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.
One of the first things Carr talks about in her documentary is selling her New York apartment and moving in with her parents. Her parents accompany her to most of her appointments and her mom acts as her “cancer secretary.” In her book, she explains that her parents wanted her close and she wanted to be close to them. She tells the reader that the only time she was alone was after they tucked her into bed at night. As soon as I read this, I knew that Carr and I were in different worlds. There is no possible way that I could or would have moved in with my parents after my diagnosis…nor would they have wanted me to! They live close and have been a constant presence in my life before and since my diagnosis, but I have my own life and they have theirs. For someone like me, there is no going home to mom and dad’s house when the going gets rough.
Another luxury that Carr had as a young, single woman was her ability to make her diagnosis and treatment a full-time job. Keep in mind that she has a very rare, incurable kind of cancer and there are not many doctors who are even familiar with it, let alone who have treated other patients with the same thing. So for her it’s a quest for information and expertise as much as anything else. For someone with a “common” cancer, like me, it’s easy to find doctors who are familiar with breast cancer and my cancer is definitely treatable. Even so, I agree that those initial weeks and months after such a diagnosis are months of research and learning—kind of a crash course in medicine. But as a wife/law student/mother of three kids, I didn’t have the time or the opportunity to make my cancer quest a full-time job. Neither, I suspect, do most people who are diagnosed unless they are in Carr’s position—young, single, and with little responsibility for anyone other than themselves.
This difference is highlighted again in Carr’s next step, which is to travel the country seeking out potential cures and treatments. While I would love to have the opportunity and time to do that, there are some logistical problems to such a plan such as my house, husband, and again, those three darn kids of mine. I don’t think any of them would be too excited about the prospect of me travelling around looking for a way to prevent a recurrence while they all just went about their lives. (And besides, who would keep the family calendar up-to-date and running smoothly if I was galavanting around the country on a Cancer Cure Tour?)
Along those same lines, in her book Carr recommends a "cancercation"...a trip somewhere to recuperate and revitalize. Carr’s cancercation consisted of not only her trip across the country, but a stay in a Zen monastery. In what universe can a mom (or dad, for that matter!) of young kids pack her bags and head off to a monastery as an escape from the everyday grind of having cancer? Or even to a long spa weekend or “an afternoon lying on a soft blanket in a pretty park?” I could barely find time to do anything like that B.C. (Before Cancer), but once I found the lump my “free time” became filled up with the full-time cancer job. Between the surgeries and radiation and reading and phone calls and chemo and doctors visits I’ve hardly had time for grocery shopping and taking the dogs out, let alone embarking on a relaxing spa vacation. It’s a wonderful thought and I know all about the whole “you need to take time for yourself” thing, but as any fellow parent knows that kind of time is hard to come by when you have kids whether you have cancer or not.
One of the things Carr discovers in her effort to deal with her diagnosis is the importance of nutrition, and she embarks on a radical change in her diet. While I agree with the importance of nutrition and have embarked on my own pretty radical diet overhaul (and I have lots to share with you in the future about what I've learned), I also have a family to feed. I am lucky that they are on board (for the most part) with the idea of more healthful eating, but there is no way that any of the four of them would agree to live on mostly vegetables and lots of fiber with me. In her movie, Carr talks about the number of hours a week she spent preparing her healthy food when she first began to focus on her diet—and that was just for herself. I would love to find that kind of time to work on meal prep, but I can’t spend my time in the kitchen creating abundant and perfectly-balanced vegetarian meals for myself unless I want the rest of my family to starve.
I don’t want to take anything away from Carr’s message, because I really love her attitude toward cancer and toward the hand she’s been dealt. She never seemed to think about just lying down and giving up—she’s a fighter, and I admire that. I also think there is a lot that anyone can get out of her book. And I certainly don’t expect one single book or philosophy about cancer to address every individual cancer situation. I think what I’m railing against here is the idea that people like me are very much an underrepresented class (this is beginning to sound like a Con Law lecture) in the cancer world. I am young, but I’m not that young. But I’m not old. I have young children and am still enjoying my youth. I have an established marriage and family and perennial garden, but I’m nowhere near retirement (or menopause!) age. In her book, Carr talks about the same thing. She says that she was frustrated with the lack of information about the unique problems facing young women with cancer. She writes:
Everything was geared toward either kids, or people much older than me, and most of it was either really sappy or really depressing. I hadn’t raised children, gotten to the end of my career, entered a second marriage, or buried my parents yet.
But here’s the thing…I haven’t done those things, either! And yet I am in a very different place in my life than she is, and have issues that she can’t possibly imagine.
Carr highlights other women who have cancer in her book, and there is at least one other 40-something woman whose experience is highlighted. However, there is no mention of this woman’s children, if she has any. Carr also shares the experience of two young women who are mothers…but their children are very young. One had her first baby after she had cancer and the other one was pregnant when she was first diagnosed.
Heather recently wrote about being a parent with cancer with children at home and about how difficult it is to find support for people like us. Fighting cancer is a very intense, personal, all-consuming fight. Parenting while fighting cancer brings up issues that are just not addressed frequently or thoroughly in most what-to-expect-when-you-have-cancer books or other resources.
As mothers, we pour so much of ourselves and our energy into our kids. We wash their underwear and toilets, we make sure they have warm coats and bedtime stories, we drive them to and from school and activities, and we cheer them on from the sidelines and the audience. We will them, with everything ounce of our being, to be safe and healthy and we hurt when they hurt and we are thrilled and happy when they are thrilled and happy. In so many ways, the needs of our kids take preference over our own, especially when they are young. In fact, there is advice everywhere you turn about how moms need to take more time for themselves. Then cancer comes along and suddenly we don’t have a choice anymore. We have to take more time for ourselves, but instead of going to a spa or the gym or book club, we are going to chemo and radiation and doctors’ offices. Our energy is turned toward getting back on our feet after chemo treatments and on fighting against this disease so that we can be around to watch our kids go to prom and graduate and go to college and get married. The trick is in finding a way to balance our intense new personal needs with theirs. There is plenty of discussion about balancing motherhood with a career these days, but where is the discussion about balancing motherhood with cancer? How exactly do we do that?