Notes
Index
Introduction
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,