Читать книгу Malignant - S. Lochlann Jain - Страница 9
ОглавлениеIntroduction
We Just Don’t Know It Yet
I knew a woman who went to medical school because she wanted to be with people at critical, life-changing moments; she imagined that sharing dire information would create an intense mutual experience.
My own decidedly undramatic life-changing moment took place in a tiny, somewhat battered office. The doctor flipped back and forth and back again among the three pages of the report she had received from my radiologist. As she fidgeted, I surveyed the posters on her office wall of Banff National Park, in the Canadian Rockies, where I had been hiking the previous day as I wound up a visit with my parents before flying back to my job in California.
As my eyes wandered, I could tell the doctor really, really didn’t want to look at me. Finally, she glanced up and, in a last-ditch effort to avoid her part in the vaunted Bad News Experience, asked if I already knew what the report said. I shook my head.
A few minutes later, as we drove away from the curling-edged posters in that office and toward the surgeon’s office to see how soon I could get the cancer out, my mother called my dad and asked him to look after the kids for another couple of hours. Meanwhile, I looked at more pictures—this time, those in the brochure the nurse had given me. I speculated on what “invasive” meant. Half of all Americans will be forced to consider this word at some point, and half of those will die wondering why the billions of research dollars thrown at the word haven’t exterminated it from the English language.
Cancer can kill: this fact makes it concrete. Americans collect data on it, write histories and memoirs about it, blog about it. Still, it’s a devious knave. Cancer takes some people within days of diagnosis, while other people spend years waiting for a final outcome. While one sleeps it may clump into hard or soft tumors, or it may eddy into lymph fluid or lodge in the crook of one’s liver or lung to initiate new colonies. Often the treatment, not the cancer, ties one to the sofa. At diagnosis, I knew I was in trouble not because of how I felt, but by the look on my mother’s face.
Too wily to be tethered to a solid noun, the conundrums of cancer match its craftiness. Despite news articles promising a cure since 1907 (albeit by putting patients into the ice box),1 scientists continue to furiously debate how cancer arises, whether it should be studied as one disease or hundreds, whether mice provide adequate research models, and who might benefit from the arsenal of commonplace, if dangerous, cancer treatments such as chemotherapy and radiation. Policymakers and political lobbyists discuss (or don’t) how to test and regulate the thousands of carcinogens in our environment and the significance of cancer clusters. And despite some of the shiniest, priciest, most marble-staircased hospitals in the country, treatments remain only partially effective for most cancers. The word’s tangibility dissolves in sheer bafflement, for doctors and patients alike, over what, exactly, it describes.
A week after my diagnosis, following the first of several operations, my surgeon presented me with my pathology report. Abbreviated as “path report,” this description of the removed tissue joins other morsels of cancer lingo, such as the conversion of stomach-wrenching chemotherapy into the too-familiar “chemo,” the more manageable “mets” or “hotspots” for life-threatening metastases. His meeting with me and my mom was especially awkward because my mother had been a student of his in a medical school class that had petitioned against his use of pornographic slides in his lectures. A clearly nervous medical student joined the quartet.
Dr. Slideshow had surely had similar interactions hundreds of times—the patient’s questions hastily scrawled on slips of paper, based on half-understood newspaper articles summarizing medical trials; the uneasy smiles; the vague attempts at reassurance. The physician’s role in going over the path report must get tedious; despite the shock and horror for the patient, cancer treatments are fairly rote, based on ludicrously few variables.
My path report began with a description of the original tissue: “In the fresh state, the specimen weighs 683 g.” (Fresh! Specimen!) I pictured the lump of flesh on a Weight Watchers scale ready for dissection. From the description of what had been my tissue, the report rapidly narrowed into a series of inscrutable markings and scores. It indicated how many nodes contained cancer and how many and what size the tumors were. At that time, I had only the vaguest notion of cancer—so far in my brief cancer-life it had been a conglomeration of humiliation, shame, a thing that threatened my shot at tenure, and random concerns about artificial sweeteners and nonstick pans. The path report, in contrast, represented cancer as a set of numbers. The image of a computer converting lines of poetry into zeros and ones flashed through my mind.
The path report rendered my flesh into data points comparable to other people’s flesh, and from there into a mountain of evidence about various treatments. By the time treatment ended, the “specimen” would be far from “fresh,” so the mobile path report came in handy. I took it to the members of my cancer circle—the many specialists who could translate the numbers into their expert languages—and later, in considering a medical malpractice suit for three years of missed diagnoses, to my attorneys. The report became a vector connecting me to all the bureaucracies each represented. My flesh had become the pathology report—portioned, sliced, flattened onto slides, observed, categorized, and finally rendered into this emailable document.2
I couldn’t see a way to admit that the three pieces of paper so utterly wrecked me and at the same time audition for a strong character role within the medical performance (surely the patient should be a respectable, full-fledged member of the team, not merely a victim of circumstance?). In truth, I didn’t know the least thing about my new role. I could more or less enact curiosity-driven researcher, loving girlfriend, stern teacher, doting Mima, dependable big sister, cash-strapped daughter, fun-loving chum, polite dinner guest, competent student, active teammate . . . but sick patient? Not in my repertoire.
The italicized type and banal officiousness of the path report served as my portal to an entirely new world, one Susan Sontag lavishly described as “the kingdom of the ill.”3 My journey to this kingdom differed from the romantic tradition of my discipline, anthropology, whose research trips require years of language preparation and mythic days floating down pristine rivers in dugout canoes. The moat I crossed to take up my new residence was more like a silty, crocodile-filled gorge, with no paddle in sight.
I had previously thought of cancer as a straightforward enough, if unwanted, thing embedded in a well-oiled institution that closely monitored its flock in pursuit of the knowledge that would shortly result in a cure. The histories of cancer that I’d read generally told a story of progress, from the use of primitive treatments (ground puppy bones, sandalwood, turpentine) to more effective ones (x-rays and vaccines.)4 Even the bleakest of histories assume that a cancer (part cell division, part social history) can be described within the context of the history of medicine and the evolution of research strategies, treatments, and activism.5
In that moment of my postdiagnostic, post-first-surgery encounter with the doctor-resident / path report / mom-gown-bandages / possible micro-metastases / white coat / tiny room, I realized that no well-managed organization watches over cancer. Cancer, in all its nounishness, refers to everything . . . and nothing. Cancer pervaded the office, residing in each of these objects and people and the relations among them, but nowhere could it be specified as a thing. The main tumors were gone: cancer had only just begun.6 What on earth, then, do we mean when we refer to this concept, cancer?
Bitter debates, driven by jostling participants, rage around basic questions. Should premalignant lesions count as cancer when it comes to gathering statistics and deciding on treatment? Should insurance cover the costs of not exactly medically necessary reconstructive surgery? What about experimental treatments? Where and how should we even be looking for cancer? In each of these issues, the stakes are enormous, yet hardly anyone seems to challenge the terms and intersections of the debates. Anything but an objective thing, cancer can be better understood as a set of relationships—economic, sentimental, medical, personal, ethical, institutional, statistical.
Given the billions spent and made in developing treatments and the magnitude of the destruction of bodies and the social fabric, we desperately need new ways of understanding cancer—not as a disease awaiting a cure, but as a constitutive aspect of American social life, economics, and science. Malignant builds on this idea, presenting cancer as a process and as a social field, while also exploring its brutal effects at the level of individual experience.
I read personal, medical, economic, cultural, and epistemological together. These realms have—in often entirely obvious but complexly discounted ways—misleadingly separated the fact of cancer from its all-too-human interpretations. My mash-up includes the peculiar authority of the socio-sexual psychopathologies of body parts; the uneven effects of expertise and power; the possibly cancerous consequences of donating eggs to a girlfriend desperate to have a baby; the huge industrial investments that manifest themselves as bone-cold testing rooms; and the teeth-grittingly jovial efforts to smear makeup and wigs over the whole messy problem of bodies spiraling into pain and decay.
The quest to discern the interests behind how and when cancer is named can also diagnose the interests that produce and treat the disease. Malignant seeks the places at which these reciprocating diagnoses most paradoxically intersect, such as prognoses, research trials, legal battles, and screening debates. Unraveling the guiding logics of these institutions enables us to better understand who claims knowledge about cancer, and how—through methods as varied as statistics gathering or lay experience. While my argument will hopefully be useful in considering other diseases, a focus on our affair with this fundamentally unknown illness uniquely shines light on the institutions and perspectives that constitute illness in America.
PERFECT STORM
If you look up cancer in a medical dictionary, you will read that cancer begins when an injured cell speeds up the normal process of division. Eventually these quickly dividing cells may form a tumor, which then may build its own set of blood vessels in order to feed itself in a process called angiogenesis. (Blood cancers, or liquid tumors, don’t form static tumors in quite the same way.) Some cells may break off from a localized tumor and move to a different part of the body, colonizing a vital organ or bone. For most cancers, once this metastasis happens, you are probably sunk (a term one will not find in medical journals but that nonetheless feels accurate). These distinguishing features describe at least several hundred diseases that flutter under the cancer banner.
A more truthful account of cancer would require a full-blown epic movie series, for cancer has become a central, silent, ubiquitous player in twentieth- and twenty-first-century America. One would watch images of our greatness fading in and out to a heart-swelling orchestral score. Each of America’s iconic industries—agriculture, oil and gas, cosmetics, plastics, pesticides, tobacco, medicine, construction, military—has undoubtedly led to tens of millions of cancer deaths. The unique way in which cancer presents, decades after exposures, makes it central to the growth of both the industries and the illness, in short, to the existence of the United States as we know it.
If I were to direct such a movie, I would start by examining how cancer has become a potent metaphor for anything evil or scary. As a result, cancer—or at least the fight against it—provides a moral ground for anyone taking a stand against something bad, something that indeed might “metastasize” or spread, whether guns, fascism, or gay people. If the disease itself provides the archetype of malevolence such that “curing cancer” offers an equivalent to “saving the world” in all kinds of thought experiments, the stereotype of the diseased victim that one treats with kid gloves can be useful, too. Witness Tour de France winner (or ex-winner, since he has now been stripped of his seven victories) Lance Armstrong’s use of his year in treatment to at once explain his greatness and divert attention from his performance-enhancing drug use.
Tobacco’s relation to cancer has been well rehearsed. But for good measure my production crew would run footage from the 1970s, describing how the cigarette industry brains shifted the demographics of lung cancer with the jingle “You’ve come a long way, baby” for their special feminist cigarette, Virginia Slims. By sponsoring women’s tennis and advertising specifically to African Americans when no one else would, cancer incidentally joined progressive causes. The tobacco industry’s role in cancer does not end with the millions of lung cancer deaths. The industry inadvertently enabled the rise of the field that became epidemiology as a result of controversial attempts to link lung cancer to smoking. My blockbuster would describe how cancer also provided opportunities for major public health campaigns and philanthropic endeavors, shaping the form of both of those areas of the American Experience. In one ironic twist, the widow of the ad executive behind the 1930s advertising campaign “Reach for a Lucky Instead of a Sweet” became one of the main activists promoting the War on Cancer, launched in 1971. Cancer giveth fortunes and taketh them away.
Another thread of the documentary would focus on notable Americans prematurely lost to the disease: from Steve Jobs to James Baldwin, from Humphrey Bogart to Judi Bari. A full section would detail the life of Rachel Carson, the scientist who initiated the modern environmental movement with her book Silent Spring before her own name was added to the list of brilliant people—people we needed—dead of cancer. I’d include a section titled “The Celluloid Send-Off,” which would review a century of film and the star appearances of cancer as a sentimental storytelling trope.
I would wrap my producer’s blood pressure cuff around the military technologies that pumped the lifeblood of an American Century. The development of chemotherapy resulted from the autopsies of soldiers who had been killed by nitrogen mustard gas in World War I; it was found that the gas eradicated white blood cells from bone marrow and lymphatic tissue. Although the use of radiation as an experimental therapy for cancer patients began before World War II, the increased focus on its development coincided neatly with the government’s attempt to represent the “friendly” potential of nuclear technology. (Sure, radiation killed all those Japanese people, but it can do good things too!) Both of these cancer treatments led to the creation of a massive, powerful, and lucrative infrastructure even amid controversy about their efficacy. The military and cancer have enabled one another in ways that have yet to be understood.
Midcentury cancer experts adopted industrial research methods—often those developed by the automobile industry—in which multidisciplinary teams worked together.7 Meanwhile, the use of cancer patients for medical experiments during the early and mid–twentieth century led directly to the development of the human subjects protocols in 1978 that now protect patients and guide all manner of research. At least half an episode of my film would be devoted to the first treatments for the HIV/AIDS epidemic, which were initially developed as experimental cancer treatments in the 1960s.
We would have to figure out a way to trace the forces at play in the appearances and disappearances of the corroding bodies that lie at the center of each of so many conflicting projects.
None of these facets of cancer-in-action are in the dictionary—but they would be in my documentary. So would the growth trajectory of the pharmaceutical industry, along a crucial vector starting with Jonas Salk’s 1955 claim that patenting the polio vaccine would be like patenting the sun and extending to Genentech’s proclamation in 2008 that it would charge the highest market rates for its cancer drug Avastin. (And it did so for three years, until the Food and Drug Administration [FDA] withdrew Avastin from the market as a breast cancer treatment, since it did nothing to improve survival rates.)8
The documentary would not, however, attempt the impossible project of unscrambling the too-quickly dividing cells from American history. Much as we might want to render cancer an external threat to be battled, it just is not so. Cancer is our history. Cancer has become us. Manifest within individual bodies—many, many bodies—it is also embedded within this country’s key industries, medicine not least among them.
The combination of a for-profit medical system, the rise of trials and institutionalized industrial methods of cancer research and treatment, and the enormous investments required for radiation and chemotherapy have created the perfect storm, turning the once-backwater specialty of oncology into a major economic force that ties together treatment, pharmaceuticals, insurance, law, and research. Cancer has the highest per capita price of the nation’s medical conditions.
In the last five decades, cancer has gained traction as a multibillion dollar business. The National Cancer Institute’s budget alone totaled $5.3 billion in the fiscal year 2011–2012; other federal agencies (including the FDA, Centers for Disease Control [CDC], and Department of Defense [DOD]) chip in a further $670 million for cancer research; and nonprofits, industry, and the state contribute several hundred million more.9 The National Cancer Institute (NCI) reports that the medical costs of cancer care add up to some $125 billion, with a projected 39 percent increase, to $173 billion, by 2020,10 while the National Institutes of Health (NIH) doubles that with an estimate for 2010 of $263.8 billion. Their accounting includes $102.8 billion in direct medical costs (or health expenditures), $20.9 billion for indirect morbidity costs (lost productivity due to illness); and $140.1 billion for indirect mortality costs (lost productivity due to premature death).11
While some methods of calculation find that cancer and its patients take up too many resources, from another angle, cancer patients are cash cows. Each cancer patient generates millions of dollars in revenues. If one wonders why we would extend the life of a pancreatic patient for a dozen days with a $16,000 drug, let’s remember that this money does not evaporate after twelve days; it continues to circulate in stock prices, salaries, and smaller crumbs of an infinitely profitable cancer pie.12 Just as the demon of communism justified the proliferation of a lucrative nuclear industry, so cancer fills the core of so many economies that if a cure were to be found, the economy might just crash.13
The medical industry has found a way to align (or perhaps it emerged from the alignment of) just enough ducks to be able to tart up a coercive economy in market terms. Putting a market value on health makes this possible. If you wanted my money, the best way to get it would certainly not be to rob me (I have only $43 in my pocket) or to take me to court (my insurance will offer you only $1 million if you slip on a banana peel in my apartment). Nor would it be to take me to the collection agency, offer me a mortgage, or get access to my life insurance. The best way to get my money would be to offer me many rounds of treatment for a deadly illness and make sure my insurance pays for them. For medical care—more than housing, childcare, education, food, fashion, transportation, or gym fees—an insured person can pay much, much more than his own worth. She can pay much more than any free market would bear. This economic skew creates a health bubble in which anyone with insurance, and especially anyone with both cancer and insurance, is a gift that just keeps on giving to those who can provide what he needs.14
The resulting distortion affects consequential definitions of health. My financial advisor, for example, might recommend that I take pills with a co-pay of $35 a month, rather than pay a gym membership fee of $99 a month. Costs remain high even for tests and treatments that have not significantly improved in the last decade, such as magnetic resonance imaging. It’s no surprise, then, that healthcare has become the most profitable industry in the economy.15 And most people will pay anything for a small chance at living longer. As one young man put it, “If they told me to eat pinecones, well, I would do it.” If oncologists started prescribing them, and insurance covered the cost, pinecones would become more and more expensive. One in five dollars in the economy goes toward this haphazard version of “health.”16
As many commentators have noted, a privately funded, for-profit medical system does not create the most likely scenario for the shattering of scientific frontiers. The pharmaceutical industry offers a case in point. With the cost of bringing a drug to market in excess of $800 million and low FDA approval rates for new cancer drugs, any investment in new drugs is highly risky. Simple math confirms that drugs with expandable markets will bring more profits than drugs for targeted illnesses impacting smaller populations. The annual top-ten list of most profitable drugs in the United States typically includes drugs with elastic definitions of diagnosis—depression, anxiety, insomnia, high cholesterol, sexual dysfunction: all markets that have been steadily increasing.
This market force disinclines private industry from working on subcategories of cancer. Various problems result. First, drugs are often tested on large and diverse subject groups in order to capture the largest populations. The results of such studies make it impossible for doctors to extrapolate just which individuals would benefit from any given treatment. Second, little incentive exists to produce generic drugs, which bring low profits. For this reason, for example, mechlorethamine, or nitrogen mustard, one of the original chemotherapy drugs tested in the 1960s in the treatment of childhood leukemia, has been in short supply. A recent study on the impact of the shortage found that the substitute drug significantly reduced survival, having “devastating effects on [children] with [otherwise curable] cancer.”17
Several common cancers, therefore, come under the purview of rare diseases, which the Orphan Disease Act of 2002 describes as affecting “more than 200,000 in the United States and for which there is no reasonable expectation that the cost of developing and making available in the United States a drug for such disease or condition will be recovered from sales in the United States of such drug.”18 This remains generally the case even with the rise of a few “boutique” drugs, in which extremely expensive drugs are profitable at the cost of excluding many from access.19 Ironically, what makes for good science makes for poor economics; subsets shrink markets, thus reducing the chances that companies will develop more specific treatments.
Thus, health resists market quantification. Putting health in market terms somehow crushes the notions of choice that undergird true market actors and give them an intimidating tinge (sure, you could refuse this $100,000-a-week incubator for your sick child). Such systematic market and health forces have nothing per se to do with ill intent. (I’m not saying that anyone is evil.) No one necessarily wants corporate interests to trump human well-being or important scientific research. But the chances that a sector whose binding legal concern is stockholder profit will lead to adequate research and better public health are slim. When the question becomes one of math, anyone can do it.
While insured people can “afford” much more than we are worth, the expenses that remain, such as co-pays, deductibles, or costs after certain coverage ceilings, can be crushing. When I moved from Canada to the United States to go back to work after my treatment (yes, I ended up staying in Canada for treatment), my insurance covered only 80 percent of my follow-up medical care. The bills from the Stanford Cancer Center for the remaining 20 percent added up to hundreds and then thousands of dollars (much more than I was told when I called in advance to find out how much it would cost, and more than half of that total resulting from an accounting error). The bills came weekly, not monthly—no matter how many hours I spent on the phone explaining the mistake. Soon enough I felt trapped inside a snow globe with endlessly generated medical bills spilling down around me, creating ghastly drifts of white envelopes with that Stanford crest that came to mean “do not open this.” Collection agencies call 46 percent of cancer patients in the United States; I was one of them.20 Experts often attribute over 60 percent of personal bankruptcies in the United States to the catastrophic financial burden of illness, with little mention of the skewed economy that distributes not just enormous wealth but also enormous debt. Even if you enter the illness casino with a few coins jangling in your pocket, seeking healthcare is a gamble in which the house enjoys vastly superior odds.
To add to the built-in paradox of the for-profit healthcare system, money made from treating cancer aligns a little too comfortably with the profits made from causing cancer. In the FDA’s first attempt to bring cigarettes under their regulatory purview as a drug (nicotine) delivery device, the Supreme Court in 2000 weighed economic and physical health and, in the final opinion, explicitly noted that the tobacco industry played too important a role in the U.S. economy to be regulated by the FDA—even as it recognized that nicotine was an addictive drug whose dose tobacco companies intentionally manipulated.21
Here is another example that demonstrates the tightly linked interests that both cause and treat cancer. In 1978, Imperial Chemical Industries (ICI), one of the largest companies in the world, specializing in agrochemicals and pharmaceuticals, developed the cancer drug tamoxifen. In 1985, along with the American Cancer Society, ICI founded the National Breast Cancer Awareness Month with the aim of promoting mammography as the most effective tool against breast cancer. In 1990 Imperial Chemical Industries was accused of dumping DDT and PCBs, known carcinogens, into the Long Beach and Los Angeles harbors.22 Zeneca, producer of tamoxifen, demerged from ICI in 1993, and later merged with Astra AB in 1999 to form AstraZeneca. Astra AB had developed the herbicide acetochlor, classified by the EPA as a probable carcinogen.23 In 1997 Zeneca purchased Salick Health Care, a chain of for-profit outpatient cancer clinics. Subsequently AstraZeneca launched a major publicity campaign encouraging women to assess their risk factors for breast cancer, downplaying the dangers of tamoxifen in order to create a market for its prophylactic, or chemopreventative, use and, more recently, for the breast cancer drug Arimidex (anastrozole), approved in 2002 and used as an alternative to tamoxifen (Arimidex went off patent in 2010).24
Dr. Samuel Epstein, a professor emeritus of occupational and environmental health at the University of Illinois School of Public Health, commented on this situation: “You’ve got a company that’s a spinoff of one of the world’s biggest manufacturers of carcinogenic chemicals, they’ve got control of breast cancer treatment, they’ve got control of the chemoprevention [studies], and now they have control of cancer treatment in eleven centers—which are clearly going to be prescribing the drugs they manufacture.”25 AstraZeneca has been successfully sued by several states for illegal price inflation of tamoxifen. Among other such cases, AstraZeneca settled one in Idaho and lost another on appeal in Massachusetts when the court upheld a $12.9 million fine.26
Similarly, even while General Electric and DuPont sell millions of dollars’ worth of mammography machines and film annually, they have also poured tons of toxic waste into the air and water, creating high numbers of Superfund sites (abandoned hazardous waste sites so designated by the Environmental Protection Agency).27
In such a climate, the focus on awareness and screening does not bring us any closer to understanding the ways that key aspects of the economy involve both causing and treating cancer. (All of us who drive, buy strawberries, live in homes, wear PJs coated with flame retardant, and receive purchase receipts covered in carcinogens take part in that.) Yet even if one believes in the legitimacy of causing and curing cancer as market opportunities, cancer cannot be understood solely through an analysis of economic interests.
Susan Sontag believed that one must free illness of its metaphors in order to truly see it, and she dug up the history of derogation surrounding the proverbial emperor of maladies.28 I suggest, on the contrary, that the key lies not in undressing the emperor, but in examining the costumes. Cancer appears only at the nexus of our ways of thinking about it. I don’t mean to argue that “it” doesn’t exist, or that it doesn’t maim and kill people. But it can’t carry meaning outside of the meshy nets we use to locate and describe it. The history that Sontag identified, as well as many other histories that she didn’t, offers clues about cancer’s role in America.
Cancer, as a chimera, gains different registers of meaning in different places. It envelops and is an effect of oncologists, insurance provisions, support groups, survivor workshops, and medical research. Cancer is stacks of Reader’s Digests, furtive glances and hasty conversations in waiting rooms. It is evenings spent working out complicated medical bills and long phone calls with befuddled insurance bureaucrats. It is cracking the code of how to play your “cancer card” and what value, versus what backlash, it might have. It is wondering if anyone would come to your funeral. Would you look like a big dork if you died in the summer while everyone was on vacation?
FIGURE 1. California Proposition 65, passed in 1986 through a ballot measure, requires businesses to post warning signs when exposing customers or bystanders to specific levels of chemicals listed on a twenty-two-page roster of known, legal carcinogens. The business must determine any likely exposure that will result from a chemical. The signs are posted everywhere in California, like flags of surrender. (Photo by author, Stanford Cancer Center parking lot)
In a renowned 1923 analysis of gift exchange in different cultures, the French anthropologist Marcel Mauss unpacked connections he found in a ritual that had previously been understood as the purely benevolent act of offering and receiving. In so doing, he coined a term, total social fact, for a practice whose effects both connect and fissure through seemingly distinct areas of life, thus weaving them together. In a legendary passage, Mauss explains the total social fact (I substitute cancers here for practices of gifting that he describes): “These phenomena are at once legal, economic, religious, aesthetic, morphological and so on. [Cancers] are legal in that they concern individual and collective rights, organized and diffuse morality; they may be entirely obligatory, or subject simply to praise or disapproval. [Cancers] are at once political and domestic, being of interest both to classes and to clans and families. They are religious; they concern true religion, animism, magic and diffuse religious mentality. [Cancers] are economic, for the notions of value, utility, interest, luxury, wealth, acquisition, accumulation, consumption and liberal and sumptuous expenditure are all present.”29
Like a Maussian gift, cancer has entered our collective imaginations at all of these levels. Not only does it work through the metaphors of metastasis, recurrence, and remission, but it is also at one moment a paper trail and at another an identity, at one place a statistic and at another a bankruptcy; here, a scientific quandary, there, a transcendent image of a cell. One person’s losses offer another a chance to leave a mark on humanity. A body image taken offers another to be found. The project of making cancer—as plural as it is singular, as vast as it is microscopic, as diffuse and discrepant as it is descriptive—resonates under one word. The simple noun cancer consolidates this collective achievement.
Cancer in all its complexity is not solely a biological phenomenon, but a politics with which to engage and struggle. Why does metastatic breast cancer receive only 3 percent of research dollars when the tens of thousands of people who die of breast cancer will die of metastatic cancer? Who suffers the effects of the recent court decision to disallow graphic warnings on cigarette packages? How are cost and benefit determined in screening debates? Who should pay for inevitable surgical errors? Who considers, and who suffers from, the unintended consequences of institutional blind spots? The questions framed in various expert and lay areas, and the forms that the answers take, provide clues about the values that underpin our understandings of cancer, just as crude oil oozing from a pipeline onto the Arctic snow discloses the dominant values of the society that laid the pipe. My book is not only about how the framings of cancer affect psychic, medical, and institutional experiences, but also about how understandings of cancer reflect back onto the cultures that have defined it.30
Astrologists and scientists alike derive meaning from the set of dividing cells and its namesake, the constellation in the zodiac. The configuration we dimly recognize as a crab, suspended between its brighter siblings Gemini and Leo, takes shape through a specific alignment of stars, some of which we see as they were hundreds of millions of years ago. Cancer’s earthy doppelganger, also, threatens to disintegrate with each shift in perspective.31 The pathology report, the prognoses, the scars, the data and graphs, the looks on parents’ faces, the shiny hospitals with their infusion rooms and IV drips, the marches and fundraising translate the uncertainty at the center of what we call cancer into a thing that we can call cancer. But just barely.
LAY YOUR BODY DOWN
After my first surgery, Dr. Slideshow wanted to see my new scar. He turned away as I changed into the hospital gown. With the clumsy gestures of my stripping and him turning, we joined a centuries-old pageant. One gown and one stethoscope-in-relation-to-gown—these rituals and costumes make the prodding, cutting, digging, and stitching correspond to an otherwise unthinkable etiquette.
I hold enormous respect for the expertise that doctors gain through their years of tough physical and intellectual training. No denigration of that skill comes with the observation that white coat and hospital gown divide those who define the bureaucratic and medical realm of illness from the one who necessarily, if perhaps not wholly, comes to be defined by it. Recognizing how that dynamic operates might be of service to everyone, since as doctors and/or as patients, we all play roles in this script.
Forms of cancer-knowledge tend to push each participant to identify with one side of the equation (objective, scientific, “neutral”) or the other (subjective, emotional, “biased”).32 As a patient, you can’t forget for an instant that the data do not fully describe your life. But researchers and scholars tend to frame the disease in the abstract, as if it could exist outside of the actual people who manifest it. Because of that propensity, it takes an effort to consciously remember—really remember—that people’s lives are more than just data, that actual people play critical roles in the very existence of the disease and how we understand it.
No matter how sympathetically told, medical history necessarily goes on to tell of the ultimate “triumph” of the treatments.33 In the 1960s, for example, hematologists began testing the effects of high and low doses of chemotherapy on children with leukemia. Yet the temporal horizon of the children stretches not over decades, but over months, days, minutes. Their stories do not move on to the next, better version of chemotherapy. Some of these children abide a horrible illness and die; some live with continued health issues, missing school, losing and gaining friends. Whatever the details, cancer creates for these children a new kind of story of their lives, and it’s not an abstracted story of medical progress.
A pairing of articles can further demonstrate the stakes in this clash between the modes of thinking ascribed to the patient (subjective etc.) and to the doctor (objective etc.). Rose Kushner, a well-known journalist in the 1970s, worked to bring cancer out of the closet at a time when many people were still not told of their diagnosis, let alone expected to take an active role in treatment decisions. After her cancer recurrence, Kushner wrote about the then-new treatment of chemotherapy in an article titled “Is Aggressive Adjuvant Chemotherapy the Radical Halsted of the ’80s?” For the reasons she cites, she opted against taking the chemotherapy.34
Like many cancer patients, Kushner acquired an encyclopedic knowledge of the scientific research on her disease. A procedure of her time, referred to simply as “the Halsted,” consisted of a ghastly mastectomy that removed muscle, tissue, and sometimes bone in order to clear huge margins around the tumor, based on the surgeon William Halsted’s theory that cancer spreads outward from the initial tumor. Shortly before Kushner wrote her article, surgeons abandoned the radical mastectomy after nearly a century of use; trials found it no more likely to stop cancer from recurring than excision of the tumor alone followed by radiation. Thus, Kushner highlights a key point: people with cancer, and especially women, have suffered severe consequences of treatments later found to be at best ineffective, and at worst, profoundly injurious.
In 2007, long after Kushner’s death from metastatic breast cancer, the noted cancer historian and physician Barron Lerner wrote his own commentary on her piece as part of his larger research into the illnesses of celebrities.35 Although in a 2003 history of breast cancer he, too, acknowledged the gender imbalance in cancer treatments,36 Lerner’s reading of Kushner’s article makes clear an irony. Because she had to lay her body on the altar of medical expertise, he suggests, Kushner could not help but be biased in her analysis of the debates about chemotherapy. “Rose Kushner’s award-winning article,” he concludes, “. . . provides a cautionary tale about individuals who function simultaneously as patients and spokespeople.”37 Astonishingly, he thinks she had too much at stake—not because she was a journalist, but because she was a patient—to have truly understood the data.
Kushner observed that the trials for chemotherapy did not include categories for stage and age at diagnosis, thus impairing the ability of oncologists to determine the efficacy of the treatment for specific individuals. Early trial results demonstrated an improved survival rate of only 3 percent, and Kushner graphically listed side-effects of chemotherapy that many physicians discounted: “baldness, nausea and vomiting, diarrhea, clogged veins, financial problems, broken marriages, disturbed children, loss of libido, loss of self-esteem, and [impaired] body image.”38 Despite billions of dollars invested in research and hundreds of trials showing fractional differences in survival rates, the particular cocktail of drugs that Kushner writes about has not significantly changed since its introduction in the 1970s. Neither has the dim likelihood of it working. Indeed, the debate continues—Is it ethical to give thousands of people such a dangerous treatment for the potential benefit of a few?—though chemotherapy has settled into such a standard of care that to refuse it seems like an irrational death wish.
The journalist and patient saw cancer and its medical management as enmeshed in institutional relationships with uncertain pay-offs. On the patient side, chemotherapy offers more than a treatment. A life filled with boring and painful details includes wondering if the phlebotomist will be gentle; hearing the nurse trying to insert the IV needle say, “If I can’t get it in three tries, I’ll find someone else”; imposing on friends and family for a ride home from the hospital. Whether chemotherapy would have saved Kushner’s life cannot be known. The point of her article is clear, however: for some people, the math of risk and chance requires different kinds of accounting in conditions of such deep uncertainty and hazy research results.
Debates about efficacy aside, in suggesting that Kushner should have done chemotherapy Lerner misses an opportunity to understand the inescapably physical experience of a human undergoing an invasive procedure. In his very inability to grasp this, his article underscores how medical history so often elides the stories and experiences created by, and necessary for, the science. He can do this through a logic that is central to the reality of cancer treatments to this day: chemotherapy may or may not work for your future survival if you take it, but it definitely won’t work if you don’t take it.
The difference in perspective made evident in the Kushner-Lerner pairing emerges as a dynamic in thinking about which kinds of evidence gain stature: the interpretation of one who has much at stake by virtue of literally embodying the disease, or the understanding of someone for whom a tightly specified set of research data offers no more than a professional tool. Institutions support the separation and even mutual inscrutability of these forms of knowledge.39 In the hospital, individual bodies take up their roles in a system buoyed by a threat even in its aim to cure: either undergoing or not undergoing what medicine has to offer can hurt you. In the hospital, you know exactly where you stand in relation to those roles: which doors you can use; how your body should be clothed; who can flirt with whom; and which people will be referred to in the third person, even when they are lying right there on the bed. The very design of the place demands certain behaviors and supports certain hierarchies.
Or so I was thinking as I drove down Alpine Road adjacent to Stanford University, where some of the richest, most educated cyclists in the United States find that the narrow cycling path drops them into the middle of a car-infested junction. No matter how high-tech the cars, motorcycles, or racing bicycles in the intersection, nor how brainy or well connected the riders and drivers, they inhabit a system of crisscrossing roads that limits communication among the participants. Whether propped on a leather Brooks bike saddle or swaddled in the leather bucket seat of a Bugatti, communication takes place through honks, swerves, fingers, waves, blinking lights, and physical impact. Which of these primitive actions you can access depends not on your wealth and education, but on the means by which you entered the intersection.
The same word comes to mind when I observe a cyclist dumped in the middle of an intersection fearing the approaching driver talking on his phone as when I think of a patient dreading being treated like a cadaver while under anesthesia: powerless.
COGNITIVE DISSONANCE
The power dynamic resulting from the separation and institutionalization of knowledge in these ways devalues the knowledge that people with cancer derive from undergoing treatment. Perhaps as a result, some survivors respond unfavorably to analyses of cancer by individuals who are presumed not to have experienced the disease themselves. I’ve learned this when giving talks and not coming out as someone who has gone through surgery, chemotherapy, and radiation for fear that my personal experience would discredit my views, make me seem less “objective.” In this trade-off, some survivors then think that I’m an outsider.
Bristly survivors make a valid point. For how could you imagine the scene of the radiation room? The frail gown that had surely covered someone for whom this very treatment hadn’t worked now inelegantly smothers your unease about the dose the machine is emitting and strains to catch the shiver that threatens to displace the crimson rays from the tumor. The soft-rock radio’s ionizing thrum replaces the technicians who moments ago trussed you like a Christmas turkey before saying that’s probably good enough and pressing the button to elevate your scarcely clad prone body higher into the frigid cement vault before bustling down the leaded hallway to cluster in the teddy bear–garnished booth as the machines start to tick and squeal.
I, for one, would not have been able to grasp being an object in other people’s daily work lives—a slippery-veined wriggly mound from which to draw blood; a back-wrenching load on a difficult-to-steer bed needing conveyance from one department to another—had I not gone through the experience myself. I won’t soon forget the doctor who meticulously peeled and then sucked on each in a pile of Hershey’s kisses as he reeled off the statistical likelihood that radiation treatment would work, versus the likelihood that it would produce more and other kinds of cancer. Certainly his view of those statistics differed from mine. Maybe chocolate would have sweetened my end of the deal, but he didn’t offer.
Experience differs again from an outside observer’s social science account of cancer treatment. The humiliation of being told by a group of giggling nurses who can’t put in a catheter that they wished you were still under general anesthetic would not be conveyed by a series of data on catheter implant success and failure rates. Not exactly predetermined, each of cancer’s scenarios funnels possible experiences. From the radiation room to the support group, each new role offers new requirements of physical and emotional discipline, masochism, and passivity. For these reasons, a kind of recognition emerges among people who may identify as cancer “survivors,” akin to the knowing winks that parents of adult children give to those quieting screaming toddlers.
In an ideal world, a cancer diagnosis would come with an explanation of cause and move on to successful treatment. All the small embarrassments could disappear with a bit of psychotherapy if the treatment offered a cure. Would that I could describe that idyllic situation in this book. In our parallel hackneyed universe, cancer’s uncertainties define the structure in which millions of people live, in which decisions are both offered and made: whether to join a trial, have a screening, or take a dangerous and expensive drug.
This book unpacks the head-spinning ricochet that characterizes a cancer “journey.” It revolves around the stamps put into my passport by the immigration officials at the gates of the kingdom of the ill: Diagnosed with a late-stage cancer at age thirty-six, after three years of misdiagnoses by three different doctors. Nearly three-quarters of the seventy thousand or so adults under the age of thirty-nine who are diagnosed with cancer each year have late-stage cancers because cancer is wrongly thought of as an old person’s disease. Not uninteresting, but not so very special. Underwent hormonal therapy to be an egg donor for former partner. Hundreds of thousands of young women have been egg donors. On average, each IVF (in vitro fertilization) baby born in the United States has been the result of four rounds of brain- and body-altering hormonal treatments on a mother or an egg donor. Not much research exists on those culturally acceptable treatments. Again, not a particularly unique story. An out queer. Me and millions of others, though the meaning of and phobias around that word have changed dramatically during my adult life. Now, a queer person is considered different from many, but no longer so stomach-turningly odd as to require eviction from an apartment. Two small children living with her, one born three months prematurely and still hooked up to an oxygen tank; resided with parents during treatment. Many adults in their thirties find themselves in this odd bind of trying to be adults while relying on the very family that may threaten to turn them back into children. An anthropologist with expertise in medical anthropology and injury law. We number at least in the tens, perhaps even hundreds. Canadian. Something of an outsider, though like thousands of my fellow denizens, I’ve lived in the United States for years. In other words, there is nothing special about my quotidian experiences in the cancer world. The orthodox details of my life—the very ordinariness of it all—make the story worth telling.
Any good anthropologist respectfully asks the reader to follow him or her on a voyage, and then on to an interpretation of that trip. Anthropologists who work in the field not only observe the lilt of the language and the voguish headgear, an estuary’s time-polished obsidian, and one’s bug-bitten ankles. The ethnographer calls attention to these social and physical features in order to offer insights into the larger processes of human interaction. The discipline posits that having been there, having at once observed and participated, provides a perspective not available in other ways. Tracing a finger along the blue line that represents the American River on a map of California does not equate to paddling the baroque rapids of Satan’s Cesspool; the ethnographer aims to show how experiencing the crash of the wave can trigger meaningful insights not conveyed by the colored ink.
Travel, like reading and writing, results in a sometimes uncomfortable intimacy. A companion’s smelly shoe or overly long description of last night’s dream can intrude on one’s pleasant sojourn. As I write, a droning voice in my head tells me that my efforts to present a likable patient won’t translate well through my attempts to portray a trusty narrator. I worry I’ll say something that rubs my mates the wrong way. Maybe I’ll make a bad joke I wish I could take back, or I’ll seem too sensitive and expose too much. Maybe something I say will reveal a not-so-pleasant side of myself.
I’m not an angry person in general, but the feeling of betrayal that washed over me when I found out about my misdiagnoses sent my conflict-averse and easygoing nature skittering to the brink. The snubbing of my concerns, making me feel like an idiot for even raising them, came at such an absurdly high cost to me and naught for those dismissing me. It’s tough not to take that very, very personally, even though it happens all the time. The same part of me that never called my doctors out to their faces does not want you, my reader, to see me as hostile, ungrateful, or less deserving of survivorship than much brighter and kinder people who have died. Part of me is terrified to admit my ugly thoughts, occasional death wishes, and the fact that I sometimes have to bench press my frustrations away. At least a couple of readers will locate my problems in the lack of a stiff upper lip.
Having been raised as a reticent Canadian, I’m already tempted to recant the nonfictional status of this book and ask you to read it as fiction. Long after my diagnosis, even still, I tell as few people as possible that I’m a so-called survivor. It would be easier to play the role of a detached guide.
But the world outside wedges open the door and makes it difficult to stay closeted. At a party I attended last June, the head of our organization for women diagnosed under the age of forty with cancer read the names of those in our community who had died in the last few years. The reading of the seventeen names felt more like a memorial after a bombing than the usual way of understanding death as an individual, personal tragedy. Yet we did undergo a sort of massacre as, every month, we read email after email about those who suddenly landed in the hospital as cancer returned and pinballed from one vital organ to another, and as we attended funeral after funeral. That contradiction—the exaltation of community and connection against the grief that emerges at so many cancer events—still feels like a good solid kick in the spleen.
For this reason, we need to delve into cancer discussions that we’d rather hide from. And so, after looking long and hard from the canoe for seven years, I’ve leapt into the white water. I invite my readers to explore with me the very things we (read, a slightly lonely “I”) most want to shy away from.
The stains on my passport do not provide me with a global or objective view of the cancer machine. However, they do reveal the route I’ve taken through a titanic subject. Each chapter in this book began from a curl of feeling—like a lock of hair pinned to a voodoo doll. I worked my way backward from the discomfort to decipher the structures that organized it. Walking down the hall for chemotherapy at the hospital, I tried to pass as a doctor. Anyone could tell that the slumped-over sick people crowded in the waiting room were the real losers. I noticed people, pinioned between experts’ uncertainty and the social pressure to be optimistic, resorting to small forms of resistance. Although I was still a citizen of the first world, I fell out of sync with how my generation moved through their lives.
A more pernicious companion than my own skepticism joined me: the constant thought that things could have been otherwise. Anyone with invasive cancer might have had a higher chance of survival had we been diagnosed sooner, or so claim the ubiquitous ads for early detection. Over the decades, early-detection awareness has seeped into the public’s often half-shaped ideas of cancer as well. One of my retreat friends with terminal ovarian cancer learned to respond to the constant, distressed inquiry, “But didn’t you have a Pap smear?” Her community wondered whether her imminent death wasn’t her own fault, whether their own medical obedience could save them from her fate. Discussing how she took that question as a nearly physical attack, Alice fretted, “A Pap smear has nothing to do with ovarian cancer.” The fact that a Pap smear would have done nothing for her doesn’t quell the search for an alternative world in which she might had survived, just as Lerner insists that chemotherapy might have worked for Kushner.
Historians have a word for the surrogate world that would have resulted from a mere tweak in the course of events, such as an earlier diagnosis or no exposure to a carcinogen at all. The “counterfactual” offers a window into imagined, possible worlds. Counterfactual historians fill tomes with these alternative histories: Booth’s pistol misfires and President Lincoln lives on, or Adolf Hitler dies at birth. This little nook of possibility for a different life can become a living, breathing escort in the cancer world. It takes up residence right at the base of your throat. For example: everyone knows that we are all exposed to a torrent of carcinogens every day, yet no one can tell you which, if any, caused a particular cancer. One “races for the cure” while knowing that the production of the race T-shirts required the use of carcinogens. There may be a cure someday, and you may live to see it, but only if you can work out the right course of action—a certain drug, trial, diet. Someone might be held accountable for a misdiagnosis or an exposure, and for that, you might yet win a compensatory award from a court of law. But in the grand scheme of things, cancer is no individual’s fault.
Cognitive dissonance—or the mental pressure created by opposing truths held in tandem—happens precisely when one tries to hold together the factual and the might-well-have-been-or-still-be-otherwise-if-only counterfactual. One can’t live in a world in which every detail could have been, or could yet be, otherwise. One can’t actually vote while psychically living in a world in which Lincoln hadn’t been shot and the Ku Klux Klan had not murdered generations of African Americans. One can’t pick up the painkillers or apply for Social Security disability insurance when lost in a world in which one’s lover hadn’t been diagnosed.
Cognitive dissonance, a defining feature of cancer, can’t be resolved, only spun out and examined. No one knows what causes any individual cancer, although we have suspicions and part-data, and certainly we could be doing much more to address the National Cancer Institute’s claim that two-thirds of cancers are caused by environmental factors.40 Accepting the contradictions of cognitive dissonance comes with a certain optimism—you may survive!—but it also carries the potential for unmooring. The loopy feeling brought on by a cancer diagnosis has many causes. Somewhere, nowhere, and everywhere, cancer hides in plain sight. We don’t want to admit that it runs through so many of our institutions and holds together our ways of life. Who can blame us?
A friend and colleague of mine, Derek Simons, writes about intersections—real intersections with traffic lights and painted lines. At any moment in an intersection, steel and rubber traveling at high velocity can come into conflict with delicate flesh. Simons examines the ways in which physiological, technical, aesthetic, and political vectors coincide with the material conditions—the concrete, the asphalt, the speeding projectiles—that both necessitate and obviate these injurious collisions. He refers to the dissonance between the taken-for-granted quiddity of road violence and its savage consequences as an “elegiac politics.”41
The dissonance between the total social fact of cancer and the ugliness of the suffering it causes offers an opportunity for an elegiac politics. The suffering ultimately needs to be okay not because it is fine, but because it happens and thus needs to be acknowledged. I want to usher cancer and its identities out of the closet and into a space not of comfort, or righteous anger, but of mourning, a space where the material humanity of suffering and death informs communicative and collective action.
ON STEROIDS
After my treatment, as I distracted myself with afternoon TV and wondered if my career lay in ruins, the absolute last thing I wanted to do was write a book about cancer. I wanted to move on. But the terms indolent and relentless that doctors use to describe cancer also depict the treatment hangover. Seven years later, I still can’t eat curry or drink rooibos tea—let alone watch afternoon TV—without feeling that wave of nausea. I spend thousands of hours and dollars each year on cancer-related issues. And it could have been much, much worse. The scholar’s antidote to confusion lies in research, and my study took on an insatiable quality.
First, I read every history I could find. I read about early cancer treatments. James S. Olson describes the women who had access to the latest, most aggressive breast cancer treatments of their age as “a sisterhood of guinea pigs.”42 Their treatments involved the removal of the adrenal and pituitary glands, the cracking open of the sternum to remove the internal mammary chain, cauterization with hot irons, and the removal of ribs, collarbones, and shoulders—in some cases following the discovery of tumors less than a centimeter in diameter. General anesthesia had barely been developed, with doctors and patients alike becoming addicted to the opiate painkillers. Cancer patients—part experimental subjects, since they were dying anyway, and part people desperate enough to try anything—were given massive doses of radiation and injections of radioactive elements to see what effect these might have.43
Progress, I found, isn’t at all clear-cut. Cancer patients were sometimes caught up in larger professional turf wars, such as that leading to the development of massive radiation labs. While difficult to discern in the present, one can see from the history that far from a lucid teleology of discovery, science is a cultural project that takes place within political and ethical infrastructures.
When I couldn’t fully locate cancer in historical study, I expanded my search. I attended oncology conferences all over the country. I also reviewed hundreds of trial reports to understand the current research, who funds it, how it fits within a history of oncology research, how it is interpreted and communicated, and, just as important, what is not being done. I also craved other kinds of first-person accounts.
My research took me to an archive in rural Maine where I pored over marine biologist Rachel Carson’s tiny cursive. Written as she was dying of cancer, her letters to a close friend describe her fear that her disease would discredit her research on the environmental causes of cancer and that her work would be dismissed as advocacy rather than studied as scientific research. I drove out to Carson’s oceanfront property and snuck down her driveway to see where she had written her bestsellers, The Sea around Us and Silent Spring. I also went to Harvard to forage through the letters and studies that Rose Kushner collected in the 1970s. I wanted to know how other people had done it—how they understood cancer, how they lived and died with it.44
I amassed memoirs and graphic novels; plays and art; patient pamphlets and public health websites; histories of cancer advocacy, the insurance industry, medicine, and allied professions. I scrutinized the story of how the radiation research carried out in Marie Curie’s tiny lab and resulting in her death progressed into contemporary treatments. I studied the medical, legal, and sociological literature on medical errors, how physicians, hospitals, and insurers handle them and what recourse patients have had in such cases. I also examined other diseases, and sought to fit cancer within a broader context of how medical anthropologists understand disease. I was at a buffet in Vegas: ravenous, stuffed, and empty all at the same time, somehow still unsatisfied.
Several experiences, both during and after treatment, helped with that feeling somewhat—at least they helped me to accept the raggedyness of the cancer I was finding in these places. I attended six weeklong retreats, as well as several shorter ones, and support group meetings. I listened as people tried to pick up the shards and fit them back into life stories. I became an unwilling funeral junkie. I swam, ostensibly for “women with cancer,” though I couldn’t get up the nerve to ask anyone to sponsor me, so I just paid the fee and did my laps. I still have the bag: I swam a mile for women with cancer, as if all those “women with cancer” suddenly turned into charity cases who need a mile of splashy (and not in a good way) front crawl.
I wanted to believe I could cobble together an adequate treatment if I just looked hard enough. Short of that, my internal scholar has heavily pressured me to box up my findings and observations to provide, if not The Solution, at least An Explanation. But if the plot has a pudding, it molds to the disconnects, the cognitive dissonances, that make the disease, let alone a cure, so elusive. The chapters that follow examine how a culture that has relished such dazzling success in every conceivable arena has twisted one of its staunchest failures into an economic triumph. The intractable foil to American achievement, cancer hands us, on a silver platter and ready for dissection, our sacrifice to the American Dream.