The making of a modern disease. Steven Shapin in The New Yorker
This is how it starts. Carla wakes up one morning feeling that something is wrong. She has been having headaches, but not of the normal, take-a-pill-and-relax type. These headaches come with a sort of numbness, and now she notices some other things that aren’t as they should be. There are bruises on her back that she can’t explain; her gums have been going pale; and she’s very, very tired. She goes to her doctor, but he can’t tell her what’s wrong. Try some aspirin, he says; maybe it’s a migraine. The aspirin doesn’t help, so she finally asks for some blood tests and soon she winds up at Massachusetts General Hospital, in Boston, where a young and talented physician gives her the preliminary diagnosis: acute lymphoblastic leukemia (A.L.L.). Carla knows nothing about lymphoblasts, or why she’s going to have to have a bone-marrow sample taken, but she knows about leukemia. It’s cancer of the blood. She’s terrified, and she may not be in a state of mind to take in the oncologist’s reassurance that A.L.L. is “often curable.”
Carla now enters not just a cancer ward but a cancer world. The ward is what the sociologist Erving Goffman once called a “total institution,” like asylums, armies, prisons, monasteries, and Oxbridge colleges—an institution that strips you of your identity and equips you with a new one. She’s given a case number, a bracelet, a hospital gown. Some of her physicians will know her name and what she was before becoming a cancer patient, and some will not. Her chemotherapy ward is an environment made sterile in order to protect her soon to be therapeutically devastated immune system from infection, so her relations with family and friends are reconfigured along with the rhythms of her days and weeks. She’s now a case.
The oncologist in the story is Siddhartha Mukherjee, the author of “The Emperor of All Maladies: A Biography of Cancer” (Scribner; $30), a history of the disease and of the attempts to describe it, explain it, manage it, and cure it, or just to reconcile its victims to their fate. It is a personal story, too, an account of the author’s own “coming-of-age as an oncologist,” and its historical narrative is crosscut with Mukherjee’s present predicaments. He is sure that he can do much more for his patients than the physicians of the past, yet he recognizes his fellowship with his medical ancestors; he knows that he shares many of their hopes and frustrations. At the same time, he wants to understand what his patients share with their ailing forebears and what is peculiarly modern about their predicament. He sees that cancer is a world unto itself; that Carla is now part of this world; and that he is part of it, too. For cancer patients and their physicians, the cancer world seems to expand to the whole of experience. As one victim of a muscle sarcoma told Mukherjee, “I am in the hospital even when I am outside the hospital.” More: