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”)