Holding pattern

Countdown: 31 days to the NCI clinical trial.

• Hemoglobin 10.8 (WHO normal 14.0-17.3)
• Absolute neutrophil count 1.0 (normal 1.4-7.5)
  
• White blood cell count 1.6 (normal 4-10)
• Red blood cell count 3.06 (normal 4.5-5.9)
  
• Platelet count 94 (normal 150-450)

Down and up and down again. They bounce around, says Dr. B. This week's test: a large-ish drop in hemoglobin and RBC, which accounts for the increased fatigue, headaches, and occasional lightheadedness. Having good days and bad days now. I'd say I feel OK about 85-90 percent of the time. Cutting back on work and preparing to wind down much more. But still going strong on most fronts.

Fortunately immune counts are still OK. ANC at 1.0 is considered above the threshold for treatment in the NCI clinical trial and no major risk for infection. Lymphocytes are down to 4.0 (normal 0.8-5.0) — low, but I've been that low before, and according to Dr. B there's no clinical consequence.

All my counts are still higher than when I was diagnosed in 2007. Then I went 26 days between diagnosis and starting chemo, so I don't see any problem making it to November 8. The docs seem OK with it too.

Nonetheless, trying to avoid infections at all costs. Lots of handwashing and Purell, not shaking hands so much, getting out of the room if there's coughing going on. It'll be great if I can make it to November 8 without getting sick.

As I start to navigate between the UM hospital and the National Cancer Institute, I am getting worried about falling into the crack between the two systems. UM works great on its own, I know from experience. Don't doubt the NCI does too. But these are two very big, very complicated systems with many moving parts. They're not designed to work with each other, and nobody in one system knows much about how the other one works.

In this trial, the NCI supplies the drugs but UM administers them to me. UM has to supply blood tests, and occasionally blood and bone marrow samples, which get Fedex-ed to Maryland. (Did you know you can Fedex blood samples at room temperature? Just stuff them into a cardboard tube, packed in tight so the tubes don't break. No idea why that doesn't ruin the samples.) Every transfer between the two has to work, and somebody — probably me — has to ensure they do. I dumped the blood samples into the Fedex drop box myself last week, wondering what would happen if they missed the pickup. But it worked just fine. Still, walking out of the hospital with a bag of blood felt truly strange.

Then there's the Third Man, the one I've been blissfully ignoring until now: my insurance company. I have no idea, yet, how that plays into this scene. From the company's point of view, a clinical trial is probably great; the trial bears almost all the costs, which in this case is going to save the company at least $100,000 at the discounted price it probably pays for Rituxan ($20K a pop at retail), certainly more than that if you throw in all the blood work and the test marathon I'll get at the NCI.