ONE
Smile or Die:
The Bright Side of Cancer
The first attempt to recruit me into positive thinking occurred at what has been, so far, the low point of my life. If you had asked me, just before the diagnosis of cancer, whether I was an optimist or a pessimist, I would have been hard-pressed to answer. But on health-related matters, as it turned out, I was optimistic to the point of delusion. Nothing had so far come along that could not be controlled by diet, stretching, Advil, or, at worst, a prescription. So I was not at all alarmed when a mammogram—undertaken as 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—aroused some “concern” on the part of the gynecologist. How could I have breast cancer? I had no known risk factors, there was no breast cancer in the family, I’d had my babies relatively young and nursed them both. I ate right, drank sparingly, worked out, and, besides, my breasts were so small that I figured a lump or two would probably improve my figure. When the gynecologist suggested a follow-up mammogram four months later, I agreed only to placate her.
I thought 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 X-ray opaque stars to the tip of each nipple. The changing room, really just a closet off the stark, windowless space that housed the mammogram machine, contained something far worse, I noticed for the first time—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 had 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 went on and on, this mother of all mammograms, cutting into gym time, dinnertime, and lifetime generally. Sometimes the machine didn’t work, and I got squished into position to no purpose at all. More often, the X-ray was successful but apparently alarming to the invisible radiologist, off in some remote office, who called the shots and never had the courtesy to show her face with an apology or an explanation. I tried pleading with the technician to speed up the process, but she just got this tight little professional smile on her face, either out of guilt for the torture she was inflicting or because she already knew something that I was going to be sorry to find out for myself. For an hour and a half the procedure was 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 was 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 had picked up this warning vibe in the changing room, which, in my increasingly anxious state, translated into: femininity is death. Finally there was nothing left to read but one of the free local weekly newspapers, where I found, 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, was my silent supplication—anything but suffocation by the pink sticky sentiment embodied in that bear and oozing from the walls of the changing room. I didn’t mind dying, but the idea that I should do so while clutching a teddy and with a sweet little smile on my face—well, no amount of philosophy had prepared me for that.
The result of the mammogram, conveyed to me by phone a day later, was that I would need a biopsy, and, for some reason, a messy, surgical one with total anesthesia. Still, I was not overly perturbed and faced the biopsy like a falsely accused witch confronting a trial by dunking: at least I would clear my name. I called my children to inform them of the upcoming surgery and assured them that the great majority of lumps detected by mammogram—80 percent, the radiology technician had told me—are benign. If anything was sick, it was that creaky old mammogram machine.
My official induction into breast cancer came about ten days later with the biopsy, from which I awoke to find the surgeon standing perpendicular to me, at the far end of the gurney, down near my feet, stating gravely, “Unfortunately, there is a cancer.” It took me all the rest of that drug-addled day to decide that the most heinous thing about that sentence was not the presence of cancer but the absence of me—for I, Barbara, did 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 had been replaced by it, was the surgeon’s implication. This was what I was now, medically speaking.
In my last act of dignified self-assertion, I requested to see the pathology slides myself. This was not difficult to arrange in our small-town hospital, where the pathologist turned out to be a friend of a friend, and my rusty Ph.D. in cell biology (Rockefeller University, 1968) probably helped. He was a jolly fellow, the pathologist, who called me “hon” and sat me down at one end of the dual-head microscope while he manned the other and moved a pointer through the field. These are the cancer cells, he said, showing up blue because of their overactive DNA. Most of them were arranged in staid semicircular arrays, like suburban houses squeezed into cul-de-sacs, but I also saw what I knew enough to know I did not want to see: the characteristic “Indian files” of cells on the march. The “enemy,” I was 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 was 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 Barbara-ness, the rebel cells that have realized that the genome they carry, the genetic essence of me in whatever deranged form, 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?
After the visit to the pathologist, my biological curiosity dropped 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 could tell from a few hours of investigation that the career of a breast cancer patient had been pretty well mapped out in advance: 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 months of chemotherapy, an intervention that is on a par with using a sledge hammer to swat mosquitoes. Chemotherapy agents damage and kill not just cancer cells but any normal body cells that happen to be dividing, such as those in the skin, hair follicles, stomach lining, and bone marrow (which is the source of all blood cells, including immune cells). The results are baldness, nausea, mouth sores, immunosuppression, and, in many cases, anemia.
These interventions do not constitute a “cure” or anything close, which is why the death rate from breast cancer had changed very little between the 1930s, when mastectomy was the only treatment available, and 2000, when I received my diagnosis. 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. It’s most helpful for younger, premenopausal women, who can gain a 7 to 11 percentage point increase in ten-year survival rates, but most breast cancer victims are older, postmenopausal women like myself, for whom chemotherapy adds only a 2 or 3 percentage point difference, according to America’s best-known breast cancer surgeon, Susan Love. 1 So yes, it might add a few months to your life, but it also condemns you to many months of low-level sickness.
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? * 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.” 2
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.” 3
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.” 4 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.
Writing in 2007, New York Times health columnist Jane Brody faithfully reflected the near universal bright-siding of the disease. 5 She gave a nod to the downside of breast cancer and cancer generally: “It can cause considerable physical and emotional pain and lasting disfigurement. It may even end in death.” But for the most part her column was a veritable ode to the uplifting effects of cancer, and especially breast cancer. She quoted bike racer and testicular cancer survivor Lance Armstrong saying, “Cancer was the best thing that ever happened to me,” and cited a woman asserting that “breast cancer has given me a new life. Breast cancer was something I needed to experience to open my eyes to the joy of living. I now see more of the world than I was choosing to see before I had cancer. . . . Breast cancer has taught me to love in the purest sense.” Betty Rollin, one of the first women to go public with her disease, was enlisted to testify that she has “realized that the source of my happiness was, of all things, cancer—that cancer had everything to do with how good the good parts of my life were.”
In the most extreme characterization, breast cancer is not a problem at all, not even an annoyance—it is a “gift,” deserving of the most heartfelt gratitude. One survivor turned author credits it with revelatory powers, writing in her book The Gift of Cancer: A Call to Awakening that “cancer is your ticket to your real life. Cancer is your passport to the life you were truly meant to live.” And if that is not enough to make you want to go out and get an injection of live cancer cells, she insists, “Cancer will lead you to God. Let me say that again. Cancer is your connection to the Divine.” 6
The effect of all this positive thinking 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 grandmotherhood. 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 that I found so useful bears an implicit acceptance of the disease and the current clumsy and barbarous approaches to its treatment: you can get so busy comparing attractive head scarves that you forget to question whether chemotherapy is really going to be effective in your case. 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 and 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 make over 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 fifty thousand 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—in which literary critic Eve Kosofsky Sedgwick served as a columnist—tends to favor the “natural” look. Here, mastectomy scars can be “sexy” and baldness something to celebrate. A cover story featured 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 woman decorated her scalp with temporary tattoos of peace signs, panthers, and frogs; another expressed herself with a shocking purple wig; a third reported that unadorned baldness made 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 breast cancer motif. But everyone agrees that breast cancer is a chance for creative self-transformation—a make over opportunity, in fact.
In the seamless world of breast cancer culture, where one Web site links to another—from personal narratives and grassroots endeavors to the glitzy level of corporate sponsors and celebrity spokespeople—cheerfulness is required, 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 “blues” 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.” 7
As an experiment, I posted a statement on the [http://Komen.org] Komen.org message board, under the subject line “Angry,” briefly listing my complaints about the debilitating effects of chemotherapy, recalcitrant insurance companies, environmental carcinogens, and, most daringly, “sappy pink ribbons.” I received a few words of encouragement in my fight with the insurance company, which had taken the position that my biopsy was a kind of optional indulgence, but mostly a chorus of rebukes. “Suzy” wrote to tell me, “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” was 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, thought I’d 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.” The only person who offered me any reinforcement was “Gerri,” who had been through all the treatments and now found herself in terminal condition, with only a few months of life remaining: “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, was posted under the inadvertently mocking heading “What does it mean to be a breast cancer survivor?”
The “Scientific” Argument for Cheer
There was, I learned, an urgent medical reason to embrace cancer with a smile: a “positive attitude” is supposedly essential to recovery. During the months when I was undergoing chemotherapy, I encountered this assertion over and over—on Web sites, in books, from oncology nurses and fellow sufferers. Eight years later, it remains almost axiomatic, within the breast cancer culture, that survival hinges on “attitude.” One study found 60 percent of women who had been treated for the disease attributing their continued survival to a “positive attitude.” 8 In articles and on their Web sites, individuals routinely take pride in this supposedly lifesaving mental state. “The key is all about having a positive attitude, which I’ve tried to have since the beginning,” a woman named Sherry Young says in an article entitled “Positive Attitude Helped Woman Beat Cancer.” 9
“Experts” of various sorts offer a plausible-sounding explanation for the salubrious properties of cheerfulness. A recent e-zine article entitled “Breast Cancer Prevention Tips”—and the notion of breast cancer “prevention” should itself set off alarms, since there is no known means of prevention—for example, advises that:
A simple positive and optimistic attitude has been shown to reduce the risk of cancer. This will sound amazing to many people; however, it will suffice to explain that several medical studies have demonstrated the link between a positive attitude and an improved immune system. Laughter and humor has [sic] been shown to enhance the body’s immunity and prevents against cancer and other diseases. You must have heard the slogan “happy people don’t fall sick.” 10
No wonder my “angry” post was greeted with so much dismay on the Komen site: my respondents no doubt believed that a positive attitude boosts the immune system, empowering it to battle cancer more effectively.
You’ve probably read that assertion so often, in one form or another, that it glides by without a moment’s thought about what the immune system is, how it might be affected by emotions, and what, if anything, it could do to fight cancer. The business of the immune system is to defend the body against foreign intruders, such as microbes, and it does so with a huge onslaught of cells and whole cascades of different molecular weapons. The complexity, and diversity, of the mobilization is overwhelming: Whole tribes and subtribes of cells assemble at the site of infection, each with its own form of weaponry, resembling one of the ramshackle armies in the movie The Chronicles of Narnia. Some of these warrior cells toss a bucket of toxins at the invader and then move on; others are there to nourish their comrades with chemical spritzers. The body’s lead warriors, the macrophages, close in on their prey, envelop it in their own “flesh,” and digest it. As it happens, macrophages were the topic of my Ph.D. thesis; they are large, mobile, amoebalike creatures capable of living for months or years. When the battle is over, they pass on information about the intruder to other cells, which will produce antibodies to speed up the body’s defenses in the next encounter. They will also eat not only the vanquished intruders but their own dead comrades-in-arms.
For all its dizzying complexity—which has kept other graduate students toiling away “at the bench” for decades—the immune system is hardly foolproof. Some invaders, like the tuberculosis bacillus, outwit it by penetrating the body’s tissue cells and setting up shop inside them, where the bacilli cannot be detected by immune cells. Most diabolically, the HIV virus selectively attacks certain immune cells, rendering the body almost defenseless. And sometimes the immune system perversely turns against the body’s own tissues, causing such “autoimmune” diseases as lupus and rheumatoid arthritis and possibly some forms of heart disease. It may not be perfect, this seemingly anarchic system of cellular defense, but it is what has evolved so far out of a multimillion-year arms race with our microbial enemies.
The link between the immune system, cancer, and the emotions was cobbled together somewhat imaginatively in the 1970s. It had been known for some time that extreme stress could debilitate certain aspects of the immune system. Torture a lab animal long enough, as the famous stress investigator Hans Selye did in the 1930s, and it becomes less healthy and resistant to disease. It was apparently a short leap, for many, to the conclusion that positive feelings might be the opposite of stress—capable of boosting the immune system and providing the key to health, whether the threat is a microbe or a tumor.
One of the early best-selling assertions of this notion was Getting Well Again, by O. Carl Simonton, an oncologist; Stephanie Matthews-Simonton, identified in the book as a “motivational counselor”; and psychologist James L. Creighton. So confident were they of the immune system’s ability to defeat cancer that they believed “a cancer does not require just the presence of abnormal cells, it also requires a suppression of the body’s normal defenses.” 11 What could suppress them? Stress. While the Simontons urged cancer patients to obediently comply with the prescribed treatments, they suggested that a kind of attitude adjustment was equally important. Stress had to be overcome, positive beliefs and mental imagery acquired.
The Simontons’ book was followed in 1986 by surgeon Bernie Siegel’s even more exuberant Love, Medicine, and Miracles, offering the view that “a vigorous immune system can overcome cancer if it is not interfered with, and emotional growth toward greater self-acceptance and fulfillment helps keep the immune system strong.” 12 Hence cancer was indeed a blessing, since it could force the victim into adopting a more positive and loving view of the world.
But where were the studies showing the healing effect of a positive attitude? Could they be duplicated? One of the skeptics, Stanford psychiatrist David Spiegel, told me he set out in 1989 to refute the popular dogma that attitude could overcome cancer. “I was so sick of hearing Bernie Siegel saying that you got cancer because you needed it,” he told me in an interview. But to his surprise, Spiegel’s study showed that breast cancer patients in support groups—who presumably were in a better frame of mind than those facing the disease on their own—lived longer than those in the control group. Spiegel promptly interrupted the study, deciding that no one should be deprived of the benefits provided by a support group. The dogma was affirmed and remained so at the time I was diagnosed.
You can see its appeal. First, the idea of a link between subjective feelings and the disease gave the breast cancer patient something to do. Instead of waiting passively for the treatments to kick in, she had her own work to do—on herself. She had to monitor her moods and mobilize psychic energy for the war at the cellular level. In the Simontons’ scheme, she was to devote part of each day to drawing cartoonish sketches of battles among buglike cells. If the cancer cells were not depicted as “very weak [and] confused” and the body’s immune cells were not portrayed as “strong and aggressive,” the patient could be courting death, and had more work to do. 13 At the same time, the dogma created expanded opportunities in the cancer research and treatment industry: not only surgeons and oncologists were needed but behavioral scientists, therapists, motivational counselors, and people willing to write exhortatory self-help books.
The dogma, however, did not survive further research. In the nineties, studies began to roll in refuting Spiegel’s 1989 work on the curative value of support groups. The amazing survival rates of women in Spiegel’s first study turned out to be a fluke. Then, in the May 2007 issue of Psychological Bulletin, James Coyne and two coauthors published the results of a systematic review of all the literature on the supposed effects of psychotherapy on cancer. The idea was that psychotherapy, like a support group, should help the patient improve her mood and decrease her level of stress. But Coyne and his coauthors found the existing literature full of “endemic problems.” 14 In fact, there seemed to be no positive effect of therapy at all. A few months later, a team led by David Spiegel himself reported in the journal Cancer that support groups conferred no survival advantage after all, effectively contradicting his earlier finding. Psychotherapy and support groups might improve one’s mood, but they did nothing to overcome cancer. “If cancer patients want psychotherapy or to be in a support group, they should be given the opportunity to do so,” Coyne said in a summary of his research. “There can be lots of emotional and social benefits. But they should not seek such experiences solely on the expectation that they are extending their lives.” 15
When I asked Coyne in early 2009 whether there is a continuing scientific bias in favor of a link between emotions and cancer survival, he said:
To borrow a term used to describe the buildup to the Iraq war, I would say there’s a kind of “incestuous amplification.” It’s very exciting—the idea that the mind can affect the body—and it’s a way for the behavioral scientists to ride the train. There’s a lot at stake here in grants for cancer-related research, and the behavioral scientists are clinging to it. What else do they have to contribute [to the fight against cancer]? Research on how to get people to use sunscreen? That’s not sexy.
He feels that the bias is especially strong in the United States, where skeptics tend to be marginalized. “It’s much easier for me to get speaking gigs in Europe,” he told me.
What about the heroic battles between immune cells and cancer cells that patients are encouraged to visualize? In 1970, the famed Australian medical researcher McFarlane Burnet had proposed that the immune system is engaged in constant “surveillance” for cancer cells, which, supposedly, it would destroy upon detection. Presumably, the immune system was engaged in busily destroying cancer cells—until the day came when it was too exhausted (for example, by stress) to eliminate the renegades. There was at least one a priori problem with this hypothesis: unlike microbes, cancer cells are not “foreign”; they are ordinary tissue cells that have mutated and are not necessarily recognizable as enemy cells. As a recent editorial in the Journal of Clinical Oncology put it: “What we must first remember is that the immune system is designed to detect foreign invaders, and avoid our own cells. With few exceptions, the immune system does not appear to recognize cancers within an individual as foreign, because they are actually part of the self.” 16
More to the point, there is no consistent evidence that the immune system fights cancers, with the exception of those cancers caused by viruses, which may be more truly “foreign.” People whose immune systems have been depleted by HIV or animals rendered immunodeficient are not especially susceptible to cancer, as the “immune surveillance” theory would predict. Nor would it make much sense to treat cancer with chemotherapy, which suppresses the immune system, if the latter were truly crucial to fighting the disease. Furthermore, no one has found a way to cure cancer by boosting the immune system with chemical or biological agents. Yes, immune cells such as macrophages can often be found clustering at tumor sites, but not always to do anything useful.
To my intense shock and dismay as a former cellular immunologist, recent research shows that macrophages may even go over to the other side. Instead of killing the cancer cells, they start releasing growth factors and performing other tasks that actually encourage tumor growth. Mice can be bred to be highly susceptible to breast cancer, but their incipient tumors do not become malignant without the assistance of macrophages arriving at the site. 17 A 2007 article in Scientific American concluded that at best “the immune system functions as a double-edged sword. . . . Sometimes it promotes cancer; other times it hinders disease.” 18 Two years later, researchers discovered that another type of immune cell, lymphocytes, also promote the spread of breast cancer. 19 All those visualizations of courageous immune cells battling cancer cells missed the real drama—the seductions, the whispered deals, the betrayals.
Continuing in an anthropomorphic vein, there’s an interesting parallel between macrophages and cancer cells: compared with the body’s other cells, both are fiercely autonomous. Ordinary, “good” cells slavishly subject themselves to the demands of the dictatorship of the body: cardiac cells ceaselessly contract to keep the heart beating; intestinal lining cells selflessly pass on nutrients that they might have enjoyed eating themselves. But the cancer cells rip up their orders and start reproducing like independent organisms, while the macrophages are by nature free-ranging adventurers, perhaps the body’s equivalent of mercenaries. If nothing else, the existence of both is a reminder that the body is in some ways more like a loose, unstable federation of cells than the disciplined, well-integrated unit of our imaginings.
And, from an evolutionary perspective, why should the body possess a means of combating cancer, such as a form of “natural healing” that would kick in if only we get past our fears and negative thoughts? Cancer tends to strike older people who have passed the age of reproduction and hence are of little or no evolutionary significance. Our immune system evolved to fight bacteria and viruses and does a reasonably good job of saving the young from diseases like measles, whooping cough, and the flu. If you live long enough to get cancer, chances are you will have already accomplished your biological mission and produced a few children of your own.
It could be argued that positive thinking can’t hurt, that it might even be a blessing to the sorely afflicted. Who would begrudge the optimism of a dying person who clings to the hope of a last-minute remission? Or of a bald and nauseated chemotherapy patient who imagines that the cancer experience will end up giving her a more fulfilling life? Unable to actually help cure the disease, psychologists looked for ways to increase such positive feelings about cancer, which they termed “benefit finding.” 20 Scales of benefit finding have been devised and dozens of articles published on the therapeutic interventions that help produce it. If you can’t count on recovering, you should at least come to see your cancer as a positive experience, and this notion has been extended to other forms of cancer too. For example, prostate cancer researcher Stephen Strum has written: “You may not believe this, but prostate cancer is an opportunity. . . . [It] is a path, a model, a paradigm, of how you can interact to help yourself, and another. By doing so, you evolve to a much higher level of humanity.” 21
But rather than providing emotional sustenance, the sugar-coating of cancer can exact a dreadful cost. First, it requires the denial of understandable feelings of anger and fear, all of which must be buried under a cosmetic layer of cheer. This is a great convenience for health workers and even friends of the afflicted, who might prefer fake cheer to complaining, but it is not so easy on the afflicted. Two researchers on benefit finding report that the breast cancer patients they have worked with “have mentioned repeatedly that they view even well-intentioned efforts to encourage benefit-finding as insensitive and inept. They are almost always interpreted as an unwelcome attempt to minimize the unique burdens and challenges that need to be overcome.” 22 One 2004 study even found, in complete contradiction to the tenets of positive thinking, that women who perceive more benefits from their cancer “tend to face a poorer quality of life—including worse mental functioning—compared with women who do not perceive benefits from their diagnoses.” 23
Besides, it takes effort to maintain the upbeat demeanor expected by others—effort that can no longer be justified as a contribution to long-term survival. Consider the woman who wrote to Deepak Chopra that her breast cancer had spread to the bones and lungs:
Even though I follow the treatments, have come a long way in unburdening myself of toxic feelings, have forgiven everyone, changed my lifestyle to include meditation, prayer, proper diet, exercise, and supplements, the cancer keeps coming back.
Am I missing a lesson here that it keeps reoccurring? I am positive I am going to beat it, yet it does get harder with each diagnosis to keep a positive attitude.
She was working as hard as she could—meditating, praying, forgiving—but apparently not hard enough. Chopra’s response: “As far as I can tell, you are doing all the right things to recover. You just have to continue doing them until the cancer is gone for good. I know it is discouraging to make great progress only to have it come back again, but sometimes cancer is simply very pernicious and requires the utmost diligence and persistence to eventually overcome it.” 24
But others in the cancer care business have begun to speak out against what one has called “the tyranny of positive thinking.” When a 2004 study found no survival benefits for optimism among lung cancer patients, its lead author, Penelope Schofield, wrote: “We should question whether it is valuable to encourage optimism if it results in the patient concealing his or her distress in the misguided belief that this will afford survival benefits. . . . If a patient feels generally pessimistic . . . it is important to acknowledge these feelings as valid and acceptable.” 25
Whether repressed feelings are themselves harmful, as many psychologists claim, I’m not so sure, but without question there is a problem when positive thinking “fails” and the cancer spreads or eludes treatment. Then the patient can only blame herself: she is not being positive enough; possibly it was her negative attitude that brought on the disease in the first place. At this point, the exhortation to think positively is “an additional burden to an already devastated patient,” as oncology nurse Cynthia Rittenberg has written. 26 Jimmie Holland, a psychiatrist at Memorial Sloan-Kettering Cancer Center in New York, writes that cancer patients experience a kind of victim blaming:
It began to be clear to me about ten years ago that society was placing another undue and inappropriate burden on patients that seemed to come out of the popular beliefs about the mind-body connection. I would find patients coming in with stories of being told by well-meaning friends, “I’ve read all about this—if you got cancer, you must have wanted it. . . .” Even more distressing was the person who said, “I know I have to be positive all the time and that is the only way to cope with cancer—but it’s so hard to do. I know that if I get sad, or scared or upset, I am making my tumor grow faster and I will have shortened my life.” 27
Clearly, the failure to think positively can weigh on a cancer patient like a second disease.
I, at least, was saved from this additional burden by my persistent anger—which would have been even stronger if I had suspected, as I do now, that my cancer was iatrogenic, that is, caused by the medical profession. When I was diagnosed I had been taking hormone replacement therapy for almost eight years, prescribed by doctors who avowed it would prevent heart disease, dementia, and bone loss. Further studies revealed in 2002 that HRT increases the risk of breast cancer, and, as the number of women taking it dropped sharply in the wake of this news, so did the incidence of breast cancer. So bad science may have produced the cancer in the first place, just as the bad science of positive thinking plagued me throughout my illness.
Breast cancer, I can now report, did not make me prettier or stronger, more feminine or spiritual. What it gave me, if you want to call this a “gift,” was a very personal, agonizing encounter with an ideological force in American culture that I had not been aware of before—one that encourages us to deny reality, submit cheerfully to misfortune, and blame only ourselves for our fate.
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* “Bad” genes of the inherited variety are thought to account for less 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, groups like Breast Cancer Action argue, suspicion should focus on environmental carcinogens, 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 carcinogens 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.