Bright-Sided (4 page)

In fact, there’s been a history of struggle over breast cancer treatments. In the seventies, doctors were still performing radical mastectomies that left patients permanently disabled on the affected side—until women’s health activists protested, insisting on less radical, “modified” mastectomies. It had also been the practice to go directly from biopsy to mastectomy while the patient was anesthetized and unable to make any decisions—again, until enough women protested. Then, in the nineties, there was a brief fad of treating patients whose cancers had metastasized by destroying all their bone marrow with high-dose chemotherapy and replacing it with bone marrow transplants—an intervention that largely served to hasten the patient’s death. Chemotherapy, radiation, and so on may represent state-of-the-art care today, but so, at one point in medical history, did the application of leeches.

I knew these bleak facts, or sort of knew them, but in the fog of anesthesia that hung over those first few weeks, I seemed to lose my capacity for self-defense. The pressure was on, from doctors and loved ones, to do something right away—kill it, get it out now. The endless exams, the bone scan to check for metastases, the high-tech heart test to see if I was strong enough to withstand chemotherapy—all these blurred the line between selfhood and thing-hood anyway, organic and inorganic, me and it. As my cancer career unfolded, I would, the helpful pamphlets explain, become a composite of the living and the dead—an implant to replace the breast, a wig to replace the hair. And then what will I mean when I use the word “I”? I fell into a state of unreasoning passive aggressivity: They diagnosed this, so it’s their baby. They found it, let them fix it.

I could take my chances with “alternative” treatments, of course,
like punk novelist Kathy Acker, who succumbed to breast cancer in 1997 after a course of alternative therapies in Mexico, or actress and ThighMaster promoter Suzanne Somers, who made tabloid headlines by injecting herself with mistletoe brew. But I have never admired the “natural” or believed in the “wisdom of the body.” Death is as “natural” as anything gets, and the body has always seemed to me like a retarded Siamese twin dragging along behind me, a hysteric really, dangerously overreacting, in my case, to everyday allergens and minute ingestions of sugar. I would put my faith in science, even if this meant that the dumb old body was about to be transmogrified into an evil clown—puking, trembling, swelling, surrendering significant parts, and oozing postsurgical fluids. The surgeon—a more genial and forthcoming one this time—could fit me in; the oncologist would see me. Welcome to Cancerland.

The Pink Ribbon Culture

Fortunately, no one has to go through this alone. Forty years ago, before Betty Ford, Rose Kushner, Betty Rollin, and other pioneer patients spoke out, breast cancer was a dread secret, endured in silence and euphemized in obituaries as a “long illness.” Something about the conjuncture of “breast,” signifying sexuality and nurturance, and that other word, suggesting the claws of a devouring crustacean, spooked almost everyone. Today, however, it’s the biggest disease on the cultural map, bigger than AIDS, cystic fibrosis, or spinal injury, bigger even than those more prolific killers of women—heart disease, lung cancer, and stroke. There are roughly hundreds of Web sites devoted to it, not to mention newsletters, support groups, a whole genre of first-person breast cancer books, even a glossy upper-middle-brow monthly magazine,
Mamm
. There are four major national breast cancer organizations,
of which the mightiest, in financial terms, is the Susan G. Komen Foundation, headed by breast cancer survivor and Republican donor Nancy Brinker. Komen organizes the annual Race for the Cure®, which attracts about a million people—mostly survivors, friends, and family members. Its Web site provides a microcosm of the breast cancer culture, offering news of the races, message boards for accounts of individuals’ struggles with the disease, and uplifting inspirational messages.

The first thing I discovered as I waded out into the relevant sites is that not everyone views the disease with horror and dread. Instead, the appropriate attitude is upbeat and even eagerly acquisitive. There are between two and three million American women in various stages of breast cancer treatment, who, along with anxious relatives, make up a significant market for all things breast cancer related. Bears, for example: I identified four distinct lines, or species, of these creatures, including Carol, the Remembrance Bear; Hope, the Breast Cancer Research Bear, which wore a pink turban as if to conceal chemotherapy-induced baldness; the Susan Bear, named for Nancy Brinker’s deceased sister; and the Nick and Nora Wish Upon a Star Bear, which was available, along with the Susan Bear, at the Komen Foundation Web site’s “marketplace.”

And bears are only the tip, so to speak, of the cornucopia of pink-ribbon-themed breast cancer products. You can dress in pink-beribboned sweatshirts, denim shirts, pajamas, lingerie, aprons, loungewear, shoelaces, and socks; accessorize with pink rhinestone brooches, angel pins, scarves, caps, earrings, and bracelets; brighten up your home with breast cancer candles, stained glass pink-ribbon candleholders, coffee mugs, pendants, wind chimes, and night-lights; and pay your bills with Checks for the Cure™. “Awareness” beats secrecy and stigma, of course, but I couldn’t
help noticing that the existential space in which a friend had earnestly advised me to “confront [my] mortality” bore a striking resemblance to the mall.

This is not entirely, I should point out, a case of cynical merchants exploiting the sick. Some of the breast cancer tchotchkes and accessories are made by breast cancer survivors themselves, such as “Janice,” creator of the Daisy Awareness Necklace, among other things, and in most cases a portion of the sales goes to breast cancer research. Virginia Davis of Aurora, Colorado, was inspired to create the Remembrance Bear by a friend’s double mastectomy and told me she sees her work as more of a “crusade” than a business. When I interviewed her in 2001, she was expecting to ship ten thousand of these teddies, which are manufactured in China, and send part of the money to the Race for the Cure. If the bears are infantilizing—as I tried ever so tactfully to suggest was how they may, in rare cases, be perceived—so far no one had complained. “I just get love letters,” she told me, “from people who say, ‘God bless you for thinking of us.’ ”

The ultrafeminine theme of the breast cancer marketplace—the prominence, for example, of cosmetics and jewelry—could be understood as a response to the treatments’ disastrous effects on one’s looks. No doubt, too, all the prettiness and pinkness is meant to inspire a positive outlook. But the infantilizing trope is a little harder to account for, and teddy bears are not its only manifestation. A tote bag distributed to breast cancer patients by the Libby Ross Foundation (through places such as the Columbia-Presbyterian Medical Center) contained, among other items, a tube of Estée Lauder Perfumed Body Crème, a hot pink satin pillowcase, a small tin of peppermint pastilles, a set of three small, inexpensive rhinestone bracelets, a pink-striped “journal and sketch book,” and—somewhat jarringly—a box of crayons. Marla Willner, one of the
founders of the Libby Ross Foundation, told me that the crayons “go with the journal—for people to express different moods, different thoughts,” though she admitted she has never tried to write with crayons herself. Possibly the idea was that regression to a state of childlike dependency puts one in the best frame of mind for enduring the prolonged and toxic treatments. Or it may be that, in some versions of the prevailing gender ideology, femininity is by its nature incompatible with full adulthood—a state of arrested development. Certainly men diagnosed with prostate cancer do not receive gifts of Matchbox cars.

But I, no less than the bear huggers, needed whatever help I could get and found myself searching obsessively for practical tips on hair loss, how to select a chemotherapy regimen, what to wear after surgery and eat when the scent of food sucks. There was, I soon discovered, far more than I could usefully absorb, for thousands of the afflicted have posted their stories, beginning with the lump or bad mammogram, proceeding through the agony of the treatments, pausing to mention the sustaining forces of family, humor, and religion, and ending, in almost all cases, with an upbeat message for the terrified neophyte. Some of these are no more than a paragraph long—brief waves from sister sufferers. Others offer almost hour-by-hour logs of breast-deprived, chemotherapized lives:

Tuesday, August 15, 2000: Well, I survived my 4th chemo. Very, very dizzy today. Very nauseated, but no barfing! It’s a first. . . . I break out in a cold sweat and my heart pounds if I stay up longer than 5 minutes.

Friday, August 18, 2000: . . . By dinnertime, I was full out nauseated. I took some meds and ate a rice and vegetable bowl from Trader Joe’s. It smelled and tasted
awful to me, but I ate it anyway. . . . Rick brought home some Kern’s nectars and I’m drinking that. Seems to have settled my stomach a little bit.

I couldn’t seem to get enough of these tales, reading on with panicky fascination about everything that can go wrong—septicemia, ruptured implants, startling recurrences a few years after the completion of treatments, “mets” (metastases) to vital organs, and—what scared me most in the short term—“chemo brain,” or the cognitive deterioration that sometimes accompanies chemotherapy. I compared myself with everyone, selfishly impatient with those whose conditions were less menacing, shivering over those who had reached Stage IV (“There is no Stage V,” as the main character in the play
Wit
, who has ovarian cancer, explains), constantly assessing my chances.

But, despite all the helpful information, the more fellow victims I discovered and read, the greater my sense of isolation grew. No one among the bloggers and book writers seemed to share my sense of outrage over the disease and the available treatments. What causes it and why is it so common, especially in industrialized societies?
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Why don’t we have treatments that distinguish between different forms of breast cancer or between cancer cells
and normal dividing cells? In the mainstream of breast cancer culture, there is very little anger, no mention of possible environmental causes, and few comments about the fact that, in all but the more advanced, metastasized cases, it is the “treatments,” not the disease, that cause the immediate illness and pain. In fact, the overall tone is almost universally upbeat. The Breast Friends Web site, for example, featured a series of inspirational quotes: “Don’t cry over anything that can’t cry over you,” “I can’t stop the birds of sorrow from circling my head, but I can stop them from building a nest in my hair,” “When life hands out lemons, squeeze out a smile,” “Don’t wait for your ship to come in . . . swim out to meet it,” and much more of that ilk. Even in the relatively sophisticated
Mamm
, a columnist bemoaned not cancer or chemotherapy but the end of chemotherapy and humorously proposed to deal with her separation anxiety by pitching a tent outside her oncologist’s office. Positive thinking seems to be mandatory in the breast cancer world, to the point that unhappiness requires a kind of apology, as when “Lucy,” whose “long-term prognosis is not good,” started her personal narrative on [http://breastcancertalk.org] breastcancertalk.org by telling us that her story “is not the usual one, full of sweetness and hope, but true nevertheless.”

Even the word “victim” is proscribed, leaving no single noun to describe a woman with breast cancer. As in the AIDS movement, upon which breast cancer activism is partly modeled, the words “patient” and “victim,” with their aura of self-pity and passivity, have been ruled un-P.C. Instead, we get verbs: those who are in the midst of their treatments are described as “battling” or “fighting,” sometimes intensified with “bravely” or “fiercely”—language suggestive of Katharine Hepburn with her face to the wind. Once the treatments are over, one achieves the status of “survivor,” which is how the women in my local support group identified themselves, A.A.-style, when we convened to share war
stories and rejoice in our “survivorhood”: “Hi, I’m Kathy and I’m a three-year survivor.” My support group seemed supportive enough, but some women have reported being expelled by their groups when their cancers metastasized and it became clear they would never graduate to the rank of “survivor.”
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For those who cease to be survivors and join the more than forty thousand American women who succumb to breast cancer each year—again, no noun applies. They are said to have “lost their battle” and may be memorialized by photographs carried at races for the cure—our lost brave sisters, our fallen soldiers. But in the overwhelmingly positive culture that has grown up around breast cancer, martyrs count for little; it is the “survivors” who merit constant honor and acclaim. At a “Relay for Life” event in my town, sponsored by the American Cancer Society, the dead were present only in much diminished form. A series of paper bags, each about the right size for a junior burger and fries, lined the relay track. On them were the names of the dead, and inside each was a candle that was lit after dark, when the actual relay race began. The stars, though, were the runners, the “survivors,” who seemed to offer living proof the disease isn’t so bad after all.

Embracing Cancer

The cheerfulness of breast cancer culture goes beyond mere absence of anger to what looks, all too often, like a positive embrace of the disease. As “Mary” reports, on the Bosom Buds message board: “I really believe I am a much more sensitive and thoughtful person now. It might sound funny but I was a real worrier before. Now I don’t want to waste my energy on worrying. I enjoy life so much more now and in a lot of aspects I am much happier now.” Or this from “Andee”: “This was the hardest year of my life but also in many ways the most rewarding. I got rid of the baggage,
made peace with my family, met many amazing people, learned to take very good care of my body so it will take care of me, and reprioritized my life.” Cindy Cherry, quoted in the
Washington Post
, goes further: “If I had to do it over, would I want breast cancer? Absolutely. I’m not the same person I was, and I’m glad I’m not. Money doesn’t matter anymore. I’ve met the most phenomenal people in my life through this. Your friends and family are what matter now.”
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