way to my appointment. (It was half melted by the time I actually received the Adriamycin because once I arrived at the oncologist’s office I realized that I had completely forgotten to take my Emend, an anti-nausea medicine that I’m supposed to take before my appointment. They didn’t have any samples in the office and the entire staff suggested that I would be much happier (and way less sick) if I took it, so I opted to drive all the way home, take the pill, and drive all the way back before my appointment. During the extra hour of commute time half the ice melted, but I still had more than enough to conduct the experiment.) I dutifully chewed on ice chips during the entire administration of the Adriamycin, and will let you know if I think it makes a difference.

This kind of thing actually has a clinical name: cryotherapy. The oncologist and my nurse, Patty, told me that their office used to use this same treatment during the administration of another chemo drug called 5-FU. As the medicine is being administered it flows throughout the veins in your body, including in your mouth. The theory is that if you place ice on the cells in your mouth while the medicine is flowing through those veins, supposedly it freezes those cells and somehow that helps to protect them from becoming damaged while the drug is affecting them. There was a time in the United States when a similar treatment was used to try to prevent hair loss during chemo. People would wear an ice cap on their heads for a certain amount of time and this was supposed to help. It has fallen out of favor here because it apparently didn’t work very well, but I believe it’s still recommended in parts of Europe. I’ll let you know what my results are this week.

I am quite certain that my favorite part of chemotherapy is talking to the nurses and other patients during my treatments. I am endlessly fascinated by the stories of the people I meet each time I go. Yesterday was no exception.

During the past two years, I have become quite used to being the oldest person in most of my classes by 15 or more years. At the oncologist’s office, however, I am by far the youngest patient in the room at all times by at least 10 years, and usually considerably more. I am definitely young to be going through this. Yesterday my next-seat neighbor was a woman who was probably about 70-75 years old. Her name was Rowena. (I did not ask her permission to post her name, but it fit her so well that I think it’s an important part of the story.) She was just a tiny little thing, but was the picture of casual chic in her cute gray t-shirt and fashionable sneakers and pink sweat pants. She wore all kinds of jewelry, from multiple rings to bracelets and earrings and was very tan. I immediately noticed her carefully tousled strawberry blond hair, since hair seems to be the first thing I notice these days.

Before she sat down, Rowena made the rounds of the treatment room followed by her husband, greeting the patients she knew and walking right into the nurses’ office cubicle to say hello. She carefully chose her seat location and then was warmly and enthusiastically greeted by each nurse who walked into the room. The reason for the warm reaction was immediately apparent: Rowena brings a lot of warmth and light into any room herself.

At one point (while I was supposedly reading but was actually observing the room and taking Harriet the Spy notes) I overheard her asking her nurse if I had breast cancer, and then exclaiming about how very young I was. Soon after that, we struck up a conversation. After asking about my cancer and treatments, she told me about hers. About 6 years ago or so she found out that she had colon cancer. She had surgery for that and then began chemotherapy. During her many blood tests during her chemotherapy treatments, her doctor noticed that one of the readings (her blood protein, I think) was not at all where it should have been and ordered more tests for her. She then found out that she had a rare blood cancer as well, completely unrelated to the colon cancer. She ended up having two different stem cell transplants and more chemo, and now she is on a “maintenance” chemo treatment. The doctors have been able to stabilize the cancer, but she has to live with it.

Her attitude and energy were truly infectious. Here is a woman who by all rights should be despondent…she’s been through colon cancer and now is living with an incurable blood cancer that she has to be vigilant about at a time in her life when she should be resting and enjoying the fruits of the previous years. And yet she is just as happy and upbeat as she could be. In fact, there is no doubt in my mind that she is enjoying the fruits of her previous years. The cancer treatments seemed to be, for her, just one more appointment on the calendar and nothing more.

September 06, 2007

The Half-Way Point

I'm getting ready to head off to the oncologist's office for my last AC treatment today. After it's done, I'll be half-way through chemo. I know that all sounds really great, but I am finding no joy in those thoughts today because I am dreading the next week or so. I don't want to do this again.

Over on the right hand side of the screen you'll see a new image of a pink ribbon accompanied by the words "Click Every Day." Before you leave my blog today (and every day!), please consider clicking on the image. The link will take you to TheBreastCancerSite.org and when you get there you will see a pink button at the top of the screen that says "Click Here." Clicking on that will take you to a page with a list of site sponsors. Just by clicking on the link and looking at their ads on the screen, some of the funding generated by those ads is donated to the National Breast Cancer Foundation. The NBCF uses the funds to provide free mammograms to low-income, homeless, and inner-city women who otherwise might not have access to them. Once you get to that page, you can even sign up for daily e-mail reminders to click on the link.

And while we're on the subject, when was your last mammogram? How about your last breast self-exam?

September 04, 2007

Thank You

Oh my goodness, you guys! Thank you all so much for all your support and encouragement. I am overwhelmed and heartened by all your love and kind words.

I actually left the house without a head covering today. Granted, it was just to take Blake to football practice so it wasn't truly out in public. But still, it felt pretty great.

I have been thinking so much about how I feel about being bald and about how other people feel about me being bald that I kind of forgot about Karly, Blake and Matthew's reactions to it. Blake told me today on the way to football practice that he might feel a little embarrassed if I decide to go out of the house without a scarf on. In all my angst and torment about this, I never thought about what it might be like to be a 13 year old boy with a bald mom. Probably not the greatest position to be in! He and I will have to discuss this a little more so that I can determine how he's really feeling about all of it, but in the meantime I have to keep that in mind.

September 03, 2007

The Big Reveal

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There it is...the photo you've been waiting for.

I'm having a hard time hitting the "publish" button for this post. I feel like I'm posting a nude picture of myself for the world to see. And I suppose in a way, that's exactly what this is. There's no hiding behind hair or a scarf or a hat.

Unwrapped...uncovered...revealed...exposed...this is me.

September 01, 2007

What A Difference A Couple Of Days Make

Despite the angst apparent in my last post, this has been a pretty good week for me. I never experienced the crash that I did after the first two treatments, so I felt better and better with each passing day. I actually went shopping with my mother-in-law today, and although I’m absolutely exhausted now it was good to do something not related to school or medical treatments.

I am feeling much better about all of this than I was the other day. Thank you all so much for your love and support and kind comments at a time when I really needed it. I debated about whether or not to post about such a low point, but I have them and they are as much as part of this as the high points. I wrote another post about my concerns about my appearance during that same time this past week and I have posted it below as a record of my thoughts even though I am feeling much better about that, too.

On Friday morning I saw my radiation oncologist because the skin above my radiation site has been getting more and more irritated and red over the past couple of weeks. He was concerned about it…and with good reason. It had become a wound that resembled a pretty severe burn. I left his office with all kinds of things for dressing a second degree burn and I am now back to caring for the site again to try to promote healing. He thinks that the chemotherapy has retarded the healing and that the skin cells that were damaged from the radiation are just now starting to react to the chemotherapy. I have to continue to care for the spot for another week and then go back to see him to make sure that it’s starting to heal. This is occurring because I had the radiation before the chemotherapy, and I’m not sure they have seen this precise reaction in Mammocite patients in this particular office before. They kept telling me that every situation is different.

I ended up giving an impromptu scarf tying demonstration in the radiation oncologist’s waiting room before my appointment. I never thought my mad scarf tying skillz developed as a Limited co-manager in the ‘80s would come in so handy. I was sitting in the waiting room reading Con Law when an elderly woman around 80 or so came out of an exam room and started chatting with the receptionist. She couldn’t have been more than five feet tall and wore a bright red shirt, white capris, and a bright red bandana on her head. I was half-listening to their conversation and admiring the older woman’s spunk, when she suddenly turned toward me and started to briskly cross the waiting room to where I was sitting. As she walked, she said, “Excuse me, can I ask you how you tied your head covering?”

I was wearing a beautiful new silk scarf that I found at Filene’s Basement in the city last week and I had it tied in the back with the long tails hanging down my back. I was happy to share my “technique” with her and in order to best demonstrate how to tie it I took it off and unfolded it so that she could see how big it was. The scarf is a large square which I fold into a triangle and then simply tie like a bandana behind my head. I showed her how to fold it and then put it on my head and turned my back to her so that she could watch me tie it. Suddenly I felt her hand on top of my head, pressing down on the scarf. Because it was silk, she was afraid that it would slip off my head and she was trying to help me keep it in place.

As this was going on, two other women approached us in the waiting room. Both of these women were in their 50s or 60s, and neither of them wore any head covering on their bald heads. One woman had a small amount of thin wispy gray hair and the other had very short gray hair. It quickly became apparent that all three of these women knew each other. They walked toward us and the woman with her hand on my head told them that I was showing her how to tie a scarf.

As they discussed various scarf styles, I found myself stuck. I couldn’t go any further in my scarf tying because the woman’s hand was still pressed firmly onto the top of my head and the scarf was stuck, but I couldn’t ask her to move her hand because she was in the middle of explaining why she needed to know how to do this. I sat on the couch with my back to her with my elbows in the air and my arms behind my head, holding the ends of my scarf together as I waited for her to take a breath so that I could ask her if she would please move her hand.

The other two women then began to ask me about my hair loss and told me about theirs. Both of them told me that they had decided to forego all head coverings and just to be bald. One of them said that she had decided early in her chemotherapy treatments that this was her now and that she would wear it proudly. The other told me that one day she woke up and decided she was tired of messing with head coverings and that she would just not wear anything anymore. They were incredibly inspirational and seemed so relaxed and comfortable with their lack of hair. Being bald didn’t seem to bother them at all. I needed to run into those women yesterday and it’s interesting how providence seemed to put them in my path when I needed them most.

I came home from my appointment yesterday and took off my scarf and spent the rest of the day at home just being bald. It was liberating and so much more comfortable than messing with a scarf or hat. I haven’t left the house with my head bare yet, but I’m getting there.

Keeping Up Appearances

Note: I wrote this post last Thursday when I was still feeling down about my appearance. I'm feeling much better about it now, but I wanted to post this as a record of my thoughts and feelings.

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You’re familiar by now with my recurring preoccupation with the way in which outward appearances are affected by cancer. As the weeks have passed since I shaved my head, I have come to realize that it’s not the reaction of others to my appearance which affects me most, but my own reaction.

My fellow commuters on the train platform have grown used to the sight of me and my head coverings by now, as have my classmates. The stares of strangers affect me much less than they did in those first few days without hair; actually, I hardly notice them now. But I still react whenever I see myself, and that reaction is hard to accept sometimes.

If you’ve ever gotten a dramatic new hair cut or color, you’ve had the experience of catching sight of yourself in a mirror or a window and being momentarily taken aback by the vision of yourself as a stranger. You have that moment where you think, “Whoa! Is that me?!” It takes a couple of seconds to reconcile the fact that although it’s your face looking back at you, you look completely different. But then, after a day or two, you get used to the new look and soon you don’t even notice yourself in the mirror or window. It is no longer a new look, but a part of you.

That acceptance hasn’t happened to me yet. I am still shocked by my “new look” when I catch sight of my reflection. It is shocking to me to see myself each time I remove my head covering. I think that I expected to become accustomed to this look, maybe even to embrace it and to be able to wear it with confidence. But each time I see myself I can only think about how different I look and about how the person looking back at me is not me at all.

I know, rationally, that it is temporary and that eventually I will have my hair back again, but that doesn’t make it any easier. The way I look to myself is a constant reminder of everything that I am going through. It doesn’t help that I also don’t feel like myself. I’m not comfortable with myself as a patient or as someone who doesn’t feel good most of the time. I am not comfortable with myself as someone who is always tired and has no energy and who sometimes can’t concentrate very well. But when I see myself in the mirror I can’t ignore or escape the glaring evidence of the fact that I am fighting a horrible disease and that it is affecting me. I can’t see the way I look as a fashion statement or even as something temporary. I can’t embrace it. Instead I think about how much I want my hair back and how much I just want to look like the me that I have seen in the mirror for the past 41 years.

At first I thought that my preoccupation with appearances was mostly just a result of our society’s preoccupation with the importance of appearances. I thought that this would be a good lesson for me in ignoring and overcoming those social norms and in learning how to be less concerned with my own appearance. I have discovered that for me it goes much deeper than what society says is the “right look” or even what I think is the right look. It is not about fashion. It’s not about what other people see and think; it’s all about what I see and think. For me, my appearance is an outward manifestation of what I think and feel about myself. My loss of control over that outward manifestation continues to be a struggle for me.

August 29, 2007

Girl, Interrupted

I was able to go to school yesterday and I made it to both classes. I took advantage of my friend Kristi’s generosity and hung out on her couch between classes, which really helped me make it through the day. I was exhausted by the time I got home, but at least I was able to attend class. I’m hoping that I can go again tomorrow.

My blood test today showed very low white and red blood cell counts…not that those numbers were any surprise to me. I still feel tired and weak, so I didn’t think the numbers would be high. The exhaustion is starting to get to me. I’m just tired of being so tired all the time.

I’ve been thinking for the past couple of days that I need to post an update, but I’ve been putting it off mostly because I’m getting tired of hearing myself complain about how bad I feel. It's all getting really old.

Today I’ve been thinking about how very much I want the old boring mundane normal parts of my life back. In a perfect world, I would be able to just continue on with things the way I always have with a couple of intermissions here and there for a treatment or for feeling sick one day. In reality, however, that just doesn’t happen. There’s nothing normal about cancer treatment. It is all-consuming. I have to think about it all the time and I am tired of there being little room in my head for anything else.

So much that is pleasurable and important in my life has been stripped away by this damn disease. I want to go to lunch with friends, but I’m too tired and I don’t have any appetite and can’t taste the food, anyway. I want to hang out with Randy in the evening watching the Food Network and drinking a Blue Moon out of a frozen beer mug with a slice of orange floating in it, but I’m not supposed to drink and have no desire to do so anyway and can hardly keep my eyes open past 9:00 p.m. I want to look forward to an amazing dinner at Bistro Wasabi or a night playing games or just hanging out with friends, but I don’t have the energy to go to dinner or even to be social. I want to be worried about getting my reading done for class and about making sure that everyone else gets their homework done and about keeping up with laundry and about how to get everyone to all of their activities during the week, but instead I have to worry about whether or not I’m going to feel half-way human on any given day.

Last night we went to the opening of a new local restaurant. It was the first time since I started chemo that I’ve done anything that resembles a social occasion. I spent a long time deciding what to wear and doing my makeup. Once I got dressed, however, I realized that I hadn’t planned ahead enough and that I had nothing to put on my head that would match my outfit. I tried on several different scarves, but couldn’t find anything that worked. So I changed my clothes and this time I chose the outfit based on what scarves I had. I couldn’t tie the scarf satisfactorily and I couldn’t find jewelry that worked with the whole ensemble. In the end, I didn’t recognize myself in the mirror. I am not a bald woman in a scarf with mismatched jewelry whose outfit is close but not quite all that she wants it to be. Usually I would love to attend an event like this, and I would relish the opportunity to put on something nice and to do my hair and wear great shoes and socialize with people. Not only was I frustrated with my inability to pull it altogether last night, but I was furious at the cancer for taking so much away from me.

The most difficult part of this, it turns out, is not the diagnosis or the treatments, but the loss of so much that I took for granted before and my inability to recapture those small parts of myself and my life.

August 26, 2007

Hanging In There

Yesterday, two days post-chemo, was a rough one. I felt nauseous and generally bad all day long. I’m feeling better today…at least I’m not nauseous and that is definitely a good thing. This morning I have been working on homework and am very happy to have the strength and concentration to do that. I also had Peapod deliver groceries this morning, which seems like a luxury but one that I can well justify right now, I suppose.

I’m trying not to worry too much about what this week is going to bring, but I’m really hoping that I’m going to be able to make it to school on Tuesday and Thursday. I’m working very hard on the whole “one day at a time” thing, but I’m still finding it difficult to suppress the planner and organizer in me and to just go with the flow.

I contacted the administration at Loyola on Friday morning about the upheaval in my Thursday class schedule and my need to have both of my classes taped every other Thursday for the last four treatments. They were, as they have been throughout all of this, efficient and generous and had the whole thing approved for me before noon. I am immensely relieved that I don’t have to worry about missing more classes and very thankful to be a student at Loyola right now.

August 24, 2007

Round 3

I am happy to report that my third chemo treatment is officially under my belt. Only one more AC treatment to go, not to mention whatever side-effects I am destined to suffer through in the next week or so. It doesn’t sound like a lot on paper, but it feels like a lot from this side of the table.

Yesterday’s treatment was about the same as the others. I had class in the morning and then returned to the suburbs for my treatment. It was actually a relief to get to go to class before chemo, because it completely took my mind off my absolute dread of the treatment. The privileges and immunities clause of the 14th Amendment is worlds away from Adriamycin and Cytoxan and mouth sores and blood tests and was a welcome distraction.

While I was at the doctor’s office sitting in my fancy green vinyl chair hooked up to my poison drip, I talked briefly with a 60 year old woman who was just finishing up her treatment when I arrived. I’ve seen her in the office before…I think she’s almost done. The first couple of times I saw her at the beginning of the summer she was bald. Yesterday she had hair. Very short hair, granted, but hair nonetheless. I also talked briefly with another woman who I have met before who is exactly one week ahead of me in her treatment schedule. She was there for her weekly blood test. She looked great, and told me that she teaches middle school math and that yesterday was her first day back at school. She has chosen to wear a wig when she teaches, and we laughed about how very hot and itchy and uncomfortable they are. She thought it would be easier for the kids if she did that and that they would be less uncomfortable.

I did get some bad news from my oncologist yesterday...or at least what I consider bad news. He told me that the Taxol treatments (treatments 5-8) take 5 hours to administer and that I am going to have to start them in the morning in order to have enough time to finish them. This means that I am going to have to miss both of my classes every other Thursday instead of just one. I explained to him how delicately balanced my schedule is and asked if I had any other alternative, perhaps to switch my treatment day from Thursday to Wednesday. I can’t do that, though. Since my treatments are every two weeks we can’t deviate from the schedule. It is really important, apparently, to have them exactly two weeks apart. He did tell me that I could get my treatments somewhere downtown instead, but that doesn’t really solve the problem. I would still have to miss part of my morning class to do that and then I would end up 50 miles away from home at rush hour. I think I am just going to have to ask my school to tape the morning class as well as the afternoon class on those Thursdays. And I’m sure they will, but I hate having to ask. They’ve already done so much for me.

A few observations I want to note for my own future reference…

--I have described the way I feel after my treatments as being in a fog or trying to live in oatmeal. Everything feels really slow and sluggish. Last night I decided that it feels a little like having a couple of drinks, but without feeling drunk. My mind feels slow and unable to process things quickly and I feel as if I can’t really communicate very well. This sluggishness begins to happen sometime during the treatment and lasts for several hours afterward. Yesterday I was reading for my Constitutional Law class during my treatment. I started out okay, but about half-way through I realized that I was no longer comprehending what I was reading. So I put that book away and picked up some lighter reading instead.

--When Suzy cut my hair a couple of weeks ago she left a little 1-2 mm fuzz on my head. Much of that fell out over the subsequent days, but I still have some hair left on my head. And it is growing. I actually have to keep up with it, because it gets so long that it pokes through my scarves. Unfortunately it seems like the only hair that’s growing is the hair on the very top and in the back in the middle of my head. I think if I let it grow I could have a really awesome Mohawk. If people stare at the scarves, can you imagine how they would react to a Mohawk? It would be a pretty weak and patchy Mohawk because only certain spots grow. There is also hair on the sides of my head, but it is a really faint blond fuzz. I am going to ask Suzy to take a look at it and see if she can predict how it would look if I let it all grow. Wouldn’t it be awful if I had shaved my head for nothing? I don’t think that’s the case, but I am beginning to wonder if I’m actually going to lose it all. I know that I have promised to post a picture sans head covering, and I will. I don’t have one to post yet, but will have somebody take one soon.

--My trip downtown was much less traumatic for me yesterday, thanks in large part to all your supportive comments after my last post. People on the train platform didn’t seem to be looking at me quite as much as they did on Tuesday, and I definitely felt more confident. I noticed both on Tuesday and yesterday that once I am in the city people seem to look and stare much less than they do here in the suburbs. The population in any large city is so much more diverse, and the people who live and work there are so used to seeing other people who are “different” in so many ways. I don’t think those differences have quite the same impact on them as they do on people who live in smaller towns. There’s probably a very interesting sociological study in there somewhere.

--This is not an observation about me, but I want to point out the outstanding news my friend and fellow breast cancer fighter WhyMommy got yesterday. She is having chemotherapy before surgery for her IBC, and she found out yesterday that the chemo seems to be working. The signs of cancer are diminishing. She also posted some interesting information about IBC and her treatment here and here if you are interested.

August 21, 2007

Back to School

Today was my first day back at school for the fall semester. I stood on the train platform this morning with my bag packed with freshly sharpened pencils and new highlighters, blank notebooks, empty folders, and wearing a scarf on my head. I was surprised at how much it took for me to get out of my car in the parking lot and then to walk past my fellow commuters to my chosen spot on the platform. They looked at me; how could they not? Out of the 50 or more people waiting for the 7:05 train this morning, I was the only one wearing a scarf on my head. The only woman who didn’t have hair. And it was hard.

As I stood there waiting for the train, I thought about all the times I’ve tried unobtrusively to steal a glance at the guy in the wheelchair or the woman on crutches or the little person, the person with the breathing tube or pronounced limp. What did I think about those people when I saw them? I couldn’t remember exactly, standing there in what felt a lot like a spotlight.

People didn’t stare at me, but they looked. I could see the movement of their heads out of the corner of my eye and I could sense their eyes on me as I walked by and as we stood there. I don’t know if they felt sorry for me or if perhaps I made them think about their mother/sister/wife/friend with breast cancer (or any kind of cancer). I didn’t meet their eyes, I just let them look. What else could I do, after all? As Stella said not long ago, my hair loss has made me the Chemo Poster Girl. Whether I wanted that role or not (and for the record, I didn’t), I’m stuck with it for awhile.

I will see these same people every Tuesday and Thursday morning from now through December. I know, from experience, that generally it will be the same group of commuters on the platform each morning and that we will all get to know one another by sight. (Most of them already know one another by sight…not everyone has a new schedule every six months like I do.) I think they will stop looking, although some of them may note the fashion show of scarves and hats which I will surely provide. And perhaps by December they will note the gradual return of my real hair. It will get easier for all of us, I think. And maybe the next time they see a woman wearing a scarf, they won’t have to look or to wonder in quite the same way.

The rest of the day was relatively uneventful, although it was certainly exhausting. My professors seem to be good and there are several people I know in both of my classes. I am also working as an editor on a journal this semester, so between the classes and the journal work and, of course, the chemo, I should be busy.

I should mention that everyone at my school, from the administration to the professors to the students, has been wonderful throughout all of this. For example, I will be missing one of my classes every other Thursday afternoon so that I can make it back to the suburbs in time for my treatments. My school has agreed to videotape those lectures for me and then to send the tapes to me via an overnight delivery service so that I don’t miss any class. Both of my professors this semester have offered their assistance to me, and one of them even offered to come to my house for private study sessions if I felt I needed them. (I’m assuming that no one told him before he made the offer that I live 50 miles away from school!) Many of my classmates have offered class notes and outlines to me, and one even gave me a set of keys to her apartment, which is one block away from school, so that I can take naps between classes if I need to. My gratitude to all of these people knows no bounds. They are all making it possible for me to continue with school despite all that I am going through.

During previous semesters I have always used my commute time as a study hall, getting lots of reading done during the hour and a half ride into and back out of the city. Based on my level of tiredness on the way home today, I have a feeling that the time will be better spent as naptime this semester.

August 18, 2007

Bouncing Back

The rest and antibiotics have kicked in and I am feeling much better today. I’m still tired, but that seems to be the recurring theme of my life these days so that’s no surprise. I lost my ability to taste anything again right after my last treatment, but it seems to be coming back today. Last time I was able to taste again for a couple of days before my treatment, so I’m hoping that happens again and that I’ll have a couple of days of pleasurable eating before I start the whole thing over again next week.

I have to admit that after this last week, I am getting worried about how I am going to be able to handle school during all of this. I was hoping that I’d feel fine and healthy during my non-treatment week so that it could just be a normal week, but so far that non-treatment week has been anything but normal. I do have only two more AC treatments, so it’s possible that my non-treatment week after Taxol will be easier and that I only have two more of the bad weeks to deal with. I just have to play it by ear, I think, and see what happens, but that is difficult because I am so much happier when I have a plan. This whole thing has been such a lesson for that Julie the Cruise Director in me. It’s hard for me to let go of the whole “plan ahead and for any eventuality” part of my personality.

Yesterday I was feeling well enough to venture out to the grocery store. I needed to go because we had two slices of bread and about ½ a cup of milk left in the house and although I seem to be able to subsist on soup and water, the rest of the family needs a little more than that. All three kids wanted to go with me, which I had mixed feelings about. I seem to spend twice as much and bring home a lot of stuff containing Unpronounceable Ingredients and Sugar when they are with me, not to mention the fact that Blake and Matthew tend to see a giant store with many shelves as some kind of personal paint ball arena. My fears were unfounded, however, because they turned out to be immensely helpful.

Karly drove us all there and parked straight in the parking space on her first try. Inside the store, Matthew pushed the cart and Karly and Blake ran reconnaissance and rescue missions around the store for various items on the list. Between the three of them, we covered the store in record time and I was saved from having to do all the running myself. We still ended up with a lot of things that weren’t on the list, but the trip was much easier than if I had done it myself.

Before we left the house, I put one of my scarves on my head. Karly suggested that I wear one of my wigs instead and at first I declined. She convinced me to do it, however, arguing that a trip to the grocery store where I probably wouldn’t see anyone I knew was a good opportunity to try wearing one to see what I thought about it. I decided she was right, so I wore the partial wig with a baseball hat. The partial wig only has hair from the side of the head above the ears down so that you can add any hat or scarf of your own on top.

And it was okay. The wigs feel so fake to me, as if I am playing a role or dressing up for Halloween. I did feel like I was wearing a costume, especially since I so rarely wear hats, but it wasn’t as bad as I thought it would be. It was hot and itchy and I took it off as soon as I got home, but it was bearable while I was at the store. I still don’t think I will wear them very often, but I also think that if I’m going shopping or to the grocery store or to a movie I might throw one on if I don’t feel like dealing with a scarf.

August 16, 2007

Two Steps Forward, One Step Back

Update: I was back at the doctor’s office this morning with a fever and another blood count showed that my white blood cell counts are at nearly 0. The doctor told me that normally in this circumstance he would send a patient to the hospital, but that I could choose to take an oral antibiotic instead. Needless to say, I chose the oral antibiotic over a hospital stay. I have instructions to watch the fever and to go straight to the hospital if it continues to spike. I’ve spent the day camped out on the couch resting and wishing that I would just feel normal again.

Yesterday was rough…I’m assuming it’s the anemia that made me feel weak and tired all day. I managed to take Blake to school for a walk-through/open house, but I didn’t do much more than that all day. I didn’t feel as awful as I did after the first treatment, but I was still not happy with my body’s inability to do much of anything.

And last night I was up throughout the night with excruciating mouth pain. The cells in our mouths…and all through the entire GI tract…are rapidly dividing cells just like hair cells and cancer cells, so their ability to reproduce is often compromised during chemo, resulting in mouth sores. I made the big mistake of eating tomatoes yesterday evening (I’m supposed to avoid acidic foods like that) and of flossing my teeth last night. I paid for it all night and am still paying for it now. I think the fact that I caused the sores by my own actions makes it worse…I could have avoided this by not eating the tomatoes and by not flossing, since I knew this was a possibility.

August 14, 2007

Mommy's Alright

Today’s oncologist waiting room music selection: Surrender by Cheap Trick. And I’m beginning to think the songs they play are meaningful and symbolic after all.

I was at the doctor’s office bright and early this morning for a blood test, and Mommy’s definitely alright today. Or at the very least, a whole heck of a lot better than she was the Tuesday after her first treatment. My body is responding much better this time than after my first round of chemo.

My blood counts are down but they are not at 0. I’m exhausted because I’m anemic, but the nurse’s recommendation was to increase the iron in my diet. She also said that although I might respond this way after the next treatment, it also might be worse. And I already knew that. Some people experience a cumulative effect with chemo where each treatment gets harder than the last. I’m going to try not to worry too much about that for the next week or so and just enjoy feeling not awful.

Today’s excursion to the doctor’s office was my first venture out in public sans hair, and I was a bit nervous about it. I showered and put on full make up this morning, then carefully coordinated my scarf with my outfit. I felt dressed when I left the house, but I wasn’t sure what it would be like to walk through the parking lot and into the medical building without hair. But it was okay…no one stared or gasped or cried or anything like that when they saw me. And I was in the parking lot of a cancer center, so it’s not like the sight of a woman in a scarf was really all that unusual.

The nurse I saw today was one that I haven’t met before (or at least I don’t remember meeting her before). She greeted me by telling me that I looked beautiful, which was just what I needed to hear. “Beautiful” is not what I think when I look in the mirror right now. I think she sensed that the lack of hair was new for me and she told me immediately that the nurses often discuss the fact that there are some women who can “do bald” and that she thought I was one of those women. That made me feel so good, and I was immensely grateful to her for making my maiden voyage into public so much easier.

After I got home, I still felt pretty good so I took Karly to Material Pickup Day at the high school to get her books and locker assignment. I was nervous about going someplace where there would be people I know who might not know what was going on. I was also nervous for Karly and worried that she would feel like people were staring at me--and at her--while we were there. She surprised me by scoffing at my concerns and telling me that she didn’t care at all if people looked, and that she didn’t think they would, anyway. And she was absolutely right. People didn’t care. I saw people I knew who may or may not have known what I was going through, and each one greeted me just as they would have if I had hair on my head.

I’m relieved to have those initial public excursions out of the way and to know that I am going to be able to handle this whole bald thing. And here is your first view of my new look. I don’t have a picture of my bare head yet, but I’ll share it with you as soon as I do.
Kim and Blake 2.JPG


August 12, 2007

What Should You Say?

Shelley left a comment today after my hair post with a really great question. It’s something I’ve been talking and thinking a lot about lately, and I think the subject deserves its own post. Here is Shelley’s comment, in case you didn’t see it:

Kim, thanks for posting candidly on something that has to be incredibly hard to deal with. If you'd rather not answer this, I'd understand, but I am curious as someone who wouldn't know what to say: how would you like people to react when they see you sans-coiffure? Would you want them to act as if nothing has happened, or to offer sympathy?

My gut reaction would be to ask how you're feeling and let you talk about it or not, but would that come across as pity?

The answer to the last question, which is the easiest to answer, is that your gut reaction would be exactly right on and would be my gut reaction as well in the same situation. If I run into you on the football field sidelines, in the office at school or in the grocery store, I would hope that you would feel very comfortable asking me anything you want to know. In that situation, it would definitely not come across as pity. I am assuming, for the sake of that answer, that we know one another.

I made the decision at the very beginning of all of this to be open with people and to talk about what I am going through. (Thus a website for all the world to read!) For me, that was the best decision because it has made it so much easier for me. Breast cancer has been such an all-consuming part of my life since April and I can’t imagine trying to keep it quiet or secret. The people I run into on a daily basis are usually, via this blog, up to date on what is going on with me and that allows us to jump right into a conversation without having to waste time “catching up.” This will probably change once I get back to school, but so far there have only been a couple of occasions when I ran into someone I know who didn’t know.

But I’ve been on the other side of the fence, and I know it’s not easy to know what to say.

Last year the mother of one of Matthew’s friends went through breast cancer. I didn’t know her very well…our relationship was mostly based on talking on the phone and in one another’s foyers about pick up times and future play dates for the boys. I remember very clearly the day she answered the door with a scarf on her head when I dropped Matthew off at her house one afternoon. It was immediately evident that she was bald and I assumed that she was going through cancer treatments. My reaction was to ignore the scarf completely and to not address the obvious situation at all. I never asked her about it or said anything to her. Because I didn’t know her very well, I had no way to know how she would react to any questions I might ask and I didn’t really even know what to say since I had never known anyone with cancer before except for my cousin, Jenny. Knowing what I know now, I would react very differently in the same situation.

Matthew was invited to his friend’s house again just last week and when we arrived I asked his friend’s mother about her cancer. I apologized for not having said something last year, told her about my diagnosis and we had a wonderful conversation about our experiences.

Even though I am open about this and don’t mind talking about it, I know that there are people who definitely do not feel that way. The day I was diagnosed with breast cancer I unexpectedly ran into an old friend at the surgeon’s office. I saw her within minutes of my receipt of the official diagnosis and was still in shock at hearing the news. My friend was at the doctor’s office with her mother, who, as it turns out, is a breast cancer survivor. When she told her mother about my diagnosis, her mother became visibly upset and walked to another part of the waiting room. My friend told me that it was because her mother doesn’t like to talk about it. And indeed, everyone handles their cancer experience differently. It is impossible to know whether the person you are talking with is someone who is open about it or who prefers to keep it to him or herself and that makes it difficult to know exactly how to respond in any given situation.

And what about strangers? Shelley asks, “[H]ow would you like people to react when they see you sans-coiffure? Would you want them to act as if nothing has happened, or to offer sympathy?” I think that this can be a difficult situation because if two people don’t know one another they have no way to know how the other person is going to react. From my point of view, as I mentioned in my last post, it will be very difficult for me to face the pity or fear that I will inevitably encounter in the faces of strangers. I would prefer that they ask me about it rather than just feel sorry for me, but I know that is unrealistic and that most strangers are going to be reluctant to say anything.

Right after my diagnosis I was grocery shopping one morning when I passed a woman and her daughter in the aisle. The woman was wearing a pink scarf on her head and was obviously bald and going through cancer treatments. My reaction to her, when my emotions were still raw from my recent diagnosis, was immediate and visceral. It was all I could do not to sob at the vision of her scarf and what it covered. I looked at her as we passed one another, wanting to connect with her somehow even though she would have had no idea what we were connecting about if she had looked at me. And I don’t know what she would have seen in my face if she had looked at me at that moment, but I suspect it would have been a mixture of fear and sadness, exactly the thing I dread seeing in a stranger’s face.

So how would I answer Shelley’s questions? Well, I hope that if you see me somewhere and you want to say something or ask me something about the scarf on my head or my lack of hair, that you will, whether we know one another or not. I will be receptive and happy to talk to you about it. And I would hope that you wouldn’t feel sorry for me or feel pity for me, because there is nothing to be sorry for. This is the experience I have been given to handle, and handle it I will. I am okay and I am fighting this. The scarf and the bald head are symbols of my fight…battle scars even. But they are temporary and they are manageable and for now, they are me.

Hair Today, Gone Tomorrow

That title makes me think of an old Bugs Bunny episode, which of course would actually have been entitled “Hare Today, Gone Tomorrow.” Bugs Bunny aside, it is the right title for today’s post. My hair is gone.

And that is the worst side-effect of the day. Maybe the universe is giving me a break this time so that I can deal with the hair loss instead of the other stuff.

I feel relatively good today. I still have very minor bone discomfort, no appetite, and I’m still tired, but other than that today is much, much better than the Sunday after my first treatment.

When I got out of the shower this morning and tried to comb my hair, however, it mostly just came out in the comb. I decided that it was harder to watch it fall out bit by bit all around me than to just get rid of it, so I called Suzy. She came over and shaved my head, and that was that. The initial cuts were difficult, but now that it’s done it’s really not so bad. I’d rather have the hair I had last May, of course, but this is okay. But surprisingly cold! I never realized that my house was so drafty.

It’s a relief to have it over with, although I’m not really as prepared with head covers as I thought I was. I can’t quite figure out what the most comfortable look for me is yet…I’ve tried a wig, a baseball cap, a knit cap and a scarf, and am sticking with the scarf so far. My scalp is pretty tender right now so not everything feels comfortable on my head.

Family member reactions so far go something like this: Randy said that he thinks it looks good and that I have nicely shaped head. Matthew was very concerned about how I was going to look when I told him Suzy was going to shave my head, but he seemed relieved when he saw me and said I still just look like myself. Blake said I look different and wondered when I would have my own hair back again. (Karly is at work and hasn’t yet seen the new do…or lack of one.)

I think that the most difficult part of the hair loss is that it is such a visible sign of what I am going through. With hair, the librarian, the Starbucks barista, and the grocery bagger have no idea that I have breast cancer. The bald head makes it immediately and dramatically apparent that something is going on. I have been worried about the reactions of strangers to my lack of hair…I don’t want to see pity or fear on their faces, even though I’m sure that I will. But now that it’s gone I find that the trepidation I was feeling about those reactions has faded quite a bit.

I’m not quite ready to post a picture yet, but I will let you know when I do.

August 11, 2007

So Far, So Good

It’s Saturday afternoon and I don’t have too much to report, which is good. Compared to the first treatment, this has been much easier so far.

The main problem for me today has been a deep exhaustion that I can’t seem to combat. Part of that is caused by the fact that I woke up at 2:00 a.m. this morning (thanks to the steroids) and never went back to sleep. I finally got up at 3:30 a.m. and did some things around the house (very quietly). I tried to sleep again at about 5:30 a.m. but had no luck so I got up, had something to eat, and then I even did some yoga. I keep trying to take naps but I can’t seem to get into a really good deep sleep.

I’ve had no nausea today (which I am very thankful for), but I have no appetite and am trying to force myself to eat periodically to keep up my strength. I have very slight bone pain, but I’m not even taking anything for it because it’s hardly pain…just discomfort really.

And I’m still losing hair. It’s falling out everywhere now. Suzy’s on call and ready to come over and shave my head any time, but I’m not ready yet.

August 10, 2007

Friday Update

Just a brief update to let you know that I’m doing okay so far today.

I had a Neulasta injection today, which was not without a little drama. I called the oncologist’s office on a hunch this morning and discovered that our new insurance company (as of 8/1…yes, I’m going through cancer treatment and had to switch insurance companies, and it is just as pleasant an experience as you might imagine that it would be) won’t pay for a Neulasta injection in the doctor’s office. If I had not made the call, incidentally, we would never have figured that out before the injection. This is the $6000.00 injection, by the way. This meant that I had to go to a different hospital, register there, answer a million questions, and then get the shot. Although it was an administrative pain, the nurses at the hospital were really wonderful and informative. They suggested that I might not need Neulasta injections after the Taxol treatments, which means I would only need two more. That would be good news! I have to talk to the oncologist about that, though, because they told me that I would need Neulasta following the Taxol, so we’ll see.

Other than that, I feel relatively good. Just very tired. And today my hair is starting to come out in small handfuls. It’s a bit startling to see such large amounts in the sink every time I wash my hands and really freaks me out more than I would have expected.

I haven’t called Suzy yet to ask her to shave it off. I am so not mentally prepared for that. I think I’m going to wait until it’s really falling out all over the place because even though I’ve been trying to gear myself up for this, I know that it’s going to be traumatic for me. I don't know when that will be, but I do know that the progression of the amount of hair loss has been rapid between yesterday and today so I kind of think it might be this weekend. I'll keep you posted, although I can't promise any pictures right away!

August 09, 2007

Round 2

Today’s treatment was painless and seemed to go faster than the first one. The scariest moment always seems to be when Patty accesses my port, and that’s nothing. She’s good, so there’s absolutely no pain or discomfort involved in that.

Like the first time, I experienced the unusual Cytoxan side-effect of a kind of stuffy burning in my sinuses as I was receiving it. I also felt it in my head (next to my scalp) and in my ears and throat. It’s uncomfortable, but not painful or horrible. And like the first time, I now feel very tired and I have just a hint of that same anti-nausea induced headache that I had before. I’m trying to stay ahead of it with Tylenol this time. We’ll see what happens as the days progress. Hopefully I learned my lesson last time and I can let go of expectations and just take each day as it comes.

This time there were five other women in the room at the same time I was there. Patty introduced me to two of them right away, and I had a wonderful conversation with them. They are both in their early 50s and gave me all kinds of advice about hair and chemo treatments and side-effects. (Patty told me that Thursdays seem to be “breast cancer days” in the office, so most of the patients are breast cancer patients and are women.)

In talking to my fellow chemo-mates, I was struck by the fact that every cancer patient has a story. The only thing we all have in common, really, is that we have cancer. And sometimes we meet someone else who may have a similar diagnosis or who may have gone through a similar treatment, but even then the story we each tell is as complex, interesting, and unique as each of us. These stories are important and no matter how many I hear, every time I hear a new one I am awed at the power and depth of the human mind and body to fight and to overcome.

The first women I met today were J and M. (I forgot to ask their permission to post their names, so until I do that I’ll just use their initials.) They were talking with each other when I first arrived and it was obvious that they know each other pretty well. As it turns out, they are at close to the same place in their treatments (near the end for both), so they’ve made the journey together and have gotten to know one another throughout. After Patty introduced us they both jumped right in and started asking me questions and telling me their stories. I didn’t take my computer this time, but I felt a little like Harriet the Spy as I jotted notes about our conversations in my notebook so I could remember what I wanted to tell you.

The moment I heard J talking to M, I knew I liked her. You could tell just from listening to hear that she is a dynamic, positive, no-nonsense kind of woman. She looks at this whole thing as a pain in the ass, but takes the viewpoint that it is what it is and that she’ll just get through it. She’s tough and gritty and doesn’t take no for an answer. She wore a red bandana jauntily on her head with funky earrings peeking out from underneath next to wisps of gray-white hair. She had her footrest up and she wore black flip-flops with a little bling on the straps. She is 53 years old, and told me that she discovered a lump in her breast one morning in the shower by accident. She immediately called her doctor, had a mammogram, and one week later was having surgery. I am just realizing now that I neglected to ask her some very important questions, like what kind of cancer she had and whether she had a lumpectomy or a mastectomy. (I suspect lumpectomy, but I don’t know for sure.) J talked about how upset her 23 year old daughter was when she found out her mom had cancer. J’s mom also had breast cancer at 53, but following a mastectomy with no chemo or radiation she survived and lived to be 78 years old before she passed away from unrelated causes. J also told me that she (J) had genetic testing done after she was diagnosed and that it was negative, despite the fact that several of her mom’s sisters also had breast cancer.

At one point J mentioned that her hair was coming in gray even though it was not gray before chemo. I asked her what her hair used to look like and she pulled out a picture to pass around the room to show us. When I saw it, I couldn’t help catching my breath. Her hair was long, luxurious and curly and a stunning shade of golden red. I thought that it matched her electric personality perfectly. She said that she was going to miss it, but I think she’s going to look equally as striking with gray hair. She’s going to be one of those women who can just pull that off with style. J said that when her hair started falling out she poured herself a martini and had her brother-in-law shave it off for her.

M is also in her early 50s and is energetic and positive and chatty. She talked about the trauma of having her hair fall out all over her body in the shower one day, and about what a relief it was to have her hairdresser shave it off later that day. She told me that she purchased two wigs before she lost her hair and that she loves them because they are so much better than her regular hair. She said that now she has the hair she has always wanted. Her words of wisdom were to make sure I either take my wig off when I cook or have someone else cook…she singed one of hers over a hot grill. M noticed a lump in her breast shortly after she had had a mammogram…which did not show the lump. She said that the mammogram images were just centimeters too low and didn’t catch it where it was located on the top of her breast. She had her doctor check it out, and an additional mammogram showed the lump and then she found out that it was cancer.

While we were talking, another woman came in and sat in one of the chairs near us. J, M, and K all knew one another. K is about 60 or so, and she told us that she was first diagnosed with breast cancer in 1992 in her right breast. At that time, she had a mastectomy followed by a breast implant. She went through chemo and radiation and then she received a clean bill of health and a positive prognosis 5 years later. She and her doctors thought she was home free, and then she got breast cancer in her left breast. She had another mastectomy, but chose not to have reconstructive surgery or an implant on that side. In her words, she said that she just decided she would be a unicorn for the rest of her life. Once again, she went through chemo and radiation and then was clear for 5 years. And then she got bone cancer, which is what she is being treated for now. She told me that she has been coming to this oncologist’s office for 10 years. Her first oncologist committed suicide. And her first surgeon died, which proved to be a big problem when her implant deflated recently. She is having a hard time getting any information about the implant (which is now 5 years outside of its 10 year warranty) to determine whether or not she needs to have it removed. As shocking as this story is, K told it exactly the way she would have told a story about running into an old friend at the grocery store. This is her story and her life—as far as she is concerned it’s not dramatic or horrible or depressing. It just is what it is.

After going through this three times, you are entitled to be impatient with the whole thing and K was definitely impatient. Every time someone’s IV machine beeped, K asked the nurses if she was done yet. After the nurses gently informed her three different times that she still had a little while longer to go, she turned to me and said that she didn’t know how the other girls can stand it….it makes her stir crazy to have to sit there. Then she popped a Tootsie Roll in her mouth, took a swig of her Diet Pepsi, and opened her book back up again while she waited impatiently for her own beep.

As we all settled in with our books and the various cocktails coursing through our IVs, yet another woman joined us in the room. She was a tiny little woman, about 70 years old (I am guessing on some of these ages, and I may be way off!), who could not have weighed 100 pounds, wearing a pixie-style shiny white wig and a bright green sweater. She used a walker to get to her chair, but then hopped right up and gracefully pointed her toes like a ballerina in her white Keds as the nurse adjusted the footrest for her. She knew all the nurses by name, and cheerily chatted with them as she told them about how excited she was to have a lunch date with her three children after her appointment. While everyone else read, she gazed out the window with a Mona Lisa smile on her face, watching the sky (because that’s all she could have seen from her angle) and dreaming about lunch with her kids. I didn’t get a chance to talk with her because she was too far away, but I would love to know her story.

I am so happy to have the opportunity to get to know these women. To talk to them you would think that this is all some kind of fun adventure. Their positive attitude is refreshing and uplifting.

In other news, apparently I am an overachiever in the hair department. Patty, J, and M all remarked on what seems to be an amazing feat—I still have all my hair and it looks good. Today is the 15th day after my first treatment, and I guess I’m supposed to be well on my way to losing it by now. However, don’t get too excited. I noticed quite a collection of stray hairs in the sink and on the bathroom counter as I got ready this morning. I can’t pull out chunks yet, but when I run my fingers through my hair (which I find myself doing obsessively now, just to check) my hand inevitably comes away with a piece here and there. We’ll see how long my overachiever status lasts.

My good friend Rachel drove me to and from my appointment today, even though I tried to dissuade her. I knew that they wouldn’t let her join me in the treatment room because of space limitations and I hated to think of her sitting out in the waiting room for 2-3 hours. She insisted that she didn’t mind waiting, though, and I was happy to have the company on the trip there and back. When we got into the car to go home, one of the first things she did was to comment on the hard rock music playing in the waiting room. The funny thing about that is that she had not read my last post and I hadn’t told her the story about the Beastie Boys and Pink Floyd. She came to the same conclusion as I did…that someone on the office staff is into rock music. Rachel told me that she looked around the waiting room as she listened to the soothing sounds of Van Halen and wondered just how much the senior patients sitting there were hating the music selection.

August 07, 2007

You Gotta Fight For Your Right To Party

Today I saw one of the nurse practitioners at my oncologist’s office for a check up to determine how my body handled the first round of chemo and whether I am ready for the next round on Thursday. The good news is that I am doing well and am ready to go again. Yay.

More good news is that Nicole, the fabulous nurse practitioner, was able to explain last Tuesday’s unexpected and unwelcome relapse. She thought that it was probably because my body crashed as a result of anti-nausea med and steroid withdrawal. I had been so hyped up on all of those drugs from Thursday and then throughout the weekend that my body decided it really liked all that stuff and then punished me on Tuesday for taking it away. She also said that I probably overdid it on Monday when I was feeling better and that the combination of that and the drug withdrawal threw me for a loop. This time I’m going to take a different anti-nausea medicine on Monday and Tuesday (Zofran) to try to prevent the crash I experienced last time. If that doesn’t work, Nicole suggested that I might have to try taking a lower dose steroid on Monday and Tuesday to get me over that post-drug period. At least I get to add another new experience to my roster—drug withdrawal. Just what I always wanted to try. But really I'm happy to know that there is possibly some relief in sight and that I might not have to go through what I went through last Tuesday again.

I found myself silently laughing as I sat in the waiting room today because I was thinking about what I was going to write about today’s visit. I find that I spend a lot of time these days thinking about how I’m going to describe certain feelings or observations about all of this in my next blog post, and today was no exception.

The doctor’s staff seemed to be running a bit behind this morning, so I sat in the waiting room for about 20 minutes before my appointment. One possible explanation for the delay might be that the office was hopping today. The waiting room seats approximately 14 people, and there were 11-12 there at any given time while I was there. Just as one patient would be called back to see a nurse or to get treatment, another one would walk in the door. I was the youngest patient in the waiting room by at least 10 years. There was one girl who was about 17 years old sitting there, but I think she was probably a daughter waiting for one of her parents to finish treatment.

Everyone sat there intently reading their books and magazines and trying not to make eye contact with anyone else. I’ve noticed that strangers don’t interact very often in this particular waiting room. I noted three different women who were quite obviously wearing wigs, which made me wonder once again if I will ever wear mine. The hair just didn’t look real...the texture and shine were not natural looking and the hairlines were certainly a little “off.” I can't help wondering if I would have noticed that these women were wearing wigs if I wasn’t sitting in an oncologist’s waiting room. It’s far from unexpected to see a wig in such a place, so maybe it was only obvious that these were wigs because I was looking for them.

At one of my previous visits, I came to the conclusion that someone on the office staff must like rock music based on the fact that the music being piped over the waiting room music system was several cuts from Pink Floyd’s Dark Side of the Moon album--and it wasn't the Muzak version. Not exactly your typical medical office music selection. My guess was backed up by one of today's background music songs: the Beastie Boys singing “Fight For Your Right.” I might have been the only person in the room who actually could have sung along. But maybe that song isn’t as incongruous in an oncologist’s waiting room as it seems at first glance. After all, it could be considered a cancer treatment anthem. By putting ourselves through chemo, fighting for our right to party is exactly what we are doing.

August 05, 2007

Refreshed and Recharged

After a weekend spent at the Klein’s lake house in Lake Redstone, Wisconsin (thank you, Dick and Kathy!), I feel refreshed and recharged. Despite the cold, rainy weather and the lack of our usual outdoor lake activities, it was relaxing and, maybe more importantly, it was away from here. It was good to be somewhere that isn’t all about breast cancer.

And today I feel almost normal. I feel strong and good and healthy…I feel like Kim, which is something I haven't felt for awhile. I still get tired very quickly, but even that feels manageable. I hope every non-chemo week is like this. If I have this to look forward to, maybe the bad days won’t seem so bad. I even feel slightly less terrified about the next treatment than I did last week. At a minimum, today I feel like I will be able to put on my game face and meet Thursday’s injection with something that resembles courage.

One chemo side-effect that has lingered and probably will until the end is a lack of ability to taste. For a self-professed foodie, this is a highly disappointing outcome. My appetite returned this week so food looks and smells wonderful to me, but eating is unsatisfying and boring. It’s interesting how my mind refuses to accept the fact that I can’t taste anything and how it continues to crave food. I find that I sit down at a particular meal full of the pleasant anticipation of a variety of sweet and savory tastes, only to find that the only things I can really experience are textures, temperatures, and occasionally the sensation of a really strong flavor, such as the bitterness of chocolate or the heat of something very spicy. I’ll be keeping my fingers crossed that my ability to taste will return sometime around the holidays…just in time for all the treats of Thanksgiving and Christmas.

August 02, 2007

Inflammatory Breast Cancer

I have written before about the people that breast cancer has brought into my life, and today I want to tell you about two more.

One is a young mother of two very young children who was diagnosed with breast cancer within days of me. I discovered her blog through mutual readers and have marveled at how closely our paths mirror one another’s. I’m not sure that I ever would have found her blog if I hadn’t been diagnosed with breast cancer. And I know I would not have known about IBC.

WhyMommy was diagnosed with the most deadly kind of breast cancer, called inflammatory breast cancer, or IBC. She was nursing her second baby when she came down with what the doctors diagnosed as mastitis, or a breast infection relatively common to nursing women. But it wasn’t mastitis at all, and thanks to her insistence that something was just not right she caught it and is being treated.

Another person you should know is Stella. I’m not certain anymore how we discovered one another’s blogs, but she has been incredibly supportive of me recently. She has taken the time to tell me about her chemotherapy experience and to offer words of encouragement and wisdom as I have struggled this week. I knew that Stella was a young mother and a breast cancer survivor, but I was astounded to learn just yesterday that Stella, like WhyMommy, also had IBC. She was also diagnosed with a breast infection which turned out to be cancer.

I think that it is important for all of us to know that breast cancer is not always simply an unexplained lump in the breast and that there are many different kinds of breast cancer. I have written before about the importance of self-exams and mammograms, but I think perhaps breast awareness is the most important idea of all. IBC doesn’t present itself as a lump and doesn’t show up on a mammogram, so awareness is by far the best prevention.

WhyMommy recently posted about IBC on her blog. With her permission, I am copying her post here so that you can read her words for yourself.

We hear a lot about breast cancer these days. One in eight women will be diagnosed with breast cancer in their lifetimes, and there are millions living with it in the U.S. today alone. But did you know that there is more than one type of breast cancer?

I didn’t. I thought that breast cancer was all the same. I figured that if I did my monthly breast self-exams, and found no lump, I’d be fine.

Oops. It turns out that you don’t have to have a lump to have breast cancer. Six weeks ago, I went to my OB/GYN because my breast felt funny. It was red, hot, inflamed, and the skin looked…funny. But there was no lump, so I wasn’t worried. I should have been. After a round of antibiotics didn’t clear up the inflammation, my doctor sent me to a breast specialist and did a skin punch biopsy. That test showed that I have inflammatory breast cancer, a very aggressive cancer that can be deadly.

Inflammatory breast cancer is often misdiagnosed as mastitis because many doctors have never seen it before and consider it rare. “Rare” or not, there are over 100,000 women in the U.S. with this cancer right now; only half will survive five years. Please call your OB/GYN if you experience several of the following symptoms in your breast, or any unusual changes: redness, rapid increase in size of one breast, persistent itching of breast or nipple, thickening of breast tissue, stabbing pain, soreness, swelling under the arm, dimpling or ridging (for example, when you take your bra off, the bra marks stay – for a while), flattening or retracting of the nipple, or a texture that looks or feels like an orange (called peau d’orange). Ask if your GYN is familiar with inflammatory breast cancer, and tell her that you’re concerned and want to come in to rule it out.

There is more than one kind of breast cancer. Inflammatory breast cancer is the most aggressive form of breast cancer out there, and early detection is critical. It’s not usually detected by mammogram. It does not usually present with a lump. It may be overlooked with all of the changes that our breasts undergo during the years when we’re pregnant and/or nursing our little ones. It’s important not to miss this one.

Inflammatory breast cancer is detected by women and their doctors who notice a change in one of their breasts. If you notice a change, call your doctor today. Tell her about it. Tell her that you have a friend with this disease, and it’s trying to kill her. Now you know what I wish I had known before six weeks ago.

You don’t have to have a lump to have breast cancer.

Dracula's Lament

Today Matthew told me about a cartoon in an issue of Nick Magazine that depicted two vampires. One of them looked really dejected and when his fellow vampire asked him what was wrong, the sad one told him that he failed his blood test. This was definitely an appropriate cartoon for Matthew to read today--I also failed my blood test this morning.

During one of my first visits to the oncologist’s office they ran lab tests on my blood to get a baseline reading of my white and red blood cell counts, among other things. They gave me a copy of the lab report at the time so that I could use it later to compare future lab test results. The report that I received today looks dramatically different from the report I received back before chemo began and certainly explains how awful I’ve been feeling for the past few days.

The normal range for white blood cell counts is between 3.6 - 10.0 units. (I’m not going to get all technical and actually write down the unit of measure here…you’ll be able to tell from the numbers how low the count is.) In June my white blood cell count was 8.4—right in the middle of the range. My lymphocytes (one of the white blood cells they track) were at 24.4 out of a normal range of 29.5 – 51.1, so they were marked as LOW on the report. My granulocytes, another white blood cell they track, were 5.8 out of a normal range of 1.4 – 5.5. I seem to recall that I thought I might be fighting off a cold on the day that was done, which explains the high granulocyte count and low lymphocyte count. They are both infection fighters, and their levels were off because they were busy protecting me from the cold (which I never got). Today my white blood cell count was at 0.9 (again, the reference range is 3.6 – 10.0). My lymphocyte and granulocyte counts? Both at 0. (Reference range is 29.5 -51.1 for lymphocytes and 1.4 – 5.5 for granulocytes.)

What this all means is that despite the Neulasta shot my blood cell counts are not recovering from the chemo treatment. It explains why I am feeling so tired and it means that I have absolutely no defense against illness right now. The nurse scared me sufficiently about illness today that I ran (okay, I didn’t really run…I walked very slowly) to Target to buy Chlorox wipes and Purell. I have banned poor Blake from being anywhere near me (he has a cold) and I have been washing my hands constantly. I’m a germophobe anyway…this just plays right into all my OCD germ behavior.

The nurse did tell me that I am probably at my nadir, or lowest point, and that they expect the counts to climb again before next week’s treatment. If they don’t, however, I think the treatment might have to be delayed. (I’m not positive about that, but seem to remember the doctor or nurse telling me that.)

While I was at the doctor’s office today I spent about 15 minutes talking with another breast cancer fighter whose treatment schedule is exactly one week ahead of mine. I met her briefly at my first appointment last week and was happy to see that today, the day of her second round of AC, she looked great and seemed to be feeling pretty good. We compared side-effects for awhile, and it was wonderful to talk with someone else who experienced so many of the same things that I did in the past week. She gets kudos from me for her grit, however; the Saturday after her first treatment she attended a family wedding. I couldn’t even get up off the couch on Saturday. She did tell me that she thinks she paid for it over the next three days, but I am still duly impressed that she even attempted it.


August 01, 2007

Another Tunnel, Another Light

Today is much better. I am still staggeringly tired and I can only do one thing at a time before I have to rest. But one thing is so much better than no things.

I am closer to feeling like “myself” than I was yesterday. I am, however, avoiding all glimpses of the calendar because when I see the next treatment listed there I start thinking about how quickly I can find my passport and pack and catch the next plane to Bora Bora or Tasmania or Mars or anywhere else in the universe that is far, far away from Adriamycin and Cytoxan and Neulasta.

Tomorrow—exactly one week after the first treatment—I will return to the doctor’s office for a blood test to track how my body is handling the chemo so far.

Thank you all for your thoughts and prayers and words of strength and encouragement.

I can feel you and it helps more than you will ever know.

July 31, 2007

Anger and Frustration

I am not feeling good today and I am angry and frustrated about it. Last night I felt pretty good. Not normal, but not bad. I went to bed expecting to wake up and feel good enough to exercise and to go about my day more normally than I have for the past several. But it didn’t work out that way at all. I woke up today feeling sick and tired, and it has lasted all day. I have no energy, no will, and no strength. I have spent the day trying to will myself to get up off the couch and move…to do something. But I keep falling back, exhausted and tired and angry. Angry at my body, angry at this cancer, angry that I have to go through this.

I didn’t expect this. I was certain that after the weekend I would feel better each day and I counted on my body to recover and to bounce back and to feel normal again by now. I keep picking up my cancer books or getting online to read about side-effects to find out whether or not this is normal, and I keep reading about how many people have few if any side-effects and about how many people go about their normal lives with no problem between treatments. I also keep reading suggestions about how exercise can help with the exhaustion. But I am too exhausted to think of attempting even a walk around the block, let alone real exercise.

I know that chemotherapy affects everyone differently and that there are no guarantees that your body will react one way or the other. But I am realizing now that I expected to be one of those people everyone keeps telling me about who just sails through it. I am not sailing so far, and I am not happy about it at all.

July 30, 2007

The Sun Also Rises

I feel better this morning, no question about it. The bone pain has subsided to just a mere ghost of discomfort and the nausea is gone. I still feel…not perfect. But at least I feel as if I’m fighting off a cold now, instead of the flu. And I’m so happy to be done taking drugs for a couple of weeks.

I am so tired of just sitting around, so this morning I did some laundry, picked up things around the house, made the bed, made some phone calls, etc., and now I’m ready for a nap. And it’s only 9:15 a.m. I know that I probably need to continue to take it easy as much as possible, but I have my fingers crossed that the worst of it is over. I have come to the conclusion that I am not a very patient patient. All this forced down-time makes me stir crazy, even when I don't have the strength to do anything about it.

Interestingly, I find that I’m already trying to steel myself up for the next treatment (which is still a week and a half away). I’m going to need to work to get myself psyched up and mentally prepared to go through it all again. I thought I might feel as if I could start to count down to the end once I got through this first one, but instead, when I look at the calendar and see all those treatments listed, it feels as if these next three months are going to be interminable.

July 29, 2007

Holding Pattern

Not much improvement to be reported this morning. The list of side-effects is about the same: unrelenting bone pain, slight nausea, no appetite, all-over general feeling of yuck. It can best be described as having a really bad hangover and a really bad flu all at the same time.

Cancer cells are strong and tenacious. It takes strong and tenacious medicine to kill them. I keep trying to think about the fact that if these drugs are making me feel this way, they must really be doing a number on any cancer cells that thought they were going to be hanging out in my body. Those thoughts don’t make the discomfort go away, but they do help to put it in perspective and make it a little easier to “just keep swimming.”

July 28, 2007

Post-Chemo: Day Three

Evening Update: Little did I know that this morning's manageable side-effects were going to be the high point of the day. It's been a very rough afternoon and evening...lots of pain in my hips, legs and back, some nausea, mostly just feeling really, really awful. I'm okay..soldiering through as best I can..but anxious for this part to be over. I hope it is just temporary, anyway.

So far the chemo side-effects have been very manageable. I'm knocking on wood that it continues. Today and tomorrow are supposed to be the rough days, so we'll see what happens.

Yesterday I received the Neulasta injection in the back of my arm. It hurts and it takes a good minute to administer it. I won't be looking forward to that one every two weeks.

Yesterday evening after dinner I was so exhausted that I absolutely could not keep my eyes open and I feel asleep on the couch for an hour or so. When I woke up we watched a movie and then went to bed, where I fell asleep as soon as my head hit the pillow. But then I woke up at about 4:30 a.m. this morning and have been up ever since. I'm not sure if it's the steroids or what, but when it became obvious that I was not going to be able to fall back to sleep, I got up and began working on my to-do list. I got several school and household business e-mails sent out, refilled my prescriptions online, ordered my books for next semester and made a shopping list for Randy.

My hips and legs are beginning to ache now, which is a side-effect of the Neulasta, so I'm going to take some Tylenol and hope that helps. I have felt slightly nauseous both yesterday and this morning, but the cheaper anti-nausea medication has been helping (as opposed to the $400-for-twelve-pills Zofran [and that's for the generic version!]). I have also experienced a significant loss of appetite...nothing really sounds or tastes very good...but I'm trying to find things to eat. The nausea, hip pain, and loss of appetite can best be compared to pregnancy side-effects so far. Been there, done that a few times and if this is as bad as it gets, I'm good with it. I'll update later if there are any changes.

Update: Because I'm also looking at this blog as a journal to record my experience, I want to be sure to note a couple of other side-effects I have experienced so far. Unfortunately, constipation has to be added to the list (caused by the anti-nausea meds, I'm told). That's a fun one, and one I'm thrilled to be sharing with everyone I know. I'm trying to work on it with diet and hopefully some physcial movement soon, but I may have to resort to pharmaceutical help. TMI, I know! Also, I should note that I experienced a pretty bad headache the evening after my treatment which turns out to be an uncommon side-effect of the anti-nausea meds I received during the chemo treatment. Patty (my nurse) told me yesterday during my injection that it was the cause, and that not everyone experiences that. So I'm 2 for 2 with the unusual side-effects so far. Let's hope the record stays right there. I don't like the unusual ones.

July 27, 2007

You Are the Best Part

For the past couple of months, I have been trying so hard to stay on top of my correspondence with all of you. I am woefully behind at this point, and will probably never catch up. Most of you know enough about me to know how much that drives me crazy. I want so desperately to be able to respond to each comment and e-mail, write thank you notes for your gifts, and return your phone calls and I just can’t keep up. And I am afraid it’s going to get even more difficult as chemo gets under way. I hate to have to send a generic thank you like this, but I want you all to know how much I appreciate everything that you all are doing for me and my family.

I don’t think I can even find the words to begin to express the depths of my gratitude to all of you, from my IRL (translation for those of you not hip to the techno-lingo: In Real Life) friends and family to my internet friends to the complete strangers who have visited this site. Your cards, gifts, letters, dinners, blog comments, e-mails, help with the kids and phone calls have been amazing and mean so much to me. Every single day I am overwhelmed by your love and support, and I read your words and listen to your messages several times. In the darkest moments (and there are some dark ones), and even in the not so dark ones, knowing that you are all out there truly gets me through.

I read The Diary of Anne Frank for the first time when I was in sixth grade in Miss Ellenwood’s class at Aboite Elementary School. I believe that was the first time that I had ever heard of Anne Frank, and I remember being incredibly moved by her words and by her story. I became fascinated with the Holocaust and I was horrified (and still am) by the atrocities that took place during that time. Knowing everything that Anne Frank and her family went through before and while they were in hiding and knowing that they were well aware of the horror of what was going on in Europe at that time makes the last words of her diary even more poignant. “[I]n spite of everything, I still believe that people are really good at heart.” Those words struck me immediately when I read them at 12 years old and I never forgot them because I have always felt the same way. Your powerful and unrelenting support for me since the moment I announced my diagnosis has proven to me over and over again how true those words are. People are more than really good at heart; people are quite amazing. Their generosity and kindness and love for their fellow human know no bounds.

No one wants to go through anything like this (and believe me, now I know that you REALLY don’t want to go through anything like this), but I hope that anyone who finds themselves on a similar path discovers the wealth and the joy in the love of their friends and family that I have found. I think I am actually one of the lucky ones, because I get to see and feel the outpouring first hand.

There are many bad parts of cancer. All of you, however, are the best part.

Thank you.

July 26, 2007

Let the Countdown Begin

When I said I had a date with nurses and needles in my last post, I wasn’t too far off the mark.

I’m writing this post while sitting in my spring-green vinyl recliner in the chemo room at my doctor’s office while hooked up to an IV pole full of drugs. There’s a basket sitting next to me full of the drugs still to come. My roommates are a woman who is about ten years older than me with a full head of long blond hair and an elderly woman with dainty, bird-like features and pink cheeks wearing a bright pink baseball cap, a lavender sweat suit and no hair. My third companion is another woman who is about fifteen or twenty years older than me wearing a red blouse, glasses and a light brown wig. (I can’t see her very well because she’s around a corner across the room, but I think it might be her last treatment.) The room is L-shaped, with the tall part of the L approximately 10’ wide x 20’ long and the short part of the L about 10’ wide x 15’ long. Every available bit of space in the room is filled with recliners just like mine, eight or nine in all, each accompanied by a small white bedside table and several IV poles and pumps.

The previous paragraph is as far as I got in my Chemo: Day One narrative, because I spent the rest of the appointment talking with my amazing nurse, Patty. Patty greeted Randy and I when we arrived, accessed my port, and was in charge of the administration of all those drugs while I was there. (The room was so small and crowded that I urged Randy to leave once I was hooked up and to return when I was finished, and he did.)

Most of the chemo drugs are administered via an IV bag, but the Adriamycin is administered by the nurses themselves using a very large syringe. It takes 8-10 minutes for them to pump it into us through an IV line, so they sit next to us on a stool while they do it. Patty sat next to me while she was administering the Adriamycin, and then stayed while the Cytoxan was administered as well. I was happy about that because we had a great conversation and I thoroughly enjoyed talking to her. We discussed everything from our kids (she has four) and their driving to wigs and Wisconsin and blogs. (I told her I was going to write about her here and gave her the address so she could check it out.) Talking with her made the time fly and I found that I was actually disappointed when it was time to go. (I will take my camera next time to get pictures of Patty and of the chemo room so you can see what it looks like.)

Just as WhyMommy observed last week at her first chemo appointment, when I first arrived I felt like the new girl at school. I didn’t really know anyone there, I didn’t know where to sit or what to expect, and it was all a little intimidating. The nurses and the other patients were all kind and friendly, however, and thanks to them I quickly felt at ease.

After Patty accessed my port (which was completely painless), she gave me saline, an anti-nausea med and a steroid, followed by the bright red Adriamycin (it looks just like cherry Kool-Aid) and the Cytoxan. She described everything she was doing before she did it and reviewed all the possible side-effects of each medicine. The whole process was quite painless and relatively easy.

Lucky me, I did have one side-effect while I was receiving the Cytoxan that she had forgotten to mention. At first when my sinuses began to feel clogged and to burn a little bit, I thought maybe it was my imagination. It kept getting worse, and in addition it felt like water was coming out of my ears (kind of like after you go swimming). I finally mentioned it to Patty and she told me that only one in ten women experience that particular side-effect and that it only lasts while they are receiving the Cytoxan. I hope that doesn’t mean that I’ll be experiencing other rare side-effects. I don’t want to be that special!

I’m home now, drinking lots of water (to flush the Cytoxan out of my system in order to fend off potential bladder damage) and resting. I’m actually feeling okay right now, although I’m a little tired. I think that’s just from being hyped up about all of this more than anything else. Patty said that I will probably experience insomnia tonight (an effect of the steroid) and that I will still feel pretty good tomorrow. Saturday and Sunday will be the days when I might feel really exhausted and possibly nauseous. I’ve got my fingers crossed that these anti-nausea medications do their job.

Tomorrow I have to return to the doctor’s office for a Neulasta injection. This injection will help my bone marrow and white blood cells recover so that my body will be ready for the next treatment in a couple of weeks.

The good news is that the first treatment is over. I’m no longer nervous about that part of it. The big unknown now is which side-effects I will experience, but that mystery will probably be cleared up in short order.

July 24, 2007

Anticipation

This week feels like the worst finals period ever in the history of law school. And it’s not because of the law school final which takes place tomorrow night. Granted, I’m probably less prepared for this one than for any other law school final that I’ve ever taken and that’s causing me some anxiety. But I will be spending all day today and most of the morning tomorrow studying—cramming—to get ready for the test. Even though I’m less prepared, I’m also less nervous about this one. There’s something about cancer and chemotherapy that takes all the scariness out of law school exams. It no longer seems like the test is a matter of life and death. The “exam” I’m most nervous about is the one that’s taking place on Thursday.

The anticipation I feel about Thursday’s first chemo treatment kind of feels like the anticipation of a law school final, but one for which I am completely unprepared and for which there is no way to prepare. There’s no study guide, no practice exams, no lecture notes, and no commercial outline to help me get ready. I’m just on my own for this one. Like a law school final, it will last for three hours and I won’t be able to get up and leave or move around if I want to. Also like a final, I don’t know exactly what to expect or what is going to be included on the exam. Instead of having to wait four weeks to get a grade, however, I’ll only have to wait a day or so to get possible side-effects.

I think I should probably be happy for the intense exam prep that I’m working on this week, because it prevents me from being able to focus too much on the upcoming chemo treatment. I would be a basket case if I was thinking solely about Thursday with nothing to distract me. So it’s back to hearsay exceptions and prior inconsistent statements for the next 36 hours or so, then on to my date with nurses and needles on Thursday.

July 19, 2007

On Chemotherapy and Wigs

I met with the radiation oncologist today for a radiation follow-up visit and to talk about the chemo start date. We have decided that next Thursday, July 26th will stand as the official chemotherapy start date unless my skin reaction to the radiation worsens. So far it still looks and feels like a bad sunburn, but it’s not terrible. If it does get any worse in the next couple of days I will postpone the start date in order to make sure that I’m on the up side of healing and to prevent any further complications. The Adriamycin (one of the drugs I’ll receive during the first four treatments) in particular can retard the healing process, so we have to make sure that I am well on my way to being healed before we start.

After that appointment, I jumped in the car with my friends Kim and Suzy (both are neighbors…Suzy is my hairdresser extraordinaire) and headed to a local wig shop. Although I was looking forward to hanging out with them, I was NOT looking forward to wig shopping. I couldn’t wrap my mind around the idea of wearing a wig…ever…no matter how much I hated being bald.

And wouldn’t you know, I left the shop carrying a receipt for not one…not two…but three wigs. Suzy and Kim and the incredible staff at the store helped me choose a blond wig that is very similar to my normal hair style and actually looks real, a partial fall that I can wear under hats when it’s hot, and a completely unexpected and kind of cool dark brown wig to boot. (For those of you who know her, with brown hair I look eerily like my sister Molly.)

Is it Kim or Molly.JPG
Exhibit A--Is it Kim or is it Molly? (For the record, I did NOT buy this wig! Can you say "1980s?" All I need is shoulder pads and I'd be set.)

The best part was how much fun we all had trying on wigs. Kim and Suzy tried on just as many as I did, and I think we tested every single hair color and style in the store between the three of us. We tried on gray, red, brown, pink, black, all shades of blonde, long, short, medium, braided, curly and straight hair. We laughed constantly and it turned into a fun excursion rather than a painful one. I was truly amazed at how real the wigs looked and even felt. I still can’t imagine wearing one, but I’ll have several to choose from if I want them.

I still don’t have any pictures of my new super-short haircut, but in the meantime click below to see a few pictures from the Great Wig-Buying Adventure. (I know that the pictures below are cut off...I don't have time to fix it right now, so just click on the photo album link over on the right to see the full pictures for now!)


Continue reading "On Chemotherapy and Wigs" »

July 16, 2007

Time to Celebrate!

Battery of tests? Check!
Surgery? Check!
Radiation? Check!

Radiation is over and I am celebrating with a glass of champagne this evening. (The nurse told me I could only have a little bit. The doctor said I could go for it, as long as I was sitting down. Guess whose advice I’m taking?)

My last treatment went quickly and once I was done the nurse practitioner removed the catheter. She had given me a topical anesthetic in the morning and told me to apply it to the skin around the catheter and to take some Vicodin before I left the house on my way to the afternoon treatment. These suggestions were supposed to help with the pain of the removal. Since “removal” consisted of pulling the entire length of the catheter and balloon out a 1/4 inch hole in the bottom of my breast, I kind of think that general anesthesia would have been more effective.

In reality, it sounds much worse than it actually was. It was mildly uncomfortable, but the only time it really hurt was when the catheter and balloon passed through the hole near the surface of my skin and that only lasted for a few seconds. Then it was over. The nurse closed up the little incision with couple of steri-strips and I was on my way out the door. As I left the office, many of the nurses came out to hug me and congratulate me on being finished. It was very touching. Although I won’t miss the radiation treatments, I will miss seeing the nurses in that office—they were all incredible and I got to know many of them as the week progressed.

Before I left, the nurse practitioner also presented me with the catheter as a souvenir. I will post a photo of it soon so that you can see how big the darn thing is. I can’t quite believe I walked around with it (mostly) inside of me for a week and a half!

I am still scheduled to start chemo on July 26th although there is some question as to whether I will actually start that day. The radiation oncologist wants me to wait another half a week to make sure I’m as healed as possible, but my oncologist says it’s okay to start as planned. Today I asked nurses in both of their offices to have the two of them talk about it and to make sure it’s really okay that I start that day.

While I’m waiting to hear the final verdict on the start date, I will be visiting my friend/neighbor/hairdresser tomorrow to have my hair cut yet a little shorter. Later this week she is going to accompany me to a local wig store to shop for a wig. She has been so helpful; she even called the shop to discuss my situation with the owner, to get information about the selection available, and to make an appointment for me. She is truly watching out for the aesthetic issues involved in my treatment and I am so grateful for her help. I will post a picture of the new haircut as soon as I have one to post.

But right now I’m going to open a bottle of champagne and celebrate the victory of passing another milestone on my journey through and beyond breast cancer. Salut!

July 13, 2007

The Light at the End of the (Radiation) Tunnel

Today marks my fourth day of radiation. The last two treatments will take place on Monday and then that’s it for me. Radiation will be done. I’m still very tired, but it could just as easily be from not being able to sleep well for a week (because of the catheter) as from the radiation.

One side-effect of this type of radiation is skin irritation, just like the skin irritation experienced by patients who receive standard radiation. In regular radiation, I'm told, the skin irritation feels like a really bad sunburn. As Alison described it, “At first, it’s like getting a bad sunburn, but instead of staying out of the sun, you go the next day for your new sunburn.”

With the MammoSite treatment, of course, the radiation is inside your body. However, the radiation burn travels up through the tissue and eventually comes out as a burn on your skin. My skin above the balloon started to hurt a little bit last night, but I just tried to ignore it. As the day has progressed, however, it has gotten worse and now it does feel like I just spent 8 hours in the sun with no sunscreen, except that only my left breast was exposed to it. And it’s pretty uncomfortable. I’m really glad I don’t have to go back for a couple of days.

My plan this weekend is just to rest, to catch up on Evidence reading and lectures (and I need to start preparing for the final which is coming up in less than two weeks!) and to gear myself up for Monday’s catheter removal, which I am told will hurt.

Because we want to try to fit as many medical procedures as possible into as short a time as possible, however, Randy had a vasectomy today. He will be resting this weekend right along with me. He is currently “elevated” in his recliner with a pack of ice and the remote control at hand. So far he’s feeling okay, but many of you have so generously shared your vasectomy horror stories with him and he’s just hoping that he doesn’t end up in one of them. If nothing else, at least we can catch up on our Netflix cache.

July 11, 2007

Radiation Update

So radiation is uneventful and boring. My days look like this: drive...CT scan...radiation...drive...drive...CT scan...radiation...drive. Throw in some eating and sleeping for good measure, and that's about it. I think tomorrow will be the same thing but without the CT scans. By all accounts, it's going well and exactly as it's supposed to.

As for side effects...I'm exhausted already, but I'm not sure if that's from the radiation or just from all the driving. It feels like that deep exhaustion many women (including me) experience during the first trimester of pregnancy, so I'm thinking it's probably the radiation. But it's very manageable, and a good excuse to take naps.

The good news is that after tomorrow morning's treatment I'll already be half-way done and I can start counting down to the finish.

The bottom line is "so far, so good" and I'm doing fine.

July 10, 2007

One Down, Nine to Go

This morning’s radiation appointment was long and anti-climactic. The best part about it was how happy I felt when I was on my way home. It feels so good to be doing something proactive about this. It feels good to be finally getting active treatment besides surgery. And the worst appointment of these ten is over…the rest should be cake.

When I arrived at the radiation oncologist’s office a nurse, Mary, took some blood and then removed all of my surgical dressings. (She didn’t use my port this time since it still hurts from the surgery.) Randy was in the office with me while she was removing the dressings and as she began she looked at him and asked him how the dressing went this weekend. We all paused for split second, Mary waiting for an answer and Randy and I wondering what she was talking about, and then I realized that she was asking him because she thought that he had changed them for me each day. I told her that he wouldn’t know how the dressings went because I did them myself. She looked at me in astonishment and said, “You did it?!” I reaffirmed the fact that I did, and she seemed to think that was pretty great. To be honest, though, I can’t imagine asking Randy to do it. It wasn’t exactly the most pleasant experience. Plus, I probably wouldn’t trust him to do it exactly right. After all, I was given two pages of instructions about how to do it and there’s no guarantee that he actually would have read them. (By the way, Randy’s answer to her question about the dressing was something about the fact that it usually goes pretty well despite the fact that he’s about ten years behind the latest fashions. I married such a comedian.)

Once the dressings were removed we went into a CT scan room. One of the technicians in the room was the mother of one of Blake’s former classmates, so we spent a few minutes trying to figure out why we looked so familiar to one another. It was a bit odd to have her taking positioning pictures of me a few minutes later since the last time I saw her we were both helping out our children’s fifth grade teacher with a Valentine’s Day party, but I got over that pretty quickly. In the CT scan room I laid down on a large square piece of blue plastic filled with some kind of foam. The nurses formed the plastic and foam to my head and upper torso. It hardened and will be the mold that I lay in for each treatment in order to make sure that I am positioned exactly the same each time.

After a few minor adjustments, the technicians took a couple of quick scans that the staff physicists would then use to determine the precise position for the placement of the radioactive seed. I laughed to myself at the further oddity of lying in a room filled with five other people with half of my torso exposed, all of them studying it and discussing it and making adjustments and calculations. Nothing like a little breast cancer to chase away any modesty or hesitation about exposing myself to strangers.

After another quick CT scan, I was shown back to a room where I read Evidence cases for an hour and a half while the doctor and the physicists all consulted about baseball statistics the best placement for the radioactive seed. At one point the doctor came in to tell me why it was taking so long, for which I was grateful. They have to be very careful and very precise about the radioactive seed placement because part of the MammoSite balloon is close to my chest wall. They worked to adjust the radiation by millimeters so that a lower dosage hit that part of the balloon, thereby preventing any damage to the tissue of my chest wall. Once I knew why I was waiting, I agreed that I would much rather have them take their time and make it perfect than risk any kind of damage.

Once they had the positioning figured out, things moved quickly. I was taken into a large empty room, about 14 ft. x 14 ft., that contained only a bed, the radiation machine (about the size of a large vacuum cleaner) and, in one corner of the room, a tri-fold screen. I laid on the bed in my now-hardened mold, the doctor hooked the radiation machine up to my MammoSite catheter, and then everyone (the doctor, the nurse and the physicists) left the room. A few seconds later the doctor’s disembodied voice boomed out through an intercom in the ceiling telling me that we were about to start. I felt nothing while the radiation machine next to me started clicking and humming, and 7 ½ minutes later it was finished. Soon after that, I was on my way home.

I have to go back this afternoon at 4:00 p.m., and then I’ll return Wednesday, Thursday, Friday and again next Monday, twice each day at six hour intervals. I will have CT scans done again this afternoon and tomorrow, but after that each treatment should go rather quickly. I feel absolutely fine and normal right now, so if there will be any side-effects I haven’t experienced them so far.

In addition, Mary told me that while I am there this week I can take advantage of any or all of their special services. They offer the services of a cosmetologist for a make-over, a masseuse, a nutritionist, a spiritual advisor, and a social worker, as well as access to a secluded little zen garden filled with lush green foliage, a waterfall and pond. In fact, between the special services, the muted lighting, and the heated gowns and towels, it’s nearly spa-like. Okay…I admit that you might be a little hard-pressed to find a spa that specializes in exposure to radioactivity and toxic poisons. Not to mention the fact that you probably wouldn’t really want to find one like that. But hey…the glass is half full, right?

July 08, 2007

You Can Help!

My kids have been blessed with some truly wonderful and amazing teachers in their lives. Many of them have touched our lives personally as well as through their work as educators. One of those special teachers is Matthew’s third grade teacher, Michele Busky.

Michele is walking in Avon’s 3-Day Breast Cancer walk in Chicago on August 10th-12th. She is walking because people she knows have been touched by breast cancer and because she feels the need to do what she can to fight. This is her way of fighting.

Avon asks walk participants to commit to raising at least $2,200 before the beginning of the walk on August 10th. Please join me by clicking on this link and by making a donation in support of Michele. Every single donation helps, whether it’s $5.00 or $20.00 or more. In fact, 85% of the donations received for this event benefit the Susan G. Komen for the Cure network. (If you would prefer to send a check rather than making a donation online, just send me an e-mail and I will get Michele’s contact information for you.)

I am so grateful to her for doing this. Please help if you can! Thank you.

July 07, 2007

Just Call Me Robo-Mom*

I’m writing this on Saturday morning while still feeling a little groggy from the general anesthesia. No promises that this will be exceptionally clear or understandable, but I want to try to keep up with everything that is going on.

I arrived at the hospital early Friday morning and was quickly wheeled into the operating room with just a little bit of pre-surgery excitement. The first exciting moment came when I noticed an air bubble traveling quickly through my IV tube toward my hand. I was slightly alarmed because in the back of my mind I remembered hearing some story about the dangers of something like this, so I buzzed for the nurse. She came right in and reassured me that the tiny bubble I saw was perfectly normal and was nothing to be concerned about.

The next exciting moment came when the anesthesiologist told me that I would be receiving sedation instead of general anesthesia for this surgery. I was immediately freaked out, envisioning that I would be awake while they were working inches from my face. The anesthesiologist left and then returned a few minutes later to tell me that my surgeon had actually ordered general anesthesia for me since he had to make a bigger incision than he normally would for my surgery. (This was because it had been so long since my lumpectomy—usually this kind of surgery takes place before the lumpectomy incision has fully healed.) I was very relieved.

The procedure was a bit different from my previous two surgeries because I didn’t receive any kind of sedation before I went into the operating room so I was wide awake when they wheeled me into the room. I took the opportunity to look around and to chat with my surgeon and the nurses, although it wasn’t long before I felt the anesthesia working its way through my veins and I was out.

Once I woke up I recovered for a short time, they took a chest x-ray to make sure the port was placed correctly, and then I left the hospital. I went straight to the radiation oncologist’s office for a teaching appointment. The nurses there showed me how to care for the MammoSite catheter and gave me play-by-play instructions about what would happen during next week’s radiation.

I will describe the MammoSite catheter and the port below the fold. If you’re interested, click below and keep reading. If you prefer to skip the graphic medical details (Dave! :) ), then you may want to stop reading here.

Continue reading "Just Call Me Robo-Mom*" »

July 05, 2007

Moving Right Along

Just a quick update to let you know that things are hopping today. The surgeon got my MRI results and the good news is the images were “clear.” This means that they didn’t see anything else that looks like cancer in my breast and that I am therefore a candidate for the partial-breast radiation. It also means that I am scheduled for surgery bright and early tomorrow morning to have the MammoSite balloon and a mediport implanted. The surgery will be followed immediately by a teaching appointment with the radiation oncologist and I’m guessing that I’ll start radiation on Monday. (I’m waiting to hear back from the radiation oncologist’s office with the exact days and times for this.) The radiation will take place twice a day at six hour (I think) intervals for five days.

Having radiation next week will push the beginning of my chemo treatments back a week. I am planning to ask my oncologist if we can push them back one additional week so that I can take my Evidence final before the chemo begins. (And because we have tickets to go see Jimmy Buffett on July 21st!) I’m also going to cross my fingers that my school will be able to tape class lectures for me next week because I won’t be able to make it to class.

This has all happened so quickly that I’m a little overwhelmed. I haven’t had time to wrap my mind around the fact that I'm having surgery again tomorrow (!) because I’m trying to coordinate the times of all these appointments, next week’s classes, rides for the kids, etc. I’ll update again when I can to let you know how the surgery goes.

July 03, 2007

I'll Take the Chemo With a Side of Fatigue

Today brought my chemotherapy “teaching appointment.” Randy and I met with Nicole, one of the wonderful nurses at my oncologist’s office, who gave us the chemo 411. She described each drug that I would be receiving, how it would be administered, and how long it would take to receive it. She also talked about the side-effects of each drug and how long they would last and told me what I could do to combat those side-effects. Most of what she told me I had already read in various books, but she was able to answer several questions for me. I get to look forward to alopecia (hair loss), nausea, fatigue, bone pain, mouth sores, constipation, and diarrhea, among others. I may not experience any of those, or I may experience some of them, or all of them. The side-effects might last for one day or three days or a week. I left with a handful of prescriptions for some very expensive drugs, including one for a wig (the medical term for which is a "cranial prosthesis"), and a lot of trepidation about what I’m about to go through.

Nicole also gave us a tour of the office. One of the rooms we saw was the chemotherapy room where I will have my treatments, which was lined with twelve big fancy recliners. There were about 4 or 5 people scattered in chairs throughout the room, men and women, some bald, some not. The one common denominator about all the other patients was that they were all older than me.

I didn’t hear anything about the results of my MRI today so I don’t know yet if I’ll actually be starting on the 12th or not, but I do have one more decision to make before then. My surgeon has mentioned several times the possibility of having a port implanted to make delivery of the chemo drugs and blood tests easier by saving me some needle sticks. My oncologist has said that he thinks the best way to receive the chemo is via an IV in the back of my hand. After talking with Nicole today, I think that I would probably prefer to have a port implanted, despite the fact that doing so means an additional surgery. If I end up having surgery to implant the partial-breast radiation catheter I will definitely choose to have a port implanted at that time. If I am not able to do the partial-breast radiation, I’ll have to decide whether to have the port installed or not.

July 02, 2007

MRI Adventures

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The MRI today proved to be yet another new and interesting cancer treatment experience for me. I had it done at Lutheran-General Hospital in Park Ridge on the advice of my oncologist who said they were the best in the area. The technician, Denise, told me the same thing, so I’m going to assume it’s true.

I arrived at the hospital 45 minutes early as instructed, registered and then waited for about 40 minutes to be called back into the MRI area. I changed into a hospital gown and removed all my jewelry and then I was questioned several times about the possibility of there being any metal in my body at all. Once they were sure I was a “safe” candidate for an MRI, a nurse inserted an IV port in my arm and Denise led me into the MRI room.

This time, instead of the machine being a big inner tube, there was a long thin tube waiting for me in the room. I had to lie face down on a table and Denise hooked my IV port up to an IV which would administer a contrast dye half-way through the MRI. She explained to me the importance of holding very still and then she gave me a small rubber ball to hold which was hooked to a tube or wire. She told me that if I needed her I could squeeze the ball. My face was placed in a contraption that provided support across my forehead and on either side of my head. I was looking down through a hole and I would have been able to see only the bottom of the table if not for the nifty periscope that allowed me to look straight ahead and out of the machine. I think this is supposed to help lessen the feeling of claustrophobia. I also think that lying face down is probably much easier and less claustrophobic than lying face up.

The table I was lying on then slid into the machine, Denise left the room, and the MRI began. The whole thing lasted 40 minutes. When Denise first told me that it was going to take that long I was very worried about my ability to hold still for that amount of time in that position. I started out trying to do some labor relaxation breathing, but it was hard to concentrate because of all the noise in the machine. The noises alternated between what sounded like a beating heart deep within the machine to various loud noises that I think signified the pictures being taken. They were all different…one sounded like I was in Notre Dame’s bell tower while the bells were ringing (that was by far the most pleasant one), another sounded like a jackhammer, and one sounded like a Star Wars light saber war going on over my head. The earplugs that Denise inserted into my ears before we began didn’t help much. Later I found out that they usually play relaxing music for patients while they are in the machine, but their CD player was broken so I got silence instead. Since I couldn’t really relax, I tried to concentrate on something specific. I started out thinking about the post I was going to write about the procedure and about my trip to Maui a couple of years ago and ended up thinking about the first three hearsay exceptions and running hearsay hypos in my head. And then it was over. I got dressed, Denise removed my IV, and I was on my way home.

Just to keep things interesting, however, Denise told me that she thought that the doctor was going to want to see my most recent mammogram films in conjunction with reading the MRI results. Since the hospital neglected to tell me that when I scheduled the MRI, the mammogram films were about 40 miles away back at the cancer center near my house. If I want the films to get to the doctor quickly, I have to pick them up and courier them out to him myself. No problem, I thought, I’ll just add that to my schedule since I don’t have anything else to do this week! I don’t know when I’ll actually be able to get the films out there, but I’ll worry about that later.

The MRI wasn’t awful….after all, there were no barium drinks to choke down. I don’t want to have to go through it again anytime soon, however, and I’m glad it’s over. Hopefully I’ll get the results soon, with or without the mammogram films, so that we can really pinpoint the next step. In the meantime, tomorrow I have a teaching appointment at my oncologist’s office where a nurse will go step-by-step over the chemo treatments with me so that I know what to expect.

July 01, 2007

People You Should Know

As impossible as it may seem, there are some benefits to a cancer diagnosis. One is the unexpected result of facing death square in the face, which I will write about in the future. Another benefit, and one which I didn’t expect, is the amazing people that have come into my life because of this diagnosis.

There are actually so many new and wonderful people who have come into my life since I first found the lump back in April that I could probably never name them all. I hope to be able to introduce you to some of the through this blog and today I will start with two.

Alison is another young breast cancer survivor. I met Alison through a mutual friend, Mieke. As soon as Mieke found out about my diagnosis she sent my contact information to Alison, who contacted me immediately with amazing words of encouragement and support. Mieke lives in California, I live in Chicago, and Alison lives in South Carolina, and yet thanks to the wonders of this modern age we have all been able to connect with one another despite the thousands of geographical miles between us.

You’ve seen Alison’s presence in the comments here, but that is just a mere sampling of her presence in my life. She sends me e-mails several times a week and contacts me before every procedure and doctor’s appointment to tell me she is thinking about me. She has described her cancer and radiation experience to me in great detail, sharing what I know are intimate and sometimes painful memories in order to help me know what to expect and to know that I am not alone. We have never met in person and we have never spoken on the phone, and yet she has made a big difference in my life. This is a testament to the power of the Internet, of course, but it’s even more of a testament to the kind of person Alison is.

After I posted the story about my Save the Ta-ta’s t-shirt, Alison clicked over to the website and bought a t-shirt of her own. She sent me the picture a few days ago accompanied by the simple sentiment, "I'm behind you!.” I asked her if I could share the picture with you. So without further ado, I’d like you to meet my friend Alison.
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The other person I’d like you to know about is actually two people—Andy DeYoe and Jon Imerman. During my second week of class this summer, just after my lumpectomy and breast cancer diagnosis, I sat down in the seat that I had chosen during the first week of class and looked at the back of the classmate sitting in front of me. He was wearing a t-shirt with the words “One-on-One Cancer Support” and a website address printed on the back and a yellow LiveStrong bracelet on his wrist. I approached him after class that evening and asked him if he knew someone with cancer. As it turned out, he did indeed know someone with cancer—himself. Andy is a thyroid cancer survivor and is involved with an organization called Imerman Angels.

I had previously met Andy at orientation during his very first week of law school last fall and I had seen him in the halls around school from time to time since then, but I had never spoken with him extensively before and I didn’t really know anything about him. That changed that evening. Andy was kind and supportive and understanding as he told me a little bit about his story and a lot about Imerman Angels. I am still astounded at the fact that of the one hundred seats available in our Evidence class room, we chose to sit in the two seats that put Andy and Imerman Angels right in front of me at a time when I needed them most.

Jon Imerman, a testicular cancer survivor, came up with the idea of Imerman Angels during his fight with cancer. He struggled with the fact that he had a hard time finding other cancer patients and survivors who were like him—he was only 26 when he was diagnosed—and he decided to do something about it. Imerman Angels makes sure that cancer fighters don’t experience the sense of isolation and loneliness that often accompanies a cancer diagnosis by pairing up cancer survivors and cancer fighters with other people who are the same age and have similar life experiences and who have experienced the same kind of cancer.

I had the great pleasure of meeting Jon Imerman in person a few weeks ago. We got together to talk about my experience and my situation and I found a dynamic, passionate man who has devoted himself to easing the experience of other cancer fighters through support and understanding. He paired me up with a breast cancer survivor from his network who knows precisely what I am thinking and feeling and experiencing right now because she is a mother and is my age. His organization is needed and welcomed by cancer fighters of all ages and I feel so lucky to have discovered it. I have posted a permanent link to the Imerman Angels website over in the sidebar on the right.

June 29, 2007

Going Under the Knife....Again

My surgeon called me yesterday to tell me that he had consulted with my radiation oncologist and that he thinks I am a candidate for the partial-breast radiation. This means that the tumor in my breast was not too close to the skin or to my chest wall, both of which would preclude that form of radiation. If the MRI results are also favorable and show no more cancer, the next step would be to schedule yet another surgery to have a balloon catheter placed in the tumor site.

The surgeon said that usually when he performs this surgery it is within a couple of weeks of the initial lumpectomy so the site is still open. Because it’s been a month and a half since my lumpectomy, the tumor site has healed and he’ll have to re-open it in order to insert the balloon. I’m trying to not dwell too much on that because it sounds awful. And I am certainly not looking forward to yet another surgical recovery. But the benefit is that I would only have 5 days of radiation instead of 6-8 weeks, and the gain of 5-7 weeks is very attractive to me.

If the MRI results show any cancer in either of my breasts, we will continue on with the whole breast radiation and I’m fairly certain that a mastectomy will be indicated in that case. It looks like either way I will be having at least one more surgery—the only question is when and how extensive it will be.

June 28, 2007

Test Post

Hi this is Karly, Kim's daughter. I will be posting to give you updates during her treatments if she's not feeling up to it. Hopefully this will be my first and last post!

June 25, 2007

The Mist Begins to Part

Today I had a second appointment with Oncologist #1. I was feeling pretty confused with what I saw as a lot of conflicting information and I was hoping that he would help me put some structure to all of it. And he did.

I still don’t know exactly how the radiation will work out, but at least I have a clearer picture of my chemo plan now. If I end up having the partial-breast (5 day) radiation it might push the plan back a week. I will be going back to the oncologist’s office next Tuesday for a teaching appointment, where I will meet with a nurse and go over in detail what my treatment appointments will be like. The oncologist and I chose Thursday, July 12th as my official chemo start date. The treatments will be every two weeks and will take 2-3 hours.

I chose Thursday because I thought that doing it on Thursday would give me several days to recover before class on Monday night. That works well for the summer, but I don’t know what that means for the fall semester. Right now I’m scheduled to have classes on Tuesday and Thursday next semester. The doctor said that once we start it’s difficult to switch the day of treatment since we’ll be doing the dose dense treatment. I have no idea what I’m going to do about classes, but I’m just kind of shoving that all to the background as much as possible right now and hopefully I will figure it out before August.

I will also need to have a shot of Neuplasta on Friday 24 hours after my chemo treatments. The Neuplasta helps your bone marrow recover from chemo faster so that you’re ready for the next dose in two weeks rather than in three weeks. (The standard time between treatments with a “regular” dose is three weeks.)

My next medical procedure is an MRI, which I have scheduled for this coming Monday. This was recommended by all the doctors that I have seen and as of today is the best imaging technology available to make sure that there is not more detectable cancer in my breast. If there is more in there, I will probably need the whole-breast radiation rather than the partial radiation. In the meantime, the radiation oncologist is consulting with the surgeon to determine whether the location of my tumor precludes partial-breast radiation. If these things fall into place and we determine that I can move forward with partial-breast radiation, I think it will push the chemo back a week or so.

I’m glad to have some definite dates and to feel like I can finally end all the suspense and waiting that seems to be involved in much of this. On the other hand, I’m not looking forward to diving in to all of this.

June 24, 2007

Clear As Mud

I went to see a radiation oncologist on Friday. The visit went well, but was very long. My appointment was at 1:00 p.m. in the afternoon and I didn’t leave the office until 4:15 p.m. Once again, I am just going to give the highlights here. Feel free to ask if you have any questions.

I thought when I started these rounds of appointments that everyone would agree on my treatment and that we would just go ahead and get it started. As it turns out, however, every appointment has added new information to the situation and nothing is straightforward or simple. The radiation oncologist I met with was recommended by Oncologist #1. He is nothing if not thorough, and explained everything to me in great detail. He spent a lot of time answering all my questions and making sure that everything that he was telling me was very clear.

He said that he would agree with the recommendations of the other oncologists, except that he questions whether or not Taxol is indicated given my diagnosis. He also suggested that I might be eligible for a shorter, more intense and localized form of radiation that would take place before the chemo. (This is called MammoSite and is a partial-breast radiation technique as opposed to a whole-breast treatment.) Several things have to fall into place for that to work, and we have to figure those things out soon. Otherwise, his recommendation is the standard 6-8 week radiation treatment which will begin 3-4 weeks after my chemo treatment ends.

The radiation treatments are five days a week, Monday through Friday, at the same time each day. One of the major side-effects of the radiation is fatigue. This concerns me, and I wonder how in the world I’m going to be able to fit daily radiation treatments into my schedule once the fall semester begins and how I’m going to be able to handle law school classes if I’m exhausted. I don’t know the treatment schedule for sure yet, but it looks like finals will fall right in the middle of radiation treatments to top it all off. I have to admit that I am getting more and more worried about how I’m going to be able to handle school and cancer treatments. I’m trying not to worry about it too much until I know exactly how this is all going to fall into place.

Tomorrow I meet with Oncologist #1 again. I originally thought that I would come away from that meeting with a pretty definite schedule and treatment plan. Now I’m not so sure that will happen. I’ll update when I can to let you know what I find out.

June 21, 2007

Hair, Part II

My hairdresser, who as many of you know is my friend and neighbor first and my hairdresser by happenstance, cut off more of my hair last night. A lot more. I went to see her intending to have her give me an intermediate hair cut…a little bit shorter than it was but basically the same style…as part of my plan to transition into short hair. But I didn’t really love the intermediate cut, so I had her cut off more of it. And it’s really short. I’m not sure I was ready for it to be quite this short. Every time I walk by a mirror or a window and catch a glimpse of my head, it kind of takes my breath away.

It’s an odd feeling because I didn’t sit down in the chair excited about getting a new hair cut like I usually do, but instead I felt resigned to taking the next step. Although I like the cut, I’m not feeling that confident just-had-your-hair-cut feeling that usually follows a new style. And it turns out that there was a part of me that thought that maybe this wasn't really going to happen and that maybe it was all just a surreal dream or something. I think I was kind of hoping that one of these doctors would say, "You know, you're okay now and you're not going to need chemotherapy." Each time I see my hair this short, it makes me realize that this is really happening. The shock of it also makes me keep thinking about what’s next. I can’t help but wonder how much more difficult it is going to be when it’s all gone.

I'm considering putting together a photo gallery of hair pictures so that you can see the evolution. I'm not sure yet if I'm going to be able to post them here, but I'm thinking about it.

June 18, 2007

The Glass Is Half Full or The Funny Side of Cancer

I know, I know. It’s not really funny. But actually, when you’re in the middle of it, it can be. At least there are some humorous moments. So to counter the serious nature of this blog so far, here are some of the things that I have found funny.

(Pssst…Mom! You can skip the next couple of paragraphs if you want to!)

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I keep hearing stories about women who have gone through chemotherapy and lost their hair, only to end up with heads full of thick, gorgeous, curly, to-die-for hair when it grows back in.

Additionally, I have read quite a bit about the wonders of reconstructive surgery for women who have mastectomies. If I do end up having a mastectomy, I am quite sure I would follow it up with reconstructive surgery.

In thinking about these possible end results of cancer, I mentioned to Randy that it might not be all bad….I might end up with great hair and the breasts of my dreams. Randy, always thinking about the bottom line, asked me if I would consider the breasts of his dreams. I reminded him that the breasts of my dreams and the breasts of his dreams were quite certainly very different breasts. I also let him know that the breasts of his dreams are probably going to have to remain in his dreams.

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I’ve also been thinking about the fact that my chemotherapy treatment might be coming at a perfect time to help with my Halloween costume. If we are lucky enough to be invited to a costume party this year, I may be able to go as Telly Savalas. A lollypop, a pinky ring and a nose prosthesis, along with my lack of hair, should complete the look perfectly.

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Dealing with cancer treatments each day has brought new discoveries about my abilities as well my limitations. Between the lumpectomy and the lymph node surgery, I ended up with fairly limited use of my left arm. It is getting better each day and I expect to fully recover, of course, but for awhile I found that I couldn’t do everything exactly like I could before the surgery. For example, soon after my lymph node surgery I decided to attempt my regular exercise routine. The walking was no problem, but I knew that my light weight lifting was going to be difficult and painful with my left arm. (And indeed, I was under doctor’s orders not to use it to lift things for awhile after surgery.) I decided that I would attempt a modification of my normal routine using only my right arm. This was easy enough to do until I came to the push-ups. But always up for a challenge, I thought I would give one-armed push-ups a try. As I began to push myself up from the floor using only my right arm, I quickly realized that there was no way that I was ever going to be able to do a one-armed push-up. I’ve scrapped the push-ups until both arms are available to keep me from landing on my face on the floor.

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I have found myself telling all the medical professionals that I come into contact with that I am a law student. I’m pretty sure that subconsciously I think that if they know I am a law student, they will be much more cautious with my treatment for fear of potential lawsuits later. It doesn’t seem to be working out quite the way I want it to, however; no one really seems to be too terribly worried about my ability to sue them for anything.

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A couple of weeks ago I bought one of these t-shirts. It’s a humorous way to advertise breast cancer awareness and I have enjoyed wearing it. The first time I wore it was to the grocery on a recent Saturday morning. I got some interesting looks from fellow shoppers, but the best reaction was from a store employee in the baking aisle.

After we had passed one another heading in opposite directions, I heard him call out from behind me. He said, “Save the what?” I sighed as I turned around, not relishing having to explain the meaning of the word “ta-tas.” I smiled at the gentleman and said, “Save the ta-tas,” hoping that would be enough to clarify things for him. He, in turn, enthusiastically pumped his fist in the air and said, “Finally! A cause I can really get behind!” Both of us started laughing uproariously as we continued on our respective ways down the aisle.

June 17, 2007

Shining, Gleaming, Streaming, Flaxen, Waxen

I had a lot of my hair cut off a couple of weeks ago.

I have had a fairly short haircut for the past several years, but last winter decided that I was ready for a change so I decided to grow out my hair. I didn’t know how long it would last—I figured that I would wake up one day and it would be driving me crazy and I would end up getting it cut short again. But I was doing pretty well, and my hair had just started to reach past my shoulders. I was able to put it in a little ponytail when I worked out and I was starting to look around at some longer hairstyles to try to figure out what direction I might want to go in style-wise. It looks like the universe had other plans for my hair, however.

Losing my hair during chemotherapy, for some reason, is one of the most difficult things for me to face. Give me surgery and medicine and nausea and barium drinks if you must, but please don’t take my hair. I keep hearing recommendations to have your hair cut short just before you begin chemotherapy treatments, for several reasons. One is that it is easier psychologically to lose chunks of very short hair than it is to lose pieces of long hair. Another reason is that by cutting your hair yourself, you are “losing” it on your own terms rather than waiting for the chemo to do its worst.

Both reasons made sense to me, so when I saw my hair dresser a couple of weeks ago I told her that I’d like her to cut it relatively short. My thought was that if I start now and gradually go shorter over the next several weeks, it will be easier to go really short just before chemo starts.

It was difficult to watch her cut those first long, blond pieces from the bottom of my hair. She kindly carried them over to the garbage rather than letting them fall on the floor. The longest part of my hair falls to the middle of my neck in the back now. I wasn’t sure at first that I would get used to it very quickly, but I like it. It’s a familiar style and one that I like and have worn in the past, so that makes it easier. And I’ve had super-short hair before, so hopefully when I cut it yet a little shorter it won’t be too shocking for me—or for anyone else.

Of course, just when I thought I was handling it all pretty well, I caught a couple minutes of a recent Today show. Fittingly, one of the stories featured on the show was about a salon in Connecticut that caters to women who are going through chemotherapy and who are getting ready to lose their hair. Watching it didn’t make it any easier to appreciate my short hair--which is long compared to that of the women shown in the story—knowing that I might have it only temporarily.

When I was at the oncologist’s office I flipped through a head covering catalog for cancer patients they had sitting on the desk. There was a wide variety of head coverings shown in the catalog: many styles and colors of scarves, hats and wigs. I found it hard to look through the catalog. It wasn’t quite like looking through the bi-monthly Ann Taylor advertisement brochure and I didn’t dog ear any pages to mark the things I just “had to have.” I don’t want to lose my hair and I don’t want to shop for scarves and hats.

I’ve been thinking a lot about the industry that has grown up around this need for head coverings for female cancer patients. It’s quite easy to find companies all over the internet that sell a variety of wigs and scarves and turbans and other head coverings for women who have lost their hair because of chemo. But you never hear about similar offers for men. I can only conclude that it is because it is perfectly acceptable—and indeed it’s fashionable these days—for men to be bald in our society. Men must mourn the loss of their hair to chemotherapy just as much as women, but the rest of the world handles their hair loss completely differently from that of women.

I recently read a story about a woman who never let anyone, even her husband, see her bald while she was going through chemo. She even covered her head at night while she slept. I’ve also heard about women, such as those featured in this book, who proudly sport their bald heads throughout their chemo treatments, covering them only to protect them from the cold or sun. I have no idea how I’m going to handle it once I actually lose my hair, but I hope that I can be even half as brave as those women.

June 14, 2007

Another One Down

Today I met with Oncologist #2 at Rush-Presbyterian in Chicago. This was my first experience with a big university/big city doctor’s office and it was definitely different from what I’m used to. They were very efficient and business-like and much less personal than the smaller offices and hospitals that I’ve been dealing with so far.

The doctor, however, was amazing. She was also business-like and efficient, but had a very calm, confident, and reassuring bedside manner. Her name is Dr. Cobleigh and as I’ve mentioned before she is well-known and very well-respected in the Chicago area (and maybe in the country). Unlike Oncologist #1, she let me tape record our conversation. She was deliberate and thorough and I felt as if she would have spent as much time with me as I needed, no matter how long that might have been. In reality, our time together was only about 45 minutes. (Additionally, her husband is a federal prosecutor in Chicago. Interesting that my oncologists all have attorneys in the family, isn’t it?)

Once again, I’m just going to give a summary of what Dr. Cobleigh recommended rather than recording every detail here. If you have questions, just let me know! Essentially, she agreed with Oncologist #1’s recommendations of a chemo treatment of Adriamycin and Cytoxan followed by radiation. She also recommended genetic counseling and possibly genetic testing based on my age and the fact that my (also young!) cousin had breast cancer. (Jenny, we need to talk about that soon!) The difference was that she also recommended the addition of another chemotherapy drug called Taxol. Interestingly, she suggested the consideration of a dose dense chemotherapy treatment, which means four doses of AC every two weeks instead of every three weeks followed by Taxol every two weeks for an additional four doses. This would extend my treatment time from nine weeks to twelve weeks (not including radiation time). I am definitely not thrilled about that, but the subsequent decrease in the risk of reoccurrence is worth the additional three weeks, I think. Based on how I feel about Dr. Cobleigh’s expertise and knowledge in this area, I tend to think that her recommendation is probably the way to go. I have a little more research to do before I make the final decision, including discussing her recommendations with Oncologist #1.

Dr. Cobleigh also cleared up some confusion that I had about my pathology report...it turns out that my cancer was both ductal carcinoma in situ and infiltrating ductal carcinoma. She also let me know that my cancer was Stage I, which I kept forgetting to ask the other doctors.

It was good to confirm Oncologist #1’s opinion and to find out that we are on the right track as far as treatment options. I’m not excited about the extra weeks of baldness and nausea, but in the grand scheme of things it is probably the way to go. This was a long, exhausting day and I’m feeling a bit mentally fried right now. I’m going to try not to think about any of this for the rest of this evening and revisit it tomorrow after a good night’s sleep.

June 07, 2007

The Dating Game

I had my first date with Bachelor Oncologist #1 today. He asked me lots of questions about myself and my interests and then we had some scintillating repartee about all the things he could do for me. Then we had a lovely dinner and saw a movie.

Okay, it didn’t go quite that way, although he did ask me lots of questions about myself and my health history and cancer experience. I felt like the whole visit went really, really fast. I didn’t feel like he was rushing me, but there was just so much information to take in and I kept feeling like I couldn’t write fast enough and at the same time process everything he was telling me. Randy was with me, so at least there was another pair of ears there. I asked the doctor if I could record our conversation, but he said that his lawyer recommends that his patient conversations not be recorded. (His lawyer, I suspect, is his brother, who is a litigation attorney in Chicago and also, coincidentally, a Loyola Law School alum.)

I don’t exactly have a treatment plan…or rather, I have a treatment plan but it’s just the barest outline of one right now. I will skip some of the details here in the interest of your time and internet bandwidth, but if you have specific questions feel free to ask.

Basically, Oncologist #1 thinks that my case indicates a common chemotherapy treatment of Adriamycin with Cytoxan (“AC”). (Unfortunately, I have now added those two words to my word processor’s dictionary.) This regimen typically starts four weeks after the last surgery, which for me means right around the end of June. My tumor was negative for both hormone receptors and HER-2 (this is good!) which means that another common chemo drug, Herceptin, is not indicated. (That’s good because Herceptin is commonly prescribed indefinitely.) The AC is administered intravenously once every three weeks for four administrations. That part of treatment, therefore, will take about nine weeks.

There are side effects to these drugs. As expected, I will lose my hair. The Adriamycin can cause heart problems and the Cytoxan can cause bladder problems. The drugs can also cause nausea, mouth sores, fatigue, and low white and red blood cell and platelet counts. I have to watch for fever, which combined with low white blood cell counts can be the sign of a bacterial infection and requires immediate hospitalization and treatment. There are various medicines that can help with the mouth sores and nausea, for example, but in general none of this sounds like very much fun. I may have none of these side effects, or many of them, but will probably have at least some of them.

Oncologist #1 also thought that radiation may be indicated in my case. I will be making an appointment with a radiation doctor to talk about the possible radiation treatments. It sounds like my choices might be to start a two-week radiation treatment before chemo begins, or to do one after chemo that takes six weeks. I will know more about that once I’ve seen the radiation doctor.

I also spoke with him about genetic testing. It is much more complicated than I originally thought because there are many difficult decisions that flow from the results of genetic testing, such as decisions about whether or not to remove your breasts and/or ovaries. I will be revisiting those subjects soon, but first I have to wrap my mind around the rest of this information.

At the end of the appointment, the doctor asked me if I had thought about getting a second opinion. I told him that I already had an appointment with Oncologist #2 and his reaction was quite heartening. He obviously respects this doctor and basically said that he would agree with whatever she said. That made me feel like I definitely chose the right person for a second opinion. That appointment is set for a week from today.

Next steps: Other than the second opinion, in the next couple of weeks I will see a radiation doctor and get an echocardiogram to make sure my heart can take the Adriamycin. I will then return to Oncologist #1 in two weeks and we will determine the exact plan of attack, including when, where and how. I will also begin to think about genetic counseling and depending on how I’m feeling about everything else I might make an appointment with a genetic counselor.

I am feeling pretty overwhelmed by all of this information right now, and I am just trying to figure out what it all means, how it will all work, and how I can fit it all into my schedule. I’m still not exactly sure what this means for my class schedule or how much help I may or may not need. Those might be questions that I will only be able to answer with time and experience, however. I’d prefer to have it all planned out, but I’m learning very quickly that I don’t really get to plan any of this out. Cancer, apparently, pretty much has its own schedule and as much as I’d like to be, I am not the boss of it.

June 02, 2007

What You Can Do For Me

Based on the reaction I’ve received about the end of my previous post, I want to expand on those thoughts a little more.

One common thread running through every one of your phone calls and e-mails and cards and kind words is your offer to help. You all ask me, “Can I do anything?” Well, I can finally answer your question. I know what you can do.

If you are a woman, learn how to do a breast self-exam; and then do it. Pick up the phone right now and schedule an annual mammogram if you haven’t done it yet. Take a few hours off work; get a sitter for the kids…whatever you need to do to make the time. Don’t put it off.

If you are a man, make sure that the women you love--your wife, mother, sister, daughter, friend--are keeping a close eye on their breast health. There is no cure for breast cancer—the only way to get rid of it is to find it and to treat it.

As Americans we need to get over our discomfort in talking about breasts in order to keep an open dialog about this. If it's out of sight and out of conversation, it's out of mind. Join me in keeping the conversation going.

And don’t make the mistake, as I did, of thinking that it can’t happen to you. It can. By all accounts I should be at a low risk for breast cancer. I have three children and I had them before I was 35. I breastfed all three of them. I’m no health nut (as those who have seen my proclivity for martinis, champagne, and decadent chocolate desserts can attest to), but I live a healthy lifestyle—I exercise regularly and eat lots of fruits, vegetables, and whole grains. I drink very, very little caffeine and I avoid NutraSweet like the plague. I have never smoked, I’m only 41, and I take calcium and vitamin D supplements. And yet I have breast cancer. (There is the possibility that my cancer could be caused by a gene. I will eventually have genetic testing done to determine if that is the case.) But whether it’s caused by a gene or not, the point is that you can’t do anything about it until you find it. And to find it you must look for it by doing monthly self-exams and by having annual mammograms. I found a lump in my breast by accident...but if I had been doing regular self-exams I probably would have caught it sooner.

If you want to do something for me, please do this: be vigilant about breast cancer. Do it for all the people who love you, but most of all, do it for yourself. I don’t want anyone I know to ever have to go through what I am going through.

I posted these links yesterday, but I think they're worth reposting:
Click here for a link to an online video from the Susan G. Komen foundation about how and when to do a self-exam.
Click here for an article from breastcancer.org about how to do breast self-exams.

In addition, click here for a printable PDF file containing BSE (Breast Self-Exam) instructions.

May 31, 2007

The Early Bird Catches the Worm Cancer

I saw my surgeon today to get the results of the lymph node biopsy, and it’s all (mostly) good news. The lymph nodes were completely clear of cancer. In addition, the thyroid biopsy also came back clear. I have to follow up with the thyroid issue later to make sure everything is really okay, but it is not cancer.

In my elation at the receipt of such great news, I asked my surgeon hopefully if the combination of all the testing results changed his opinion that there was a 90% chance that I will have to have chemotherapy. He said his opinion had changed, but that now he thinks there is a 100% chance that any oncologist will recommend chemo for me based on my age and the type of cancer. The only question, he said, is which chemo treatment will be right for me. And there might be more surgery in my future if I end up needing a port for a particular chemotherapy medicine.

I have an appointment with one oncologist next Thursday and I have a call into a prominent oncologist at Rush-Presbyterian in Chicago to make an appointment for a second opinion. Once I meet with them I should have a Plan For Treatment, and then I will feel like I can really be on my way past all of this.

I am lucky, you know. I caught this early and I did something about it immediately and that is why the news is so good today. If I had waited to see what happened or if the tumor had been deeper within my breast, I might not have found it. I had not had a mammogram in three years. I was planning to get one this year, but it wasn’t on the calendar and you know how that goes. Maybe I would have postponed it longer because I was busy with school or work or the kids’ activities. It was a fluke and pure accident that I found the lump when I did and the way I did. Please don’t let the same thing happen to you. Do your self-exams* ** and schedule your mammograms. (And get used to hearing me say that, because it’s my new mantra!)

* Click here for a link to an online video from the Susan G. Komen foundation about how and when to do a self-exam.
** Click here for an article from breastcancer.org about how to do breast self-exams.

May 27, 2007

Surgery Redux

If I never had to have surgery again, it would be too soon. I am tired of it already. I am tired of the recuperation time and of the pain and of not being able to do the things I would normally do.

As I mentioned in my update post on Friday, the surgery went well. When I first arrived at the hospital, my surgeon injected radioactive fluid in four different spots in my breast around the area where the lump had been. The fluid was allowed to work its way into my system for about 10 minutes, and then a radiologist took several pictures of my chest area from different angles. For some reason I think that some dye was also eventually injected into the area, maybe during surgery, but I don’t remember for sure.

This time the incision was made under my left arm just below my armpit. The pictures allowed the surgeon to see which lymph nodes might have been affected by the cancer and to remove only those nodes. This is called sentinel lymph node surgery. I understand that this is relatively new technology, and that before the use of this method a surgeon would remove all the lymph nodes to be certain that he or she had gotten all the cancer. My surgeon took 4-6 nodes, which will be tested for cancer. I should have those results in a week. While I was out, he also did a needle biopsy on the lump they discovered in my thyroid last week.

Prior to this last surgery, they told me that it would be a bit more invasive than the lumpectomy and they were right. I feel like it took me longer after this surgery to feel something other than “bad” and I am still in some pain today. However, I have refused to take any more pain medication other than Advil because I hate feeling that out of it. I have too many things to get done to feel like Paula Abdul! Despite my good intentions, though, it’s been slow going today since I don’t have much use of my left arm. I’m not supposed to lift anything with it and it hurts. I can’t type with it because my hand and arm get numb so I am typing this one-handed (which takes forever!). I’ll be very happy when I can get back to feeling relatively normal.

And now we just settle in for a long wait. I will see my surgeon at the end of this week to check my post-surgical progress and hopefully he will have the results of the lymph node and thyroid tests by then. I have an appointment with an oncologist scheduled for next week after which I hope to have a treatment plan. From there, I hope, it will be onward and upward and as far away from breast cancer as possible.

May 25, 2007

I'm heading to the hospital this morning for lymph node surgery. I'll update as soon as I can.

UPDATE: Surgery went well and I'm back at home. Details later.

May 24, 2007

The Language of Cancer

I have always loved languages. My favorite subject in school was English and when I got to college I majored in Russian and French. (I also took an ill-fated Italian class at 8:00 a.m. one semester, in which I mostly spoke French because my poor tired mind could only fall back on what was most familiar when faced with Italian grammar and pronunciations that early in the morning.) Languages and grammar make sense to me, and I am lucky enough to have the ability to pick up new languages easily. When I got to law school I discovered that a large part of what I was learning was based on yet another language containing such vocabulary as “equitable servitudes” and “subject matter jurisdiction” and “de novo”. One language that I never planned to learn, however, was the language of cancer.

Being diagnosed with cancer is the equivalent of a crash course in medical terminology. Suddenly I’m throwing around terms like “histologic grade” and “alopecia” and “hormone receptors” as if they are just another slang term. To be on such familiar terms with these words goes beyond what we all pick up during our weekly viewing of ER and enters the realm of too much information. I don’t want to know what “lymphedema” means, and I don’t want to include the definition of “in situ” in my new store of Latin terms.

But I don’t have a choice if I want to understand what’s going on. In between my reading of Evidence chapters these days, I can be found sitting at my computer reading up on chemotherapy treatments and the long-term prognoses of other breast cancer survivors. Sometimes I think that all the medical information is going to take up all the room that is supposed to be reserved for legal information. Hopefully I can find the room for both.

I am on the train on my way to my second Evidence class period as I write this, and I find myself looking forward to my time in class just as much as I suspected I might. Only one other student in my class (and the professor) knows that I have breast cancer, so when I’m there I don’t have to be “okay” or reassure anyone that I am feeling fine. My classmates don’t expect me to be feeling any other way right now. It’s as close as I can come right now to a mini-vacation from thinking about breast cancer.

May 18, 2007

Good News Today!

Today I spent most of the day at the hospital going through scans to determine whether the cancer has spread to the rest of my body. Rather than having to wait the standard 2-3 days for the results, however, my wonderful doctor called me with the results just a few hours later. The news is good: the breast cancer has not metastasized, so the rest of my body is cancer free. However, the doctor told me that the scan did turn up a lump on my thyroid. It is unrelated to the breast cancer, but a concern nonetheless. He is going to exam my thyroid next week before the lymph node surgery and possibly biopsy the lump while I am out. I can’t wait for that.

When I arrived at the hospital today they immediately started an IV and then served me the first of three luscious barium cocktails. I spent a lot of time trying to convince myself that it tasted just like a tropical drink and that if I just pretended I was on vacation somewhere and that the glass contained rum, I’d be fine. Each serving was 16 oz of fruity goodness, and I had 40 minutes to drink each one. As I sipped I read Evidence and tried to concentrate on objections and hearsay exceptions. It didn’t work very well. In the middle of the first drink, the bone scan technician called me into another room and injected a radioactive fluid into my IV which had to run through my body for three hours prior to the bone scan. Then it was back to the waiting room to keep drinking.

I wasn’t the only one being treated to tropical drinks in the waiting room. I was most amused by a guy sitting a couple of seats over from me who looked like he was about 20 years old or so. At one point when the nurse/waitress brought him his third round, he asked her if he could play the PSP that he had been eyeing at the children’s table set up in the corner of the room. She said he could and he immediately became engrossed in a game. So engrossed, in fact, that he forgot to drink his barium. I started on my third drink before he had finished even a couple of sips of his. He finally remembered it, but only drank about 1/3 before the technician came to get him. I laughed to myself as she scolded him for not drinking all of it and when she made him take “one big last drink.”

My surgeon, who I like more and more every day, came into the waiting room while I was choking down my drinks to check up and see how I was doing. He also gave me his cell phone number so I could call him for the results later in the afternoon. When I eventually called him later in the day he didn’t have the results, but got them and called me back 20 minutes later.

When I finally finished the barium cocktails, I waited for a very uncomfortable 20 minutes until the CT technician came and got me. Once in the CT scan room, she had me lie down on a narrow table and she inserted two tubes into my IV. (I was thrilled that I was able to keep my regular clothes on since it was cold in the room.) Then she left the room and the scan began. The narrow table that I was on slid in and out of the tunnel while the machine told me when to hold my breath and when to breathe. I was very happy that the machine was more like a giant inner tube than a big long tube like I expected.

After a couple of couple of preliminary images, the technician came back in the room and started the IV drips. One was saline and the other was dye. I could feel the dye as it quickly tracked through my body. It felt warm, but also caused a strange feeling, as if I were very tired. It caused a metallic taste to rise up my throat and into my mouth, and was altogether pretty uncomfortable. Once again the table slid in and out of the machine which told me when to hold my breath and when to breathe, and a few minutes later it was over. The entire thing took maybe 20 minutes.

I had an hour before the bone scan was to begin, and so on the advice of the CT technician I went to the cafeteria and had a bowl of soup even though I was not hungry. I returned to the imaging center and then the bone scan technician called my name and led me to a different room. I lay down on yet another narrow table and she kindly covered me with a warmed blanket. (She also told me that I felt so cold because of the barium.) The table slid forward into the machine (which was also not a big long tube, but more similar to a giant square inner tube) and then a plate was lowered down until it was about half an inch from my face. Then very, very slowly the machine moved from my head to my feet. The entire thing took maybe another 20 minutes, and then I was out of there.

It’s good to be able to check things off the treatment list. Next up…surgery

May 17, 2007

Diagnosis

I saw the surgeon today and the news was exactly what I thought it would be. I have breast cancer. He removed everything that was there, including some additional tissue around the tumor and some of my muscle. The margins are all clear, which is good. The tumor was 1.8 cm, which isn’t small, but it isn’t big. Even though I expected this news, it doesn’t make it any easier to hear. I am relieved to know, though, and to be able to begin to fight.

Tomorrow I will spend the day at the hospital going through a series of scans of my body to find out if the cancer has spread. A week from tomorrow I will return to the hospital for yet another surgery to remove any infected lymph nodes. After that, I will meet with a couple of oncologists so that we can determine what my treatment plan will be. The surgeon suggested that since I am young there is a 90% chance that the oncologists will recommend chemotherapy. Radiation is another possible treatment, and I can elect to have a mastectomy if I want to. I have decided not to pursue a mastectomy at this time since there isn’t any more cancer in my breast. However, if later genetic testing reveals that I am genetically predisposed to breast cancer I may decide to do that.

I am still processing all of this, I think, and maybe I am in a little bit of shock right now. It has all happened so very, very quickly. I would never have predicted two months ago that I would be facing something like this.

I sent an e-mail out to family and friends today to let them know what was going on. The response I have received has been absolutely overwhelming. I can see that this support is the thing that is going to get me through all of this. I don’t know if I could do it without knowing that all of these people are behind me. They have been amazing. I know that many of you are reading this now, and I wish that I could convey to you all how much your words of kindness and compassion and love have meant to me. That sense of peace I was talking about yesterday? I think that this is where it comes from.

May 15, 2007

Surgery

Yesterday morning I had a lumpectomy, and now am waiting for the pathology report to come back. Following the surgery, the surgeon told me that he wanted me to make an appointment to see him in his office to go over the pathology report with me rather than calling me on the phone. That, combined with the fact that he took more tissue than he originally planned, has me convinced that whatever he found is bad, as in cancer bad. I won’t know anything until Thursday morning, however, so for now I’m just playing a waiting game.

In the meantime, I received the first assignment for the Evidence class I’m scheduled to take this summer. The class begins on Monday and the assignment is lengthy enough to keep me busy between now and then. The idea of a law school casebook reading assignment is surprisingly comforting to me. I never thought I’d say that briefing cases and reading procedural rules could be comforting, but I think it is because it is familiar and I know how to do that. I haven’t quite figured out how to have cancer yet.

April 30, 2007

Putting the Band Back Together

For those of you new to the blog, welcome! For those of you who are old friends and former readers, welcome back! I have decided to return to a form of publication that I have used before as a way to keep friends and family informed about my present journey. This time, however, the subject will be a bit different than it was the last time.

In the way of background for some of you, first I should mention that I had a blog from November 2003 until January 2007 where I wrote about my journey to and through law school as a 40-something mother of three. I enjoyed it mostly because the result of my writing was that I met many people all around the country. Some were other law student parents, some were parents with other jobs, some were not parents but were law students…you get the idea. A few months ago I shut down the blog. I was so busy trying to balance school and family and I felt guilty about not writing; taking the whole thing “off the air” seemed like the best solution. I’ve continued to read the blogs of others in the meantime, but I haven’t had the pressure of having to come up with things to write about myself.

My former blog was completely anonymous…I didn’t list my name or where I went to school or the names of my children or pets or family members. Few of my friends or family members or fellow students knew about the blog. As I heard more and more about bloggers who lost or missed jobs because of their blogs or who got into other kinds of trouble because of things they had written, I became increasingly paranoid about my own web presence. This paranoia made the decision to stop writing that much easier.

And then I found a lump in my breast.

It was one night several weeks ago, and I was lying in bed reading as I do almost every night. I absentmindedly reached down to adjust the neckline of my pajamas which was bothering me, and as I did so my hand brushed across the top of my breast and I felt what seemed like a lump. I felt it again, and again, and again, my mind fiercely denying what my fingers were telling me was there. But it was, very unmistakably, a lump about the size of an almond.

My husband was out of town on a golf trip, so I lay in bed and thought about the implications of this all by myself. I had a hard time believing that it was really there or that I had really felt it, and every awful thought about cancer and mortality ran through my head. It scared me enough that I called my doctor the very next morning, sobbing as I told the receptionist why I wanted to see her as soon as possible.

A few days later she confirmed the presence of an almond-sized lump and sent me to get a diagnostic mammogram and an ultrasound and gave me the name of surgeon to see. I week later, after the mammogram and ultrasound, I met with a radiologist. He told me that the best thing we could have discovered from the images was that the lump I felt was a cyst. He said it was definitely not a cyst, but the abnormality that appeared on the images was something that he would suggest I see a surgeon about. He said that my choices would probably be to have it biopsied or to have surgery and have it removed.

A week later I finally saw a surgeon who also said that my choices were to have it biopsied or to have it removed. I have chosen to have it removed, since the surgeon also said that even if I just had it biopsied to start he would recommend eventual removal because of the size and location of the lump. I decided to skip the middle step and go right for the removal.

My former blog was all about my rather unique experiences as an older law student with three children. I think I can safely say that this experience makes me even more unique in the law student community. However, I can also safely say that I would never have chosen to have it all work out this way.

As for law school, as many of you know I am in a part-time program and I am exactly half way done. I have two more years left, and I am planning to take an Evidence class this summer. I am still planning to take the class unless we discover something worse than a lump as a result of the surgery.

I have decided to use this blog as a way to keep my family and friends up to date about what’s going on with me rather than sending out frequent e-mails. My hope is that the blog will be short-lived…that this will all turn out to be nothing.