The Patient From Hell
Stephen Schneider is one of the world's leading experts on global warming and a recipient of a John D. and Catherine T. MacArthur Foundation genius grant. He revels in analyzing complex data and explaining it in simple fashion, as he often testifies before Congress and the United Nations regarding global warming. When he was diagnosed with a rare form of cancer four years ago at the age of 56, the Stanford University professor quickly realized that he was going to have to apply the same analytical and communications skills to saving his life. His new book, The Patient From Hell (Da Capo Press, $25), explains that battle. He talked with senior writer Nancy Shute:
You found out you had cancer talking to your doctor on a cellphone, while waiting for a plane to take off.
I'd had an enlarged lymph node under my arm for several months. I thought this would just be minor. When my doctor told me I had mantle cell lymphoma, I was on the plane and I couldn't even look it up on the Web! Is this one of those cancers they can fix? All I knew is that lymphoma is not a good-sounding word.
Then what?
At the very beginning, when one faces something dread, after you get finished with the "woe is me" and "why me," [you need] to figure out: What are they doing to treat this disease that works? And what are the consequences of it working? You don't want the cure to be worse than the disease. I wanted to know about every option I had. My wife, Terri Root, and I spent hours and hours researching on the Web. The more I learned, the more I realized that I had a very rare disease for which very little data was available. This wasn't a disease that had been treated for 25 years. We didn't even have results from a clinical trial. My doctor, Sandra Horning, said: Don't read the Web; it will depress you. What we're doing here is too new.
How did you use your climate-research skills?
In climate, almost everything important happens in the future, for which there are no clinical trials, no data. But we do have process knowledge. We know how the system works. All of us in climate science have just one patient—the Earth. Every time there's a volcano, there's a solar flare, we look at the "patient" and see how it responded. Over time we can construct a theory of how it works, from which we can construct a model with some predictive capability. That's not a common way to think in medicine. I'd say, you don't need to do a clinical trial to know how best to treat the patient. And they'd give me skeptical looks.
Was it a problem when you wanted to take a new cancer drug as maintenance therapy, which no one had done before?
Most patients relapse with this disease. Rituxan, a monoclonal antibody, binds to the B cells in the immune system that are dividing out of control. I took Rituxan as treatment for the acute phase, and it worked great. I figured if you give people Rituxan as maintenance therapy when they're in remission, they'd have a lower cancer cell count. I'd ask the doctors: How many patients would have more cancer cells with maintenance treatments relative to no treatments? Probably nobody. How many would have fewer cancer cells? Probably most of them. So you already know the answer. But, they'd say, we don't have the data. They weren't using process analysis.
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