The Patient From Hell
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.
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