My Life with Cancer

As my chemotherapy continued through the spring, my spirits lifted a bit. One of the worst parts of cancer is the loss of control, the sense that you have no recourse when your body betrays you. That's why nutrition and hygiene became so important to me in that period. For the first time, I actually understood how someone could develop an obsessive-compulsive disorder involving repeated handwashing. My own insistence on it was beginning to drive my family nuts. But I was determined to stay free of infection when my immunity was down during treatment. Chemo brought out the warrior in me, and the obedient servant. If the doctor suggested drinking a gallon of fluids on the first day after treatment, I didn't drink three and three-quarters quarts. I drank the full gallon, for maximum control, or the illusion of it.

My luck began to turn when I found I was avoiding the worst side effects, with the help of a dozen pills a day. I suffered fatigue, bone pain, anemia, total hair loss (my family said I looked like an egg), hemorrhoids, numbness and foot cramps, but thanks to anti-nausea drugs, which I popped prophylactically at $70 a pill, no vomiting. I missed my 25th college reunion but made the 2004 Democratic convention, with syringes in my bag and a catheter in my chest that my wife nervously learned to clean and dress. Cancer tests any marriage, trying to work tiny cracks into fissures. But as I slowly checked out of my fog, ours prospered.

By this time I had fashioned my own daily recovery plan, which I dubbed Herman. The H stood for humor, a few minutes each day with "Curb Your Enthusiasm" or Will Ferrell or an Ian Frazier story or a friend who would make me laugh. E was—and is—for exercise, which may not fight cancer but clears my head. R represented religion. At the depths, I tried to read something about Judaism or talk to God a little every day, though like a soldier escaped from the foxhole, I've backslid since. (Religion often morphed into superstition, as I avoided the sweater I had worn on the day of a bad test result and refused, long after remission, to refer to my cancer in the past tense for fear of tempting a recurrence.) M was for meditation, which with the help of my friend Barbara helped calm me for a time. A was for attitude. Studies show no connection between a good attitude and reducing tumor size and I can't stand the way our therapeutic society makes people feel that cancer is their own fault because they weren't more chipper. But mind-set is important. By chance, I was already at work on a book about Franklin D. Roosevelt, and the writing offered a useful distraction from cancer. His upbeat attitude after being stricken with polio was inspirational for me, and made me wonder, What Would Franklin Do? N stood for niceness to my family. They bore the brunt of my irritability, which I tried to reduce, not always successfully.

As I learned about myself, I also learned a lot about medicine. Most cancer doctors are awe-inspiring in their humanity and dedication. They make, say, hedge-fund billionaires (not to mention journalists) look puny and insignificant. But I also found oncology full of the same mammoth egos and petty jealousies that plague any high-powered field. Doctors from competing institutions are often so competitive that they talk to each other only a couple of times a year at conferences. They do lab work on parallel tracks instead of collaborating. And under pressure from hospital lawyers, they frequently even refuse to share cell lines with other qualified researchers, which retards progress toward cures and is clearly unethical. Thanks to a wealthy mantle cell lymphoma survivor, ours is one of the first subsets of cancer to establish a consortium to get top experts in the field to exchange ideas regularly. Every cancer should have a consortium.

And every cancer doctor would do well to recalibrate on occasion the balance he or she strikes between science and hope. While the survival odds they offer might be technically accurate (X percentage with Y cancer will survive five years), they are often misleading and sometimes unnecessarily cruel. Patients and families obsess over these survival-rate statistics, but they reduce the countless variables of a person's genetic makeup and environmental exposure to a number, which is cold and often phony. Depending on the individual (whose age is usually not even factored into the statistics), a 50 percent chance of survival could easily be 80 percent—or 20 percent. Moreover, few patients understand the meaning of the term "median survival." That simply means half live less time and half live more—perhaps much more.

Dr. Jerome Groopman, the Harvard Medical School oncologist who became my informal patient advocate (which every patient needs and few get) and later my indispensable friend, told me that he wished he had a nickel for every patient he knew who was told he had an "incurable" disease and is still doing just fine. Groopman's new best seller, "How Doctors Think," explains the self-protective psychology behind the pessimism of so many doctors, who don't like to view the death of a patient as a comment on their abilities. So they resort to saying it's a "bad disease" or "incurable." What doctors should say—and often do—is that a particularly challenging cancer might be incurable now, but if we can keep you alive a while longer, a cure might come, as it did for Lance Armstrong's testicular cancer. Patients need to do their part by enrolling more readily in clinical trials, which most avoid. And they should stop pressing their doctors for an exactitude that doesn't exist.