80-90

Dr. A returned my phone call, but not until I was already in the hospital and out of range of cell signal. On the annexin-1 genetic marker for HCL, I’m not familiar with it, he says, but the hematopathologist is very confident that HCL is what you have.

This does not exactly boost my confidence in Dr. A. Remember, only a handful of articles on HCL come out every year. If you had a patient with a rare disease, and you only had to scan 10 or 15 articles to brush up on the latest research, wouldn’t you do that? Exactly how much does he know about hairy cell? The annexin-1 article is three years old, and it’s from The Lancet, the British equivalent of the New England Journal of Medicine. Not exactly junk science.

Here’s my fear. To cancer specialists, the odds in my case look really good. Hardly anything else gets an 80-90% remission rate. So to them, I’m in great shape, an easy case, not to worry. (Dr. A even talked about a “cure rate,” a phrase that should be banned from cancer wards.) They’ve got great stats. They’ve got a protocol.

But I’m not a statistic. To me, their 80-90% is like lining up 10 people in front of a firing squad, then announcing cheerfully Excellent news! We’re only going to shoot 2 of you! How would you react?

As for protocols: I’ve been thinking a lot about standards recently. (You can download my writing on this at my website.) Standards and protocols are technopolitical settlements: temporary, rough agreements about how to understand something, or do something, or make something. 120V AC, TCP/IP, HDTV, FM, AM, QWERTY, HTML — all great things, important steps toward valuable infrastructure. All also things about which people fought; argued; won and lost colossal economic, intellectual, and personal struggles.

If standards and protocols settle controversies, ipso facto they help people stop thinking about something, at least until they’re forced to think about it again. In science and technology studies, we call this black-boxing. It's very valuable. The ability to stop thinking about complicated choices by putting them into a black box that cranks out a decision automatically — we need this to get by, in an ultra-complicated world, with our incredibly limited bandwidth (attention) and low-reliability, kilobyte-size memories.

Standards and protocols are especially useful for things you don’t encounter very much. Such as a rare disease with a pretty good treatment plan. The hematopathologist is very confident — but the ANXA1 test is nearly 100 percent accurate, if the research is to be believed. Which sounds better to you: very confident, or 100 percent accurate?

When Dr. A sees me on Monday morning, I’ll be packing a stack of article abstracts. And my question will be how much Dr. A is willing to learn — from me.