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