Had I Known

by Barbara Ehrenreich

  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. Or I could choose to do nothing at all beyond mentally exhorting my immune system to exterminate the traitorous cellular faction. 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 Siamese twin dragging along behind me, a hysteric really, dangerously overreacting, in my case, to everyday allergens and minute ingestions of sugar. I will put my faith in science, even if this means that the dumb old body is 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—can fit me in; the oncologist will see me. Welcome to Cancerland.

  Fortunately, no one has to go through this alone. Thirty 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 websites devoted to it, not to mention newsletters, support groups, a whole genre of first-person breast-cancer books; even, for a while, 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 veteran and Bush’s nominee for ambassador to Hungary Nancy Brinker. Komen organizes the annual Race for the Cure, which attracts about a million people—mostly survivors, friends, and family members. Its website provides a microcosm of the new breast-cancer culture, offering news of the races, message boards for accounts of individuals’ struggles with the disease, and a “marketplace” of breast-cancer-related products to buy.

  More so than in the case of any other disease, breast-cancer organizations and events feed on a generous flow of corporate support. Nancy Brinker relates how her early attempts to attract corporate interest in promoting breast cancer “awareness” were met with rebuff. A bra manufacturer, importuned to affix a mammogram-reminder tag to his product, more or less wrinkled his nose. Now breast cancer has blossomed from wallflower to the most popular girl at the corporate charity prom. While AIDS goes begging and low-rent diseases like tuberculosis have no friends at all, breast cancer has been able to count on Revlon, Avon, Ford, Tiffany, Pier 1, Estée Lauder, Ralph Lauren, Lee Jeans, Saks Fifth Avenue, JCPenney, Boston Market, Wilson athletic gear—and I apologize to those I’ve omitted. You can “shop for the cure” during the week when Saks donates 2 percent of sales to a breast-cancer fund; “wear denim for the cure” during Lee National Denim Day, when for a $5 donation you get to wear blue jeans to work. You can even “invest for the cure,” in the Kinetics Asset Management’s new no-load Medical Fund, which specializes entirely in businesses involved in cancer research.

  If you can’t run, bike, or climb a mountain for the cure—all of which endeavors are routine beneficiaries of corporate sponsorship—you can always purchase one of the many products with a breast-cancer theme. There are 2.2 million American women in various stages of their breast-cancer careers, who, along with anxious relatives, make up a significant market for all things breast-cancer-related. Bears, for example: I have identified four distinct lines, or species, of these creatures, including “Carol,” the Remembrance Bear; “Hope,” the Breast Cancer Research Bear, which wears a pink turban as if to conceal chemotherapy-induced baldness; the “Susan Bear,” named for Nancy Brinker’s deceased sister, Susan; and the new Nick & Nora Wish Upon a Star Bear, available, along with the Susan Bear, at the Komen Foundation website’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; pay your bills with special BreastChecks or a separate line of Checks for the Cure. “Awareness” beats secrecy and stigma, of course, but I can’t help noticing that the existential space in which a friend has earnestly advised me to “confront [my] mortality” bears a striking resemblance to the mall.

  This is not, 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 sees her work as more of a “crusade” than a business. This year she expects to ship 10,000 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 try ever so tactfully to suggest that this is how they may, in rare cases, be perceived—so far no one has complained. “I just get love letters,” she tells 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. 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) contains, among other items, a tube of Estée Lauder Perfumed Body Crème, a hot-pink satin pillowcase, an audiotape “Meditation to Help You with Chemotherapy,” a small tin of peppermint pastilles, a set of three small inexpensive rhinestone bracelets, a pink-striped “journal and sketchbook,” and—somewhat jarringly—a small 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 is that regression to a state of childlike dependency puts one in the best frame of mind with which to endure 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, need whatever help I can get, and start wading out into the web in search of practical tips on hair loss, lumpectomy versus mastectomy, how to select a chemotherapy regimen, what to wear after surgery and what to eat when the scent of food sucks. There is, I soon find, far more than I can 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 warm words of encouragement for the 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 c
old 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 can’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 scares me most in the short term—“chemo brain,” or the cognitive deterioration that sometimes accompanies chemotherapy. I compare myself with everyone, selfishly impatient with those whose conditions are less menacing, shivering over those who have 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.

  Feminism helped make the spreading breast-cancer sisterhood possible, and this realization gives me a faint feeling of belonging. Thirty years ago, when the disease went hidden behind euphemism and prostheses, medicine was a solid patriarchy, women’s bodies its passive objects of labor. The women’s health movement, in which I was an activist in the seventies and eighties, legitimized self-help and mutual support, and encouraged women to network directly, sharing their stories, questioning the doctors, banding together. It is hard now to recall how revolutionary these activities once seemed, and probably few participants in breast-cancer chat rooms and on breast-cancer message boards realize that when postmastectomy patients first proposed meeting in support groups in the mid-1970s, the American Cancer Society responded with a firm and fatherly “no.” Now no one leaves the hospital without a brochure directing her to local support groups and, at least in my case, a follow-up call from a social worker to see whether I am safely ensconced in one. This cheers me briefly, until I realize that if support groups have won the stamp of medical approval this may be because they are no longer perceived as seditious.

  In fact, aside from the dilute sisterhood of the cyber (and actual) support groups, there is nothing very feminist—in an ideological or activist sense—about the mainstream of breast-cancer culture today. Let me pause to qualify: You can, if you look hard enough, find plenty of genuine, self-identified feminists within the vast pink sea of the breast-cancer crusade, women who are militantly determined to “beat the epidemic” and insistent on more user-friendly approaches to treatment. It was feminist health activists who led the campaign, in the seventies and eighties, against the most savage form of breast-cancer surgery—the Halsted radical mastectomy, which removed chest muscle and lymph nodes as well as breast tissue and left women permanently disabled. It was the women’s health movement that put a halt to the surgical practice, common in the seventies, of proceeding directly from biopsy to mastectomy without ever rousing the patient from anesthesia. More recently, feminist advocacy groups such as the San Francisco–based Breast Cancer Action and the Cambridge-based Women’s Community Cancer Project helped blow the whistle on “high-dose chemotherapy,” in which the bone marrow was removed prior to otherwise lethal doses of chemotherapy and later replaced—to no good effect, as it turned out.

  Like everyone else in the breast-cancer world, the feminists want a cure, but they even more ardently demand to know the cause or causes of the disease without which we will never have any means of prevention. “Bad” genes of the inherited variety are thought to account for fewer than 10 percent of breast cancers, and only 30 percent of women diagnosed with breast cancer have any known risk factor (such as delaying childbearing or the late onset of menopause) at all. Bad lifestyle choices like a fatty diet have, after brief popularity with the medical profession, been largely ruled out. Hence suspicion should focus on environmental carcinogens, the feminists argue, such as plastics, pesticides (DDT and PCBs, for example, though banned in this country, are still used in many countries that grow the produce we eat), and the industrial runoff in our groundwater. No carcinogen has been linked definitely to human breast cancer yet, but many have been found to cause the disease in mice, and the inexorable increase of the disease in industrialized nations—about 1 percent a year between the 1950s and the 1990s—further hints at environmental factors, as does the fact that women migrants to industrialized countries quickly develop the same breast-cancer rates as those who are native born. Their emphasis on possible ecological factors, which is not shared by groups such as Komen and the American Cancer Society, puts the feminist breast-cancer activists in league with other, frequently rambunctious, social movements—environmental and anticorporate.

  But today theirs are discordant voices in a general chorus of sentimentality and good cheer; after all, breast cancer would hardly be the darling of corporate America if its complexion changed from pink to green. It is the very blandness of breast cancer, at least in mainstream perceptions, that makes it an attractive object of corporate charity and a way for companies to brand themselves friends of the middle-aged female market. With breast cancer, “There was no concern that you might actually turn off your audience because of the lifestyle or sexual connotations that AIDS has,” Amy Langer, director of the National Alliance of Breast Cancer Organizations, told the New York Times in 1996. “That gives corporations a certain freedom and a certain relief in supporting the cause.” Or as Cindy Pearson, director of the National Women’s Health Network, the organizational progeny of the women’s health movement, puts it more caustically: “Breast cancer provides a way of doing something for women, without being feminist.”

  In the mainstream of breast-cancer culture, one finds very little anger, no mention of possible environmental causes, few complaints about the fact that, in all but the more advanced, metastasized cases, it is the “treatments,” not the disease, that cause illness and pain. The stance toward existing treatments is occasionally critical—in Mamm, for example—but more commonly grateful; the overall tone, almost universally upbeat. The Breast Friends website, for example, features 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 bemoans not cancer or chemotherapy but the end of chemotherapy, and humorously proposes to deal with her separation anxiety by pitching a tent outside her oncologist’s office. So pervasive is the perkiness of the breast-cancer world that unhappiness requires a kind of apology, as when “Lucy,” whose “long-term prognosis is not good,” starts her personal narrative on breastcancertalk.org by telling us that her story “is not the usual one, full of sweetness and hope, but true nevertheless.”

  There is, I discover, 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-PC. 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 identify themselves, AA-style, as we convene to share war stories and rejoice in our “survivorhood”: “Hi, I’m Kathy and I’m a three-year survivor.” For those who cease to be survivors and join the more than 40,000 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 Darwinian culture that has grown up around breast cancer, martyrs count f
or little; it is the “survivors” who merit constant honor and acclaim. They, after all, offer living proof that expensive and painful treatments may in some cases actually work.

  Scared and medically weakened women can hardly be expected to transform their support groups into bands of activists and rush out into the streets, but the equanimity 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.