Breast Cancer and the Mind/Body Thing
I have breast cancer. That in and of itself isn't so unusual, given that something like one in eight women contract breast cancer at some point in their lives. Having cancer has made me take a hard look at my life, who I am, where I'm going, and what's truly important. Again, not so unusual a response. I engage in theology and philosophy, so of course my thoughts turned to the mind/body dichotomy. Here, perhaps, not your usual response.
I'm fat. My mind/body connection has never been all that wonderful. My mind rules. I'll eat because I want, for comfort, for boredom, and only rarely because my body feels hungry. My mind rules. I have bad knees. I'm not supposed to squat or do stairs. Great, but I'll do what I want, regardless of whether or not it'll hurt. My mind rules.
Until I was trying to get pregnant, my mind ruled. Yet no matter how hard I tried, I couldn't will myself pregnant. I couldn't will the miscarriage not to happen, nor could I will the eventual pregnancy. I couldn't will the baby to hurry up and take less than 24 hours of labor, though God knows I tried. I couldn't will her not to need open heart surgery at three months of age, nor now with her at 10-years-old can I will her not to be an evolving pre-teen.
It all started with Descartes. Trying to answer the question of how mental activities relate to the physical body, he posited that human existence can be split into Spirit (mind/man) and Body (matter/woman). Later philosophers tried to answer that question through materialism (everything is inherit in matter, in various states and movement) and idealism (the ultimate reality is that of the non-physical, non-material), to name [End Page 29] two trends of thought. I could never accept Descartes, partly because of his inherent sexism and partly because I just couldn't accept the body as only a vehicle for spirit. Yet other modes of thought are as extreme. I always sensed that there was something, some way, of merging it all into some coherent whole. Sometimes I stare out my window into the night and feel so very strongly that if I could somehow shift my perception just a little (how? to what?) I would have the answer.
Beware of what you wish for; the cosmos has a tendency to give it to you in strange ways. First came the pregnancy. For the longest time I felt like I had an alien growing inside me, something that I had no control over. I like control. I could flail against this lack for nine months or decide to accept this as part of my nature. I found that I could do that—during the pregnancy. I felt more at one and at peace with my body than ever before. Granted, it still smacked of dualism— my body and I were more at peace, still separate, yet for the moment, connected. This lasted until Kayla's weaning. At that point, I wanted my body back in its proper place: subservient to my mind.
Fast forward ten years, till the day that I went to my family doctor with an inverted nipple and a hard spot underneath it. I had waited a couple months since the onset of symptoms because…well, because I was scared and didn't want to deal. What if it was just a clogged duct? So I massaged it and put hot compresses on it. That felt good, but did nothing to alleviate the symptoms. I tried to fool myself by saying that it didn't feel like we're told a lump feels like—a hard pea (or some other small, round vegetable) inside the breast. My partner, whose late wife died from breast cancer and presumably has some experience with lumps, said that it wasn't cancer. My doctor took one feel at it, got very serious, looked up at me and said he thought it was cancer and wouldn't let us leave unless we promised to go down the hill to the cancer clinic. We stopped breathing, and promised. Thus began the nightmare.
I didn't have health insurance. My previous job's Cobra had run out a few months before and while I had looked for private insurance, it was all expensive and not very good. In the midst of the stress of the first visit, a social worker asked me questions about insurance and since we said that my partner might be able to provide it, and since I was living with him, there was nothing available to me to help with payment. I expect that you have to be destitute to get any assistance. It isn't enough to not be able to afford it, or to run up debts trying to pay. Destitute. Luckily, my partner managed to get me on his policy by naming me his "opposite-sex domestic partner." What if I hadn't been "opposite- sex?" What if he worked for a company that wouldn't insure anything but legal husband and wife? While I consider myself quite lucky that I have access to such insurance, even at a high premium, getting the paper work done did delay getting my biopsy by three weeks.
I held on to the tiniest bit of hope that the surgeon had given me—that he'd be happy if I ended up not having cancer. I held on as best I could. The biopsy made that impossible. My new hope was that I'd be node-negative, with no cancer in the nodes so they could stay intact, decreasing the odds of a reoccurrence and the risk of lymphadema. The mastectomy made that impossible. I'm stage three, with a tumor that had grown babies in each quadrant of my breast, and no lymph nodes. I need both chemotherapy and radiation, and then continued hormone therapy. The statistics give me a one in four chance of making it past ten years. There's no reason that I'm not that one.
It's a misnomer to say that I have cancer. [End Page 30] They cut out the cancer and at this moment I'm cancer-free, according to the doctors. Chemo, radiation and hormone therapy are supposed to keep it that way. Given my new awareness, I paid special attention to Race for the Cure this year. But where do I fit? Am I a survivor? Not yet, since I'm still in treatment. There was no other way to identify myself. I don't have cancer—and even if I did, categorizing myself as a "victim" (as their Website does) feels very wrong. I am no one's victim. I still haven't figured out what to call myself. What I do know is that I'm angry to have my entire identity focused on cancer.
I'm in the middle of chemotherapy. My instinct was to deny that this is happening, to try, as I put it to my doctor, to be the little woman in need of car repair. Not to ask questions, not to know what chemicals they're using to poison my body, not to ask about side effects—to just try and ignore this was happening to me and to trust the doctors.
That all lasted maybe a week. By then I needed to have all the information I could possibly gather. It helped, a bit, to put me more in control. Well, not really. It's not like the fact that I know how the drugs work means that they will work, or that I'll only get this or that side effect. What it does do is give me power. The doctors, nurse practitioners and nurses are less intimidating. I know what they know (well, sort of); they just have more experience. I understand how Neulasta (a drug to help increase white cells) and Arenesp (a drug to help increase red cells) differ. I explained it as I understood it to the pharmacist and he was astonished that I had gotten it right. His level of respect and discourse was much higher afterwards. I like that. Knowledge is power.
Yet no amount of knowledge is going to tell me how my body will react to each new cycle, to each new drug. Every body's different; every cycle is different. Each cycle I wait to feel how my body will respond to the poison in my system. I must be aware of the slightest pain or "wrongness" in my body.
My attitude affects how well the chemo works. I can't afford to allow myself to think that my mind rules and my body will follow. I'm finding possibly for the first time in my life that I must listen, really listen, to what my body says and wants. I have to sleep when I'm tired, not when it's convenient. I have to limit my activities. Sometimes I have to stop midway through a grocery shop and sit down for a bit. There comes that pesky mind/body thing again.
More than that, my eating has had to change. The chemo has affected my taste buds. I haven't had a diet Coke or chocolate in months. No chocolate! And just when I need serotonin enhancers. I get full more quickly. I've managed to lose about 20 pounds. When I listen to my body, I feel better. Simple to say, yet I've never been able to do it before. Somehow the mind/body split seems less of a split lately.
Yet the better the chemo works, the more I have to keep reminding myself that every bad feeling is more dead cancer cells. I do a meditation before bed, based on mindful breathing and the concept that God breathed into our bodies the breath of life. It was late and I was tired the first time I did this, so great [End Page 31] liturgy it's not. Breathe in through my nose, think "God in," breathe out through my mouth, think "cancer out." It does relax me and I hope it works as well as the archers my father visualized killing immature white cells in his fight against leukemia.
I'm going to miss chemo. The chemo center is almost entirely women's space. Every once in awhile I see a man receiving chemo, but usually the only men there are partners to someone receiving chemo. The pharmacist is a man. Everyone else are women. The space is supportive. Those administering chemo are loving and motherly. They hold you while you cry. They commiserate with you when you need to vent. They tell you that you're beautiful without hair. In hushed tones they talk about how they are better than the doctors at accessing ports and putting in IV's, and they're right. We laugh. Since moving from a major metropolitan area, partnered with a woman, identified as a lesbian and coming here almost two years ago, partnered with a man, identifying as bisexual I have not found much woman's space. I miss it. Strange to find it in chemotherapy.
If cancer wasn't so incredibly scary—oh! and life-threatening, let's not forget that—I'd say that it's been on the whole a positive experience. Sure, the side-effects are less than pleasant; to say it politely, there's been a good deal of pain, and I'm very much at the place where I don't want anyone touching me. But it's brought me closer to friends and family and I've been able to reach out for help and support in ways I never could before. I've met some amazing people and have a chance to think about ultimate issues. The mind/body question hasn't been answered completely for me. This is a challenge to find some way to integrate both together, to fight together, so that I live. At least that implies that I am both mind and body, incomplete without both. That will have to do for now.