Remiss About Remission

Greater cross-cultural awareness of the relationship of illness to well-being may compel us to pay more attention of the important life-changing quandaries of remission in addition to the physical and emotional dimensions of cancer diagnosis and treatment.
04/13/2015 09:56 am ET Updated Aug 07, 2015

Last week millions of television viewers watched the Ken Burns production of Cancer: The Emperor of All Maladies. It is a magnificent documentary film that is based largely upon Siddhartha Mukherjee's Pulitzer Prize-winning book. In the book and the six-hour documentary that emerged from it, we are exposed to the biography of cancer, a tale that encompasses thorough medical histories, poignant descriptions of the failure and successes of clinical research as well as interviews with prominent cancer researchers who give bright forecasts for future courses of treatment. For dramatic effect these segments are inter-cut with a set of cancer illness narratives featuring patients -- and their families -- who represent the social diversity of contemporary America: young and old, male and female, white, black and brown.

The unsentimental juxtaposition of the history of cancer to the human drama that its social presence creates is wonderfully impressive. Even so, what message does this impressive film send to those of us -- more than 14.5 million in the U.S. according the 2014 report of the American Cancer Society -- who continue to live with cancer, who continue to exist is a state between health and illness, who live in what the sociologist Arthur Frank has called the "remission society." Aside from the story of one long-term cancer patient who despite being "cancer free" for more than 20 years, doesn't feel completely "healed," there is little mention of what life is like for patients who are free of symptoms but not cured.

Like most of the 14.5 million Americans who are in some phase of cancer remission, I am profoundly grateful to the dedicated scientists and clinicians who have worked hard and well to improve current conditions for effective treatment and future prospects for cures. It is not difficult to understand the physical and psychological troubles of patients who are being diagnosed with or treated for cancer. Through no choice of their own, these individuals are compelled to face the prospect their mortality -- no easy matter for clinicians, patients or family members. In the six-hour documentary, these elements are filmed with powerful nuance and great skill. It is perhaps much more difficult to try to capture the murkiness of remission, a state in which patients are betwixt and between health and illness.

The much-hyped documentary, which is certain to win great praise and many rightfully-deserved awards, represents mainstream immunological thinking about disease, a system of thought that is consistent with our narratives about health and illness. For most Americans, health is a steady state that illness -- or dis-ease -- periodically disrupts until our immune systems -- sometimes on their own and sometimes with the aid of increasingly powerful targeted medicines -- get us back to a normal situation in which we feel little or no discomfort, in which we are not pondering our mortality. In immunological thinking illness is other -- something that invades our bodies and triggers physical and emotional havoc in our lives. Illness is the enemy that we must be obliterate so we might regain the steady state of health and well-being. In a sense the immunological treatment of illness is a battle, or in the case of cancer, a war that must be waged on many fronts.

In this system of thought if you win the battle, which in the scope of things, is usually the case, you eventually regain your health. If you lose a series of battles, however, you begin a descent into pain, disease and a potentially premature death. Indeed, the last two-hour segment of Cancer: The Emperor of All Maladies, is all about immunology -- how researchers can use the genetic mapping of tumors to design cancer vaccines that trigger immune responses that can annihilate cancer cells. Such a regimen is a powerful way to treat cancers.

If improved treatment is making cancer a more "manageable" set of disorders, and if such "management" has made remission the everyday reality of 14.5 million Americans, why is so little attention devoted to remission in a documentary like Cancer: The Emperor of All Maladies? Why is there not a similarly-hyped documentary on the trials and tribulations of post-treatment depression, of people failing to comprehend your cancer experience, of the unending cascade of friends and family who say "you beat it," when you know that "it" can return at any moment?

These questions force us to confront more fully the social and cultural dimensions of illness and health.

From an anthropological vantage many aspects of the remission experience are counter-cultural. They are more consistent with anthropologically documented non-Western orientations to disease in which illness is not the enemy, but a companion who can step into your life at any moment and unalterably change the circumstances of your existence. In these orientations you take active measures to treat your illness. And if you become a member of the "remission society," you engage in activities that make remission's uncertainties more bearable. In so doing, you accept the limitations that your condition presents and try to live fully within them, an action that can bring to even the most compromised member of the "remission society" a measure of well-being.

As Cancer: The Emperor of All Maladies attests, we have made great advancements in the diagnosis and treatment of cancer, advancements that have ironically produced cultural narratives that tend to limit our comprehension of the considerable social and cultural ramifications of The Emperor of All Maladies. Greater cross-cultural awareness of the relationship of illness to well-being may compel us to pay more attention of the important life-changing quandaries of remission in addition to the physical and emotional dimensions of cancer diagnosis and treatment.