by Barbara Ehrenreich
Harper's Magazine, November 2001
I was thinking of it as one of those drive-by mammograms, one stop in a series of mundane missions including post office, supermarket, and gym, but I began to lose my nerve in the changing room, and not only because of the kinky necessity of baring my breasts and affixing tiny Xray opaque stars to the tip of each nipple. I had been in this place only four months earlier, but that visit was just part of the routine cancer surveillance all good citizens of HMOs or health plans are expected to submit to once they reach the age of fifty, and I hadn't really been paying attention then. The results of that earlier session had aroused some "concern" on the part of the radiologist and her confederate, the gynecologist, so I am back now in the role of a suspect, eager to clear my name, alert to medical missteps and unfair allegations. But the changing room, really just a closet off the stark windowless space that houses the mammogram machine, contains something far worse, I notice for the first time now an assumption about who I am, where I am going, and what I will need when I get there. Almost all of the eye-level space has been filled with photocopied bits of cuteness and sentimentality: pink ribbons, a cartoon about a woman with iatrogenically flattened breasts, an "Ode to a Mammogram," a list of the "Top Ten Things Only Women Understand" ("Fat Clothes" and "Eyelash Curlers" among them), and, inescapably, right next to the door, the poem "I Said a Prayer for You Today," illustrated with pink roses.
It goes on and on, this mother of all mammograms, cutting into gym time, dinnertime, and lifetime generally. Sometimes the machine doesn't work, and I get squished into position to no purpose at all. More often, the X ray is successful but apparently alarming to the invisible radiologist, off in some remote office, who calls the shots and never has the courtesy to show her face with an apology or an explanation. I try pleading with the technician: I have no known risk factors, no breast cancer in the family, had my babies relatively young and nursed them both. I eat right, drink sparingly, work out, and doesn't that count for something'! But she just gets this tight little professional smile on her face, either out of guilt for the torture she's inflicting or because she already knows something that I am going to be sorry to find out for myself. For an hour and a half the procedure is repeated: the squishing, the snapshot, the technician bustling off to consult the radiologist and returning with a demand for new angles and more definitive images. In the intervals while she's off with the doctor I read the New York Times right down to the personally irrelevant sections like theater and real estate, eschewing the stack of women's magazines provided for me, much as I ordinarily enjoy a quick read about sweatproof eyeliners and "fabulous sex tonight," because I have picked up this warning vibe in the changing room, which, in my increasingly anxious state, translates into: femininity is death. Finally there is nothing left to read but one of the free local weekly newspapers, where I find, buried deep in the classifieds, something even more unsettling than the growing prospect of major disease a classified ad for a "breast cancer teddy bear" with a pink ribbon stitched to its chest.
Yes, atheists pray in their foxholes -- in this case, with a yearning new to me and sharp as lust, for a clean and honorable death by shark bite, lightning strike, sniper fire, car crash. Let me be hacked to death by a madman, is my silent supplication -- anything but suffocation by the pink sticky sentiment embodied in that bear and oozing from the walls of the changing room.
My official induction into breast cancer comes about ten days later with the biopsy, which, for reasons I cannot ferret out of the surgeon, has to be a surgical one, performed on an outpatient basis but under general anesthesia, from which I awake to find him standing perpendicular to me, at the far end of the gurney, down near my feet, stating gravely, "Unfortunately, there is a cancer." It takes me all the rest of that drug-addled day to decide that the most heinous thing about that sentence is not the presence of cancer but the absence of me -- for I, Barbara, do not enter into it even as a location, a geographical reference point. Where I once was -- not a commanding presence perhaps but nonetheless a standard assemblage of flesh and words and gesture -- "there is a cancer." I have been replaced by it, is the surgeon's implication. This is what I am now, medically speaking.
In my last act of dignified self-assertion, I request to see the pathology slides myself. This is not difficult to arrange in our small-town hospital, where the pathologist turns out to be a friend of a friend, and my rusty Ph.D. in cell biology (Rockefeller University, 1968) probably helps. He's a jolly fellow, the pathologist, who calls me "hon" and sits me down at one end of the dual-head microscope while he mans the other and moves a pointer through the field. These are the cancer cells, he says, showing up blue because of their overactive DNA. Most of them are arranged in staid semicircular arrays, like suburban houses squeezed into a cul-de-sac, but I also see what I know enough to know I do not want to see: the characteristic "Indian files" of cells on the march. The "enemy," I am supposed to think -- an image to save up for future exercises in "visualization" of their violent deaths at the hands of the body's killer cells, the lymphocytes and macrophages. But I am impressed, against all rational self-interest, by the energy of these cellular conga lines, their determination to move on out from the backwater of the breast to colonize lymph nodes, bone marrow, lungs, and brain. These are, after all, the fanatics of Barbaraness, the rebel cells that have realized that the genome they carry, the genetic essence of me, has no further chance of normal reproduction in the postmenopausal body we share, so why not just start multiplying like bunnies and hope for a chance to break out?
It has happened, after all; some genomes have achieved immortality through cancer. When I was a graduate student, I once asked about the strain of tissue-culture cells labeled "HeLa" in the heavy-doored room maintained at body temperature. "HeLa," it turns out, refers to one Henrietta Lacks, whose tumor was the progenitor of all HeLa cells. She died; they live, and will go on living until someone gets tired of them or forgets to change their tissue-culture medium and leaves them to starve. Maybe this is what my rebel cells have in mind, and I try beaming them a solemn warning: The chances of your surviving me in tissue culture are nil. Keep up this selfish rampage and you go down, every last one of you, along with the entire Barbara enterprise. But what kind of a role model am I, or are multicellular human organisms generally, for putting the common good above mad anarchistic individual ambition? There is a reason, it occurs to me, why cancer is our metaphor for so many runaway social processes, like corruption and "moral decay": we are no less out of control ourselves.
After the visit to the pathologist, my biological curiosity drops to a lifetime nadir. I know women who followed up their diagnoses with weeks or months of self-study, mastering their options, interviewing doctor after doctor, assessing the damage to be expected from the available treatments. But I can tell from a few hours of investigation that the career of a breast-cancer patient has been pretty well mapped out in advance for me: You may get to negotiate the choice between lumpectomy and mastectomy, but lumpectomy is commonly followed by weeks of radiation, and in either case if the lymph nodes turn out, upon dissection, to be invaded -- or "involved," as it's less threateningly put -- you're doomed to chemotherapy, meaning baldness, nausea, mouth sores, immunosuppression, and possible anemia. These interventions do not constitute a "cure" or anything close, which is why the death rate from breast cancer has changed very little since the 1930s, when mastectomy was the only treatment available. Chemotherapy, which became a routine part of breast-cancer treatment in the eighties, does not confer anywhere near as decisive an advantage as patients are often led to believe, especially in postmenopausal women like myself -- a two or three percentage point difference in ten year survival rates,1 according to America's best-known breast-cancer surgeon, Dr. Susan Love. I know these bleak facts, or sort of know them, but in the fog of anesthesia that hangs over those first few weeks, I seem to lose my capacity for self-defense. The pressure is 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'm strong enough to withstand chemotherapy -- all these blur the line between selfhood and thing-hood anyway, organic and inorganic, me and it. As my cancer career unfolds, I will, 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 fall 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 last spring 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 retarded Siamese twin dragging along behind me, an 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 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, Estee Lauder, Ralph Lauren, Lee Jeans, Saks Fifth Avenue, JC Penney, 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 Assets 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 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 Estee Lauder Perfumed Body CrŤme, 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 sketch book," 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 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 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 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 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 message boards realize that when post-mastectomy 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 Third World sources of the produce we eat), and the industrial runoff in our ground water. 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 one 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 life style 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-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 "flercely" -- 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, A.A.-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 for 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 Jam 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.
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 smoothes 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-middleclass 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 recreate 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 breastcancer 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 authoritative 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 "blocs" 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 towards 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 o.k. to have breast cancer. IT IS NOT O.K.!" 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 weak 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 stem 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, D.C., 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, 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 $12Ė16 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 the one hand doles out carcinogens and disease and, with the other, offers expensive, semi-toxic 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, M.D., 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 blood work 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.
So I show up at the middle-school track where the relay's going on just in time for the Survivors' March: about 100 people, including a few men, since the funds raised will go to cancer research in general, are marching around the track eight to twelve abreast while a loudspeaker announces their names and survival times and a thin line of observers, mostly people staffing the raffle and food booths, applauds. It could be almost any kind of festivity, except for the distinctive stacks of cellophane-wrapped pink Hope Bears for sale in some of the booths. I cannot help but like the kinky small-town Gemdtlichkeit of the event, especially when the audio system strikes up that universal anthem of solidarity, "We Are Family," and a few people of various ages start twisting to the music on the gerry-rigged stage. But the money raised is going far away, to the American Cancer Society, which will not be asking us for our advice on how to spend it.
I approach a woman I know from other settings, one of our local intellectuals, as it happens, decked out here in a pink-and-yellow survivor T-shirt and with an American Cancer Society "survivor medal" suspended on a purple ribbon around her neck. 'When do you date your survivorship from?'
I ask her, since the announced time, five and a half years, seems longer than I recall. "From diagnosis or the completion of your treatments?" The question seems to annoy or confuse her, so I do not press on to what I really want to ask: At what point, in a downwardly sloping breast-cancer career, does one put aside one's survivor regalia and admit to being in fact a die-er? For the dead are with us even here, though in much diminished form. A series of paper bags, each about the right size for a junior burger and fries, lines the track. On them are the names of the dead, and inside each is a candle that will be lit later, after dark, when the actual relay race begins.
My friend introduces me to a knot of other women in survivor gear, breast-cancer victims all, I learn, though of course I would not use the V-word here. "Does anyone else have trouble with the term 'survivor'?' I ask, and, surprisingly, two or three speak up. It could be "unlucky," one tells me; it "tempts fate," says another, shuddering slightly. After all, the cancer can recur at any time, either in the breast or in some more strategic site. No one brings up my own objection to the term, though: that the mindless triumphalism of "survivorhood" denigrates the dead and the dying. Did we who live "fight" harder than those who've died? Can we claim to be "braver," better, people than the dead? And why is there no room in this cult for some gracious acceptance of death, when the time comes, which it surely will, through cancer or some other misfortune?
No, this is not my sisterhood. For me at least, breast cancer will never be a source of identity or pride. As my dying correspondent Gerri wrote: "IT IS NOT O.K.!" What it is, along with cancer generally or any slow and painful way of dying, is an abomination, and, to the extent that it's manmade, also a crime. This is the one great truth that I bring out of the breast-cancer experience, which did not, I can now report, make me prettier or stronger, more feminine or spiritual -- only more deeply angry. What sustained me through the "treatments" is a purifying rage, a resolve, framed in the sleepless nights of chemotherapy, to see the last polluter, along with, say, the last smug health insurance operative, strangled with the last pink ribbon. Cancer or no cancer, I will not live that long of course. But I know this much right now for sure: I will not go into that last good night with a teddy bear tucked under my arm.
1 In the United States, one in eight women will be diagnosed with breast cancer at some point. The chances of her surviving for five years ore 86.8 percent. For a black woman this falls to 72 percent; and for a woman of any race whose cancer has spread to the lymph nodes, to 77.7 percent.
2 Some improved prognostic tools, involving measuring a tumor's growth rate and the extent to which it is supplied with blood vessels, are being developed but are not yet in use.
Breast Cancer Action (www.bcaction.org)
Breast Cancer Action carries the voices of people affected by breast cancer to inspire and compel the changes necessary to end the breast cancer epidemic.
Think Before You Pinkô, a project of Breast Cancer Action, launched in 2002 in response to the growing concern about the number of pink ribbon products on the market. The campaign calls for more transparency and accountability by companies that take part in breast cancer fundraising, and encourages consumers to ask critical questions about pink ribbon promotions.