Voo-doo treatments

I don't have anything against alternative treatments if you combine them with tried-and-true treatments.

Punk novelist Kathy Acker succumbed to breast cancer in 1997 after a course of alternative therapies in Mexico. Steve Jobs tried alternative therapies ...

I put my faith in science, even if this means trembling, swelling, surrendering significant parts, and oozing post-surgical fluids. The surgeons / oncologists understand cancer.

Before Betty Ford went public, breast cancer was a dreaded secret, endured in silence and euphemized in obituaries as a long illness. Today, breast cancer is 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. There are four major national breast-cancer organizations, of which the mightiest, in financial terms, is The Susan G. Komen Foundation. Komen organizes the annual Race for the Cure©, which attracts millions of people - mostly survivors, friends, and family members. Its website provides 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. Now breast cancer has blossomed from wallflower to the most popular girl at the corporate charity prom. Beast cancer has been able to count on Revlon, Avon, Ford, Tiffany, Pier 1, Estee Lauder, Ralph Lauren, Lee Jeans, Saks Fifth Avenue, J C Penney, Boston Market, Wilson Ahletic Gear, etc. 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 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. There are a number of pink-ribbon-themed breast-cancer products. You can dress in pink sweatshirts, denim shirts, pajamas, lingerie, aprons, 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 all of this pink-washing is designed to line the pockets of corporations.

Some of the breast-cancer accessories are made by breast-cancer survivors themselves such as the pillow my nurse navigator, Sarah, gave me right after my surgery. In most cases a portion of the sales goes to breast-cancer research.

During my journey, I have learned new words and terms: seroma, cognitive deterioration, mind fog, brain freeze, recurrence rate, aromatase inhibitors, Arimidex, athralgias, estrogen receptor positive (ER+), progesterone receptor positive (PR+), HER2 status, HR+ (hormone-receptor-positive),Tamoxifen, selective estrogen receptor modulator (SERM), sentinel node mapping, JP drains, edema, lymphedema, etc.

Years ago, when the disease went hidden behind euphemism and prostheses, medicine was a solid patriarchy, women's bodies its passive objects. The Women's Health Movement, 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, with follow-up calls from a nurse navigator, Sarah, my cancer buddy, who also battled breast cancer.

Pink ribbons are great for bringing awareness to this dreadful disease. 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 disease' and insistent on more user-friendly approaches to treatment. It was feminist health activists who led the campaign, in the 70s and 80s, 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 70s, of proceeding directly from biopsy to mastectomy. More recently, feminist advocacy groups such as the San Francisco-based Breast Cancer Action and the Cambridge-based Women's Community Cancer Project helped blow the whistle on high-dose chemotherapy in which the bone marrow was removed prior to otherwise lethal doses of chemotherapy and later replaced - to no good effect, as it turned out.

Like everyone else in the breast-cancer world, the feminists want a cure, but they even more ardently demand to know the cause or causes of the disease without which we will never have any means of prevention. Bad genes of the inherited variety are thought to account for fewer than 10 percent of breast cancers, and only 30 percent of women diagnosed with breast cancer have any known risk factor (such as delaying childbearing or the late onset of menopause) at all. Bad lifestyle choices like a fatty diet have, after brief popularity with the medical profession, been largely ruled out. Hence suspicion should focus on environmental carcinogens, the feminists argue, such as plastics, pesticides (DDT and PCBs, for example, though banned in this country, are still used in many countries and are on the produce we import and 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 anti-corporate.

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

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 ...

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 '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 support groups identify themselves, A.A.-style, as we convene to share war stories and rejoice in our 'survivorhood': 'Hi, I'm Irene and I'm a 50-day 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 am much happier now.'

And 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:

'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.'

So I guess 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 - 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. 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, Mammmagazine - 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.

As if breast cancer is a chance for creative self-transformation - a makeover opportunity.

Are you fucking kidding me?

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 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 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.'

Try posting a statement on the Komen.org message board, under the subject line 'angry' briefly listing your heartfelt complaints about debilitating treatments, recalcitrant insurance companies, environmental carcinogens, and, most daringly, sappy pink ribbons. You will receive a chorus of rebukes from breast cancer sisters.

I remember my friend Cleo's text message:

'I'm going to another fundraiser, all the money that is raised, all the smiling faces, it's all a crock of shit.'

'Culture' is too weak a word to describe all this. What has grown up around breast cancer in just the last 15 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 millions of people every year. Everything comes together at the races: celebrities and corporate sponsors are showcased.

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 4-day, 60-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 $12–16 billion-a-year business in surgery, breast health centers, chemotherapy infusion suites, radiation treatment centers, mammograms, and drugs ranging from anti-emetics (to help you survive the nausea of chemotherapy) to tamoxifen (the hormonal treatment for women with estrogen-sensitive tumors). But what's to complain about? Seen through pink-tinted lenses, the entire breast cancer enterprise - from grassroots support groups and websites to the corporate providers of therapies and sponsors of races - looks like a beautiful example of synergy at work: cult activities, paraphernalia, and testimonies encourage women to undergo the diagnostic procedures, and since a fraction of these diagnoses will be positive, this means more members for the cult as well as more customers for the corporations, both those that provide medical products and services and those that offer charitable sponsorships.

But this view of a life-giving synergy is only as sound as the science of current detection and treatment modalities, and, tragically, that science is fraught with doubt, dissension, and what sometimes looks very much like denial. Routine screening mammograms, for example, are the major goal of awareness, as when Rosie O'Donnell exhorts us to go out and 'get squished.' But not all breast cancer experts are as enthusiastic. At best the evidence for the salutary effects of routine mammograms - as opposed to breast self-examination - is equivocal, with many respectable large-scale studies showing a 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.'

Even if foolproof methods for early detection existed, 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 and arimidex. 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. 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 Sarah, my cancer buddy, tells me, 'Irene, you are doing great,' I reply, 'I haven't really done much of anything, I tell her, anything but endure.' Courtesy restrains me from mentioning the fact that there's no way to know how many other possible cancer cells may be carving out new colonies right now. She insists I should be proud. For me at least, breast cancer will never be a source of identity or pride. It is not okay.

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 man-made, 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.

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 is 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 much, much less.

When you consider approximately 30% of women diagnosed with breast cancer (regardless of the Stage and Grade) will 'ultimately' die of this horrible disease, the Australian aborigines had it right: voodoo death ...

Will I make it to 5 years? Yes. Will I make it to 10 years? Most likely. 15? I will be 65 in 15 years. Who knows. What matters to me is not the amount of years I have left to live. The quality of my life is so much more important. I wake up everyday grateful to be alive and to be given a second chance. I don't take anything for granted. And as I have mentioned many times before, Life is good!