2004 that a brain tumor recurrence had been growing since 2000, yet no one had passed along the information. He has those original radiology reports, but the doctor left the practice. Jess’s doctor pulled a silicone “practice” breast from the cupboard to show her the difference between a hard lump and a soft lump, diagnosed hers by feel as a benign cyst, and delayed diagnosis by over a year. A freshly minted thirty-three-year-old lawyer I spoke to had waited for six months until the insurance that came with a new job would cover her visit to a doctor. She was diagnosed with metastatic cancer and died six years later.7
Compounding these problems, younger people suffer from an intense “cancer burden.” Often they have few savings on which to draw during long treatments; have young children to support; face job discrimination and job loss; and, if they survive, suffer from a chronic condition that may cost thousands of dollars a year even with insurance. Furthermore, the stereotypes about cancer lead to the profound alienation of young adults, who, often the youngest people in the chemotherapy room, need to cope with the inexperience and misinformation of their friends, family, communities, and at times, even physicians. Few clinical trials focus on young adults, and overall they have poorer outcomes than the older and younger groups with treatments standardized for those demographics.
As with the cancer category more generally, it barely makes sense to consider cancer in this demographic as one disease. Mean five-year survival rates for young adults (15–39) exceed 94 percent for Hodgkin lymphoma, thyroid carcinoma, and testicular tumors. Notable improvement has taken place in acute leukemias, while survival rates for numerous other cancers remain intractably low, particularly when controlling for stage at diagnosis. With metastasis, mean five-year survival in this age group slips to 89.7 percent for thyroid carcinomas, 86.7 percent for Hodgkin lymphoma, 73 percent for testicular cancer, 47.8 percent for ovarian, 31.6 percent for breast, 18.9 percent for colorectal, and 5.9 percent for lung.8 (I examine various aspects of cancer and young adults in other parts of Malignant.)
The nearly complete lack of socioeconomic support that presses those with catastrophic illness entirely out of the system bears some examination, especially given the pivotal role young adults play economically. Having to watch the economy of accumulation from the outside—to decide whether to return to work or stay on Social Security disability, for example—might give new insight into the justifying logics of mortal lifespans in immortal systems.
Cancer itself parodies the capitalist ideal of accrual through time, and people with cancer inhabit its double consciousness. In the cancer complex, the relations among cell division, financial accumulation, and deferred gratification are anything but linear. For each postdiagnosis individual, the story will go one of two ways: You will have a recurrence, or you will not. You will die of cancer, or you will not. You will be ill for a long time, or you will not. If you defer your spending for too long, you won’t get to enjoy it. But if you don’t defer . . . well, what if you survive but have spent all your money on a new kayak and a trip down the Grand Canyon? What if you want to go back to work but can’t because your employer found out you had cancer and fired you? What if you can’t get insurance because of preexisting illness? What if your small business didn’t survive the time you had to take off for treatments?
When I was in college, my dad offered me ten dollars to read a book called The Wealthy Barber.9 In this book I learned the value of starting to save early in one’s life. The book claimed that the barber or secretary who began working and saving at age twenty was far better off than the teacher or nurse who began working at thirty or the lawyer who spends all her money on Pebble Beach vacations. That extra ten years of working and saving, even with a low salary, adds up some forty years later to a princely sum on which to retire. The book aimed to show how people who live for seven or eight decades can hook into market systems that grow for a couple of centuries to their advantage. These systems value modest barbers who know how to play the system more than spendy lawyers who don’t bother. The trick lies in time—specifically, in having a lot of it during which to watch one’s savings grow inside the market.
The morass of young adult cancer, the confusion and dislocation, can be read as a collision in modes of time. In an aspirational, personal, and normative timeline, one supports one’s kin. In losing one’s relation to that, an immortal timeline ticks by as one misses the chance to put aside savings and get that promotion. These two temporal modes can compete and destroy each other with even the smallest trip-up in their assumed alliance.
The idea of lifespan justifies the pressure on young adults. After all, when else would one save for retirement or have young kids? The obviousness of this question indicates the centrality of the larger social fantasy that holds together the economic necessity of one’s “productive years” in which one is assumed to be the most attractive, the most fit, the most able-bodied of one’s life. Yet precisely when people have to drop out of those years because of the brute bad luck of illness, one finds, instead of the expected social supports, people holding their own fundraisers or websites auctioning massages and hula hoop lessons to pay for chemotherapy. As one twenty-nine-year-old who has been living in the cancer complex for fifteen years put it, “A fundraiser is where you invite people to a big fun event, serve great drinks, and do everything possible for them not to think about cancer.”10 You do want people to feel good and strong so that they will open their wallets, and who doesn’t like good clean fun?11
GAME FACE
When it comes to interpretive rubber meeting the symbolic road, nothing beats an advertisement featuring cyclist Lance Armstrong (fig. 5). Armstrong inspired a generation of cancer survivors through his charisma, his cycling victories, and by pouring millions of dollars into his nonprofit, typographically loud, LIVESTRONG organization. To be sure, he cuts an ambivalent figure, both having played the cancer card in extremis to veer attention away from the numerous performance-enhancing exploits that led to his being stripped of seven Tour de France victories, and having funded needed cancer research. Armstong and cancer cultivated a mutually beneficial relationship, partly demonstrated by the willingness of many cancer survivors to support him even in his fall.
FIGURE 5. In 2006, American Century Investments partnered with Lance Armstrong to create a series of widely advertised Live Strong term funds. The company continues to maintain the Live Strong funds, despite Armstrong’s ignominy over performance-enhancing drug use.
In 2006, American Century Investments (ACI), a private firm managing more than $100 billion in assets, entered into a partnership with LIVESTRONG in which ACI donates to the charity part of the profits from a series of life-cycle mutual funds, “in which the type of investments vary according to the age of the investor.”12 As ACI boasts on its website, “LIVESTRONG Portfolios make investing for retirement . . . as easy as identifying the approximate date you plan to begin withdrawing your money.”13 The pun of “life-cycle” aside, the magazine ad highlights Armstrong’s role as a translational figure for the nexus of industry, cancer, and humanitarianism.
Armstrong claims survivorship as a key identity, reiterating continually that his greatest success and pride lie in his having survived testicular cancer. In his autobiography, It’s Not about the Bike, Armstrong describes his active search, when diagnosed in 1996, for the best care available to overcome his prognosis.14 He settled on a doctor who offered a then-new regimen that revolutionized treatment for testicular cancer, turning it from a high-risk disease into a largely curable one, even in its metastatic iteration. The coincident timing of his diagnosis and this new treatment underpins what he portrays as his own agency in finding medical care—another inspirational aspect of his cancer survival story. Armstrong’s story is misleading, however, in that it overemphasizes the role of patient agency in the success of cancer treatment, a view that correlates with the advertising messages of cancer centers and, well, banks. It also overestimates the curative potential of treatments for most cancers, though we’d all like to believe in these inflated claims. And it propagates the
