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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.

Ignore the Dire Warning!

I have a ton of reading to do for school, but in the interests of procrastination I’m bringing you a couple of blog posts instead. I do have my casebook open next to me while I write, so that counts, right? Granted, it’s open to a non-printed page that I used to take notes during my chemo appointment yesterday, but at least it looks like I’m working on law school assignments. Even though the only beings in the room other than me are the two dogs and the cat and they couldn’t care less whether it looks like I’m working or not.

On to the important stuff. Or not so important stuff.

Several people have recently informed me that if you search for my blog on Google it comes up with a warning that says that visiting it might harm your computer. After some research into this warning and some help from my favorite blog guru, I’m pretty certain I can assure you that my site won’t harm your computer. Without getting into too many details, there is a random image file somewhere on the server that is causing it to look like my site is hackable, but it’s probably just a conservative warning. The site administrator will be looking into it eventually and will fix it, but for now rest assured that it’s okay. He’s a busy man, though, what with his work defending individual rights out in Montana, so it might be awhile before he gets to it.

If you need to search for my website on a search engine, for now, you can use one of the others although you may have to dig for it a little bit. While searching for The Merits of the Case brings up my site as the #2 listing on Google, it’s buried way down on page 18 as listing #173 on search.yahoo.com. It is listed on page 9 of ask.com, on page 17 of altavista.com, and as #14 on dogpile.com. But there are no warnings listed on any of those search engines.

Ah, the joys of the internets.

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.