CAPTAIN’S MEDICAL LOG:

Stardate 1/052307 ... It’s been over a month since our last posting – but the time hasn’t gone to waste. Without ever being admitted, I’ve spent more time in the hospital so far this spring than most doctors. I’ve decided that my journey through the American health-care system has been so Kafkaesque that maybe I can do some good by documenting it somewhere – and I believe the Web is now the best and most immediate place to publish anything. There’s some hope that once it’s online, it will always be there, somewhere. If we’re careful, the Web will be the single greatest tool ever created for the spread of freedom, democracy and truth throughout the planet.

But back here on Earth, my recent reality has been fueled by infusions and pills. Just managing all the drugs that I take – making sure I don’t run out of any, gathering the proper prescriptions and simply sorting them out three times a day – is a full-time job. I carry around single-spaced print outs of the latest list of drugs I take daily just in case a nurse, doctor, druggist or ambulance attendant might ask if I take any drugs. It’s come in handy on more than one occasion.

And back here on Earth, I’m exactly half-way through a series of infusions of mega-doses of Rituxan. Since Rituxan is a monoclonal antibody I’m not getting chemotherapy but they are pumping into me doses of 800 mg/l three times a week for four weeks. Each infusion lasts about four hours. I won’t bore you with details of how Rituxan works (although it is fascinating) or how expensive it is (although at 50 large/dose it is scary) or what the usual dosage is (although at 350/week it is much less) -- but all this is easily available with a Google search.

The present story began just before the New Year with a simple case of diarrhea that just wouldn’t go away. I’ve got three active doctors and none was very interested in my bowel movements. Even a persistent sinus infection failed to peak their interest. They were all fascinated however with the swelling in my legs. My skin there was so dry it cracked and wept the fluid that my lymphatic system was no longer dealing with. I got the problem in my right leg under control but my left leg refused to respond to treatment and wept so much that my sock and shoe were soaked through after a few hours. It was a pain in the ass but I could deal with it with gauze and ace bandages. It was the pain in my ass that bothered me. Finally, on April 10, I convinced my oncologist to take a stool sample, a test that was actually first recommended by Dr. Kramer, who happens to be my wife and an uncanny diagnostician. (She’s good looking too.) I won’t describe here the actual procedures suggested and used to collect this sample because I’m saving that for the plot of a 22-minute situation comedy one day.

Stardate 2/060507 ... My last dose of Rituxan is tomorrow. I’m so full of it that it’s about to come out of my ears. My leg is weeping again but I feel real good and optimistic about the future. Back to our story …

The results of the stool sample came back a week later and revealed that I had a staph infection. Dr. K, my steadfast endocrinologist, exclaimed “That explains everything!” but Dr. A, my oncologist and the Wizard, the world’s foremost authority on my kind of leukemia, were less impressed. Dr. A wanted to start immediate full-blown chemo – something I didn’t want to do – and the Wizard actually said I was too sick for chemo and should have radiation before a dose of it. But a radiation oncologist at NYU refused to participate in it because he didn’t think I was sick enough.

That sent Dr. A and I back to the drawing board and the good doctor, knowing how I felt about chemo, brought up a suggestion I had made a few weeks earlier -- a regimen of Rituxan alone. The Wizard concurred. So here I am. An Independence Day Cat-scan will determine if we guessed right. (Incidentally, a 10-day course of antibiotics cured the nasty staphylococcus aureus bacteria and almost everything that was bothering me.)

I feel pretty good except for incredible fatigue and achy joints. A nurse who has had patients who have gone through mega-dose Rituxan told me last week that those symptoms were exactly what other patients experienced. That news actually made me feel better.

I think I’ll celebrate the end of this round of infusions by having pizza for dinner tomorrow. Not any pizza but a pie from Brickoven Pizza in Kauai, Hawaii, producers of what’s maybe the best pizza in the world. No kidding. It arrived today from cousins Dana and Sean. It’s arrival is one of the nicest things to happen to Marcia and I in a long time. Guys, just the thought of what you did makes my day. It’s what family is all about. I’m proud I’m part of yours. Thanx.