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
