On the Bookshelf: 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.
But you got the drug.
Most medical institutions and insurers are reluctant to pay for new treatments, even if there are good medical reasons to expect that they could improve their patients' chances. I was able to convince my doctors that this was worth a try. The argument was aided by a kidney problem that cropped up that called for Rituxan treatments. They're charging us $20,000 a bottle for this stuff, and I'm getting four a year. But if I wasn't doing it, I probably wouldn't be here very long.
You say in your book that you fought to have special tests. Why?
The standard test to see if the cancer is coming back is a CT scan. But by the time you see it in a CT scan, there are already several hundred million cells, and it's a lot harder to get rid of. I want to know right away if the number's starting to climb. So I argued that I should get a PCR test every other month, which scans for cancer cells in the blood and is much more sensitive. It also costs thousands of dollars. But they agreed pretty quickly on that one, and we have been using it ever since.
Did you peeve a lot of doctors along the way?
Doctors are not in some conspiracy to defraud you or give you bad treatment; it's just not true. They have an overwhelmingly difficult job, and it's sometimes easy to take refuge in a CT scan or let the bean counters dictate what you can and can't do. I was very lucky in having an open-minded doc. But I also had credible arguments. And when I said things that were stupid and they said no, that's wrong, I immediately agreed. It was a pretty open discussion. Even from the very beginning, there was never any reluctance to explain what was going on and why. Sandra initially asked me, "You sure you want to know everything?" And when she started telling me everything, I started having this weird out-of-body experience. It was like a Spielberg movie. That's why having an advocate is so important; Terry wrote it all down. If you're just too distressed with all this, an advocate can ask the questions for you.
So you're really not the patient from hell, but you do think your pushing gave you better medical care. How can your approach help the average Joe?
They're not trivial concepts to understand. I know that. But people don't have to have a MacArthur genius grant to ask questions and try to optimize treatment. Unfortunately, given the state of our medical system, that's going to take some pretty deep involvement. If you're temperament is up for that, you can use this book as a guide. If you want to trust everything they tell you, you shouldn't read this book.
Go through the logic of what happens if you do this, and what happens if you don't do this. Ask them simple questions, and if they don't know the answers, ask them: If you had 100 patients like me, give it your best guess. Anybody can do that.