Commitment

In the hospital right now, waiting for the Home Medics to deliver my pump and chemo supplies to the nurse so she can hook me up. It’s 2:30.

We got here at 8:45 this morning. They took a blood draw through the PICC (so no needles; very convenient.) Then we saw Dr. A for the first time since the diagnosis.

Reassuring, and illuminating. The CT scan results hadn't come back at the beginning of the visit, but they arrived halfway through. My spleen is enlarged, at least a little. The section he measured (right there in front of us, using a “ruler” on the screen) was 13.5cm; normal is 12. He also said that 10-15% of HCL patients don’t have enlarged spleens. I hadn’t read that myself, but it’s possible.

So my case is still atypical, but at least more indicators are hitting the mark. Fibrous, non-aspirable bone marrow. Flow cytometry positive for HCL, except for the CD10 expression. Cell morphology positive. And now a slightly enlarged spleen — not the enormous, painful spleen most people get, but it still points in the right direction.

I told Dr. A about my background in science and technology studies, a bit about my research. Then I described my reading over the last week. Dr. A said you might know more than I do about hairy cell now. I have to treat over 300 different diseases, but you only need to know about one. Check, right answer.

I gave him the Lancet article on the annexin-1 genetic marker test for HCL. He had not seen it. But he also wouldn't know about it anyway, because that’s diagnostic stuff, and that’s not what he does. The degree of specialization, and the disconnection it creates, astounds me: I think I’d have trouble treating a patient based on somebody else’s diagnosis if I didn’t know exactly how the diagnosis was reached, what could be wrong with it, and how it could be better. Dr. A promised to show the article to the hematopathologist and get his reaction. But he also said that UM would not do the test if it's not FDA-approved and commercially available. (I hadn’t thought about FDA approval for diagnostic tests, but yes, of course they need to do that.) So maybe it’s too new.

I told him about the clinical trials of rituxin, BL22, and HA22. I also told him about the Patient from Hell, who fought for (and won) rituxin maintenance therapy for his lymphoma. Are you interested in these trials? Dr. A asked me, bemusedly. I told him I was, but only after we see what happens with the first-line 2-CdA treatment. If we get a complete remission with 2-CdA, I can afford to wait and see — let the new drugs work their way through the system, find out about success rates and side effects, then decide if the disease ever returns. About half of all patients don’t get a relapse, or at least not one they die of. Either they die of something else first, or the disease doesn’t cause symptoms and doesn’t have to be treated.

Dr. A nodded vigorously. He doesn’t believe it’s possible, or even desirable, to try to eliminate all the cancer cells. A few new cancer cells grow in our bodies every day; the question isn’t whether they’ll be there, but whether they’ll escape the body’s SWAT team, start a cartel, and take over. On rituxin maintenance therapy, he thinks that in the long run they’ll abandon it. Cancers eventually mutate some kind of resistance to all chemotherapy, so eventually they always need a new drug.

Dr. A is a bit of a fatalist. I said this disease very often comes back in 3, 5, 8 years. He said 3, 5, 8 years — who knows what could happen in that time? A car accident, another cancer, a heart attack… You should stop researching this. If the treatment doesn't work, or if it comes back later, then you can start researching it again.

Interpreting him generously, I see real wisdom here. What am I going to do if I still have residual disease? I can worry and research, even though I’ll have (maybe) no symptoms and no doctor would treat me. Or I can stop worrying, get on with my life, and rely on periodic testing to tell me when to worry again. If 2-CdA works the first time, it very often works the second time too. And by then — in 3, 5, 8 years — maybe some new drug will be ready to rock.

All this convinces me of two things. One, my diagnosis isn't perfect, but it's reliable enough that I can stop wondering about it. Two, I’m ready to commit.

Just in time. Soon the nurse will come to hook up my pump.