The First Year of the Rest of Your Life, a collection of brief narratives with a foreword by Nancy Brinker and a share of the royalties going to the Komen Foundation, is filled with such testimonies to the redemptive powers of the disease: “I can honestly say I am happier now than I have ever been in my life—even before the breast cancer.” “For me, breast cancer has provided a good kick in the rear to get me started rethinking my life.” “I have come out stronger, with a new sense of priorities. Never a complaint about lost time, shattered sexual confidence, or the long-term weakening of the arms caused by lymph-node dissection and radiation. What does not destroy you, to paraphrase Nietzsche, makes you a spunkier, more evolved, sort of person.
The effect of this relentless brightsiding is to transform breast cancer into a rite of passage—not an injustice or a tragedy to rail against, but a normal marker in the life cycle, like menopause or graying hair. Everything in mainstream breast-cancer culture serves, no doubt inadvertently, to tame and normalize the disease: The diagnosis may be disastrous, but there are those cunning pink rhinestone angel pins to buy and races to train for. Even the heavy traffic in personal narratives and practical tips, which I found so useful, bears an implicit acceptance of the disease and the current barbarous approaches to its treatment: You can get so busy comparing attractive head scarves that you forget to question a form of treatment that temporarily renders you both bald and immuno-incompetent. Understood as a rite of passage, breast cancer resembles the initiation rites so exhaustively studied by Mircea Eliade: First there is the selection of the initiates—by age in the tribal situation, by mammogram or palpation here. Then come the requisite ordeals—scarification or circumcision within traditional cultures, surgery and chemotherapy for the cancer patient. Finally, the initiate emerges into a new and higher status—an adult and a warrior—or, in the case of breast cancer, a “survivor.”
And in our implacably optimistic breast-cancer culture, the disease offers more than the intangible benefits of spiritual upward mobility. You can defy the inevitable disfigurements and come out, on the survivor side, actually prettier, sexier, more femme. In the lore of the disease—shared with me by oncology nurses as well as by survivors—chemotherapy smooths and tightens the skin; helps you lose weight; and, when your hair comes back, it will be fuller, softer, easier to control, and perhaps a surprising new color. These may be myths, but for those willing to get with the prevailing program, opportunities for self-improvement abound. The American Cancer Society offers the “Look Good…Feel Better” program, “dedicated to teaching women cancer patients beauty techniques to help restore their appearance and self-image during cancer treatment.” Thirty thousand women participate a year, each copping a free makeover and bag of makeup donated by the Cosmetic, Toiletry, and Fragrance Association, the trade association of the cosmetics industry. As for that lost breast: After reconstruction, why not bring the other one up to speed? Of the more than 50,000 mastectomy patients who opt for reconstruction each year, 17 percent go on, often at the urging of their plastic surgeons, to get additional surgery so that the remaining breast will “match” the more erect and perhaps larger new structure on the other side.
Not everyone goes for cosmetic deceptions, and the question of wigs versus baldness, reconstruction versus undisguised scar, defines one of the few real disagreements in breast-cancer culture. On the more avant-garde, upper-middle-class side, Mamm magazine—which features literary critic Eve Kosofsky Sedgwick as a columnist—tends to favor the “natural” look. Here, mastectomy scars can be “sexy” and baldness something to celebrate. The January 2001 cover story features women who “looked upon their baldness not just as a loss, but also as an opportunity: to indulge their playful sides…to come in contact, in new ways, with their truest selves.” One decorates her scalp with temporary tattoos of peace signs, panthers, and frogs; another expresses herself with a shocking purple wig; a third reports that unadorned baldness makes her feel “sensual, powerful, able to re-create myself with every new day.” But no hard feelings toward those who choose to hide their condition under wigs or scarves; it’s just a matter, Mamm tells us, of “different aesthetics.” Some go for pink ribbons; others will prefer the Ralph Lauren Pink Pony breast-cancer motif. But everyone agrees that breast cancer is a chance for creative self-transformation—a makeover opportunity, in fact.
Now, cheerfulness, up to and including delusion and false hope, has a recognized place in medicine. There is plenty of evidence that depressed and socially isolated people are more prone to succumb to diseases, cancer included, and a diagnosis of cancer is probably capable of precipitating serious depression all by itself. To be told by authority figures that you have a deadly disease, for which no real cure exists, is to enter a liminal state fraught with perils that go well beyond the disease itself. Consider the phenomenon of “voodoo death”—described by ethnographers among, for example, Australian aborigines—in which a person who has been condemned by a suitably potent curse obligingly shuts down and dies within a day or two. Cancer diagnoses could, and in some cases probably do, have the same kind of fatally dispiriting effect. So, it could be argued, the collectively pumped-up optimism of breast-cancer culture may be just what the doctor ordered. Shop for the Cure, dress in pink-ribbon regalia, organize a run or hike—whatever gets you through the night.
But in the seamless world of breast-cancer culture, where one website links to another—from personal narratives and grassroots endeavors to the glitzy level of corporate sponsors and celebrity spokespeople—cheerfulness is more or less mandatory, dissent a kind of treason. Within this tightly knit world, attitudes are subtly adjusted, doubters gently brought back to the fold. In The First Year of the Rest of Your Life, for example, each personal narrative is followed by a study question or tip designed to counter the slightest hint of negativity—and they are very slight hints indeed, since the collection includes no harridans, whiners, or feminist militants:
Have you given yourself permission to acknowledge you have some anxiety or “blocks” and to ask for help for your emotional well-being?
Is there an area in your life of unresolved internal conflict? Is there an area where you think you might want to do some “healthy mourning”?
Try keeping a list of the things you find “good about today.”
As an experiment, I post a statement on the Komen.org message board, under the subject line “angry,” briefly listing my own heartfelt complaints about debilitating treatments, recalcitrant insurance companies, environmental carcinogens, and, most daringly, “sappy pink ribbons.” I receive a few words of encouragement in my fight with the insurance company, which has taken the position that my biopsy was a kind of optional indulgence, but mostly a chorus of rebukes. “Suzy” writes to say, “I really dislike saying you have a bad attitude toward all of this, but you do, and it’s not going to help you in the least.” “Mary” is a bit more tolerant, writing, “Barb, at this time in your life, it’s so important to put all your energies toward a peaceful, if not happy, existence. Cancer is a rotten thing to have happen and there are no answers for any of us as to why. But to live your life, whether you have one more year or 51, in anger and bitterness is such a waste…I hope you can find some peace. You deserve it. We all do. God bless you and keep you in His loving care. Your sister, Mary.”
“Kitty,” however, thinks I’ve gone around the bend: “You need to run, not walk, to some counseling…Please, get yourself some help and I ask everyone on this site to pray for you so you can enjoy life to the fullest.”
I do get some reinforcement from “Gerri,” who has been through all the treatments and now finds herself in terminal condition: “I am also angry. All the money that is raised, all the smiling faces of survivors who make it sound like it is OK to have breast cancer. IT IS NOT OK!” But Gerri’s message, like the others on the message board, is posted under the mocking heading “What does it mean to be a breast-cancer survivor?”
“Culture” is too we
ak a word to describe all this. What has grown up around breast cancer in just the last fifteen years more nearly resembles a cult—or, given that it numbers more than two million women, their families, and friends—perhaps we should say a full-fledged religion. The products—teddy bears, pink-ribbon brooches, and so forth—serve as amulets and talismans, comforting the sufferer and providing visible evidence of faith. The personal narratives serve as testimonials and follow the same general arc as the confessional autobiographies required of seventeenth-century Puritans: First there is a crisis, often involving a sudden apprehension of mortality (the diagnosis or, in the old Puritan case, a stern word from on high); then comes a prolonged ordeal (the treatment or, in the religious case, internal struggle with the Devil); and finally, the blessed certainty of salvation, or its breast-cancer equivalent, survivorhood. And like most recognized religions, breast cancer has its great epideictic events, its pilgrimages and mass gatherings where the faithful convene and draw strength from their numbers. These are the annual races for a cure, attracting a total of about a million people at more than eighty sites—70,000 of them at the largest event, in Washington, DC, which in recent years has been attended by Dan and Marilyn Quayle and Al and Tipper Gore. Everything comes together at the races: Celebrities and corporate sponsors are showcased; products are hawked; talents, like those of the “Swinging, Singing Survivors” from Syracuse, New York, are displayed. It is at the races, too, that the elect confirm their special status. As one participant wrote in the Washington Post:
I have taken my “battle scarred” breasts to the Mall, donned the pink shirt, visor, pink shoelaces, etc. and walked proudly among my fellow veterans of the breast cancer war. In 1995, at the age of 44, I was diagnosed and treated for Stage II breast cancer. The experience continues to redefine my life.
Feminist breast-cancer activists, who in the early nineties were organizing their own mass outdoor events—demonstrations, not races—to demand increased federal funding for research, tend to keep their distance from these huge, corporate-sponsored, pink gatherings. Ellen Leopold, for example—a member of the Women’s Community Cancer Project in Cambridge and author of A Darker Ribbon: Breast Cancer, Women, and Their Doctors in the Twentieth Century—has criticized the races as an inefficient way of raising money. She points out that the Avon Breast Cancer Crusade, which sponsors three-day, sixty-mile walks, spends more than a third of the money raised on overhead and advertising, and Komen may similarly fritter away up to 25 percent of its gross. At least one corporate-charity insider agrees. “It would be much easier and more productive,” says Rob Wilson, an organizer of charitable races for corporate clients, “if people, instead of running or riding, would write out a check to the charity.”
To true believers, such criticisms miss the point, which is always, ultimately, “awareness.” Whatever you do to publicize the disease—wear a pink ribbon, buy a teddy bear, attend a race—reminds other women to come forward for their mammograms. Hence, too, they would argue, the cult of the “survivor”: If women neglect their annual screenings, it must be because they are afraid that a diagnosis amounts to a death sentence. Beaming survivors, proudly displaying their athletic prowess, are the best possible advertisement for routine screening mammograms, early detection, and the ensuing round of treatments. Yes, miscellaneous businesses—from tiny distributors of breast-cancer wind chimes and note cards to major corporations seeking a woman-friendly image—benefit in the process, not to mention the breast-cancer industry itself, the estimated $12–16 billion-a-year business in surgery, “breast health centers,” chemotherapy “infusion suites,” radiation treatment centers, mammograms, and drugs ranging from anti-emetics (to help you survive the nausea of chemotherapy) to tamoxifen (the hormonal treatment for women with estrogen-sensitive tumors). But what’s to complain about? Seen through pink-tinted lenses, the entire breast-cancer enterprise—from grassroots support groups and websites to the corporate providers of therapies and sponsors of races—looks like a beautiful example of synergy at work: Cult activities, paraphernalia, and testimonies encourage women to undergo the diagnostic procedures, and since a fraction of these diagnoses will be positive, this means more members for the cult as well as more customers for the corporations, both those that provide medical products and services and those that offer charitable sponsorships.
But this view of a life-giving synergy is only as sound as the science of current detection and treatment modalities, and, tragically, that science is fraught with doubt, dissension, and what sometimes looks very much like denial. Routine screening mammograms, for example, are the major goal of “awareness,” as when Rosie O’Donnell exhorts us to go out and “get squished.” But not all breast-cancer experts are as enthusiastic. At best the evidence for the salutary effects of routine mammograms—as opposed to breast self-examination—is equivocal, with many respectable large-scale studies showing a vanishingly small impact on overall breast-cancer mortality. For one thing, there are an estimated two to four false positives for every cancer detected, leading thousands of healthy women to go through unnecessary biopsies and anxiety. And even if mammograms were 100 percent accurate, the admirable goal of “early” detection is more elusive than the current breast-cancer dogma admits. A small tumor, detectable only by mammogram, is not necessarily young and innocuous; if it has not spread to the lymph nodes, which is the only form of spreading detected in the common surgical procedure of lymph-node dissection, it may have already moved on to colonize other organs via the bloodstream. David Plotkin, director of the Memorial Cancer Research Foundation of Southern California, concludes that the benefits of routine mammography “are not well established; if they do exist, they are not as great as many women hope.” Alan Spievack, a surgeon recently retired from the Harvard Medical School, goes further, concluding from his analysis of dozens of studies that routine screening mammography is, in the words of famous British surgeon Dr. Michael Baum, “one of the greatest deceptions perpetrated on the women of the Western world.”
Even if foolproof methods for early detection existed,2 they would, at the present time, serve only as portals to treatments offering dubious protection and considerable collateral damage. Some women diagnosed with breast cancer will live long enough to die of something else, and some of these lucky ones will indeed owe their longevity to a combination of surgery, chemotherapy, radiation, and/or anti-estrogen drugs such as tamoxifen. Others, though, would have lived untreated or with surgical excision alone, either because their cancers were slow-growing or because their bodies’ own defenses were successful. Still others will die of the disease no matter what heroic, cell-destroying therapies are applied. The trouble is, we do not have the means to distinguish between these three groups. So for many of the thousands of women who are diagnosed each year, Plotkin notes, “The sole effect of early detection has been to stretch out the time in which the woman bears the knowledge of her condition.” These women do not live longer than they might have without any medical intervention, but more of the time they do live is overshadowed with the threat of death and wasted in debilitating treatments.
To the extent that current methods of detection and treatment fail or fall short, America’s breast-cancer cult can be judged as an outbreak of mass delusion, celebrating survivorhood by downplaying mortality and promoting obedience to medical protocols known to have limited efficacy. And although we may imagine ourselves to be well past the era of patriarchal medicine, obedience is the message behind the infantilizing theme in breast-cancer culture, as represented by the teddy bears, the crayons, and the prevailing pinkness. You are encouraged to regress to a little-girl state, to suspend critical judgment, and to accept whatever measures the doctors, as parent surrogates, choose to impose.
Worse, by ignoring or underemphasizing the vexing issue of environmental causes, the breast-cancer cult turns women into dupes of what could be called the Cancer Industrial Complex: the multinational corporate enterprise that with one hand doles out carcinogens
and disease and, with the other, offers expensive, semitoxic pharmaceutical treatments. Breast Cancer Awareness Month, for example, is sponsored by AstraZeneca (the manufacturer of tamoxifen), which, until a corporate reorganization in 2000, was a leading producer of pesticides, including acetochlor, classified by the EPA as a “probable human carcinogen.” This particularly nasty conjuncture of interests led the environmentally oriented Cancer Prevention Coalition (CPC) to condemn Breast Cancer Awareness Month as “a public relations invention by a major polluter which puts women in the position of being unwitting allies of the very people who make them sick.” Although AstraZeneca no longer manufactures pesticides, CPC has continued to criticize the breast-cancer crusade—and the American Cancer Society—for its unquestioning faith in screening mammograms and careful avoidance of environmental issues. In a June 12, 2001, press release, CPC chairman Samuel S. Epstein, MD, and the well-known physician activist Quentin Young castigated the American Cancer Society for its “longstanding track record of indifference and even hostility to cancer prevention…Recent examples include issuing a joint statement with the Chlorine Institute justifying the continued global use of persistent organochlorine pesticides, and also supporting the industry in trivializing dietary pesticide residues as avoidable risks of childhood cancer. ACS policies are further exemplified by allocating under 0.1 percent of its $700 million annual budget to environmental and occupational causes of cancer.”
In the harshest judgment, the breast-cancer cult serves as an accomplice in global poisoning—normalizing cancer, prettying it up, even presenting it, perversely, as a positive and enviable experience.
When, my three months of chemotherapy completed, the oncology nurse calls to congratulate me on my “excellent bloodwork results,” I modestly demur. I didn’t do anything, I tell her, anything but endure—marking the days off on the calendar, living on Protein Revolution canned vanilla health shakes, escaping into novels and work. Courtesy restrains me from mentioning the fact that the tumor markers she’s tested for have little prognostic value, that there’s no way to know how many rebel cells survived chemotherapy and may be carving out new colonies right now. She insists I should be proud; I’m a survivor now and entitled to recognition at the Relay for Life being held that very evening in town.
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