It might be tempting to stop, draw conclusions, and compare different types of cancers. But any such attempt would be immediately stymied. Cancers, for example, are often graded to determine how aggressive they are. Then again, doctors will often tell a patient with an aggressive tumor that he is lucky, since chemotherapy tends to work better on more quickly dividing cells. Although cancers are listed in the registries by the organ that hosts the initial cell division, these categories mislead, since even tumors that start in a particular organ can be a completely different type of cancer. Occasionally physicians can’t tell where a widely metastasized cancer started. Such categories can have significance for detection, though, as witnessed by the recent introduction of the term “below the waist” cancers. This term calls attention to the way that curtains of discretion can affect the spread of the disease and the likelihood that one will seek advice for symptoms that most people don’t want to hear about, let alone talk about.
Already, the statistics of incidence and mortality confuse. Add to this race, stage at diagnosis, time to recurrence, a three-to-four-year time lag in collating cancer data, and the fact that many states do not keep adequate registration records, and cancer becomes virtually impossible to track. And of course, although statistics mark diagnoses and deaths en masse, the actuality of “one here and one there” means that each case alters, for better or worse, the flourishing of whole communities.
To be sure, each cancer comes with its own unique way of torturing people. Some cancers present so rarely that virtually nothing is known about how, why, and when they spread. Others may begin in different organs but attack in similar ways, such as by causing loss of a vocal chord, making it difficult to walk, or changing physical appearance. Two people with random cancers might find solace by sharing similar prognoses rather than the etiology of a disease. Debate rages about whether very early “precancers” should fall under the category “cancer” at all (a question I take up in chapter 7). This debate carries dramatic implications for the statistics, not only in how the data are listed, but for policy decisions that affect screening and treatment protocols that are based on extrapolations from population data.
People with good prognoses die, and people with bad prognoses live, so churlishness about who gets to carry the “real” cancer card can only take one so far. Besides, people who survive benefit everyone facing discrimination and counter the cancer-diagnosis-equals-death-sentence perception. Nonetheless, the very word cancer is so fraught that the fact that the cancer may be tiny and curable can be lost on a patient. Type of cancer can be confusing in another way as well: both Susan Sontag and my friend Jane “officially” died of leukemia, though the leukemia was the result of treatment for other cancers.
In their 1981 book The Causes of Cancer, Richard Doll and Richard Peto list three types of cancer of “outstanding importance” that, as of 1978, accounted for half of all cancers: lung, large bowel, and breast.28 These still remain the top killers, seemingly intractable medical and social issues despite the billions spent on antismoking campaigns, research, education, early detection, and treatment.29
Race offers another way to parse the statistics. Overall, African Americans have more cancers, as well as higher mortality rates.30 Some researchers ascribe this difference to biology anchored in racial characteristics.31 Other studies find that once African Americans have access to screening, their cancer incidence and survival rates become comparable to those of whites.32 Such examples show that the categories used to collect data may be misleading if experts attribute disease patterns to race or age alone rather than considering access to healthcare or environmental factors.33
Risk does not deal fairly. Still, in some ways the risks of getting or dying from cancer can be measured against social status. Educational status matters more than race for absolute death rates. Less educated people are more likely to smoke (by a factor of three) and more likely to be obese. Whole groups of people, depending, say, on who might be eligible for spousal healthcare benefits or which jobs come with benefits, are excluded from healthcare coverage. One person I spoke with who was diagnosed with cancer at the age of thirty-three traces his symptoms back to when he was sixteen. However, as the son of a working-class single mother and then as a contract worker in the computer industry, he had no insurance until he got married at age thirty-three, three months before he collapsed in a subway station, which led, finally, to the diagnosis of his cancer. Minorities who have experienced, or interpreted, discrimination are less likely to visit doctors for checkups or to follow up on health concerns. One study found that nearly 80 percent of nurses did not want to touch their gay and lesbian patients.34 The Mautner Project, subtitled the National Lesbian Health Organization, finds that “lesbians are likely to receive substandard care, or remain silent about important health issues they fear may lead to stigmatization. . . . Lesbians may be one of the most medically underserved populations in the U.S.”35 Another study, one that used actors and scripts, found that given the exact same symptoms and age, women were less likely to be treated with the standard of care that men received, blacks less than whites, and black women were the least likely to receive medically indicated follow-up. This was true regardless of the race and gender of the doctor.36 Systematic discrimination is also disguised by the fact that the cost of medical insurance is the same no matter how actual care received measures against the standard of care.
The statistics, vast enough to argue for the significance of a researcher’s findings, or to claim a political agenda, also serve to shore up a notion of the disease—or the sum of the various diseases—that we implicitly agree to call cancer. The numbers create categories that might be inhabited and battled in terms of odds. Others have found more fluid ways to live with, and inside of, the new versions of time presented by the data. Often, this brings us to narrative.
IT MUST GO ON
Prognostic time demands that we adopt its viewpoint, one in which the conclusion haunts the story itself. Familiar dramatic narratives offer a pleasurable consummation. Knowing from the beginning how a Shakespeare play ends, we can anticipate that end throughout. By disclosing the eventual death of the protagonist in an opening scene of her play W;t, Margaret Edson offers the omniscient opportunity to witness Bearing’s journey into that experience. In this way, the play mimics other artifacts of cancer culture in which endings and beginnings are entwined. The clinical trial report states survival statistics, while the medical malpractice archive documents injuries and deaths. In these archives, the punch line of the future is dissipated, dissolved into the past—we know the end of the story even as we read it from the beginning. The temporality echoes the double action of prognosis: causing and evacuating the terror of a potentially limited future.
Vivian Bearing, W;t’s terminally ill English professor, offers a grammar, rather than a chart, for approaching death. She speaks about Donne’s Holy Sonnet VI: “Nothing but a breath—a comma—separates life from life everlasting. . . . Death is no longer something to act out on a stage, with exclamation points. It is a comma, a pause.”37 The pause indicates the blip between time lines—the one that leads toward an inevitable death, and the other in which there is no death. Amid all the ways to mark illness—the check boxes on forms, the numbers, the wigs, all the things that purport to carry meaning but can as easily occlude it—the comma, for Bearing, carries both significance and mystery equal to impending death. Punctuation provides comfort.
In Donne’s poem, where death merely interrupts two forms of life, punctuation provides the structure of inevitability and the means of mourning. But in its own