Chemo, again

• Hemoglobin 8.8 (WHO normal 14.0-17.3)
• Absolute neutrophil count 0.82 (normal 1.4-7.5)
• White blood cell count 1.23 (normal 4-10)
• Red blood cell count 2.67 (normal 4.5-5.9)
• Platelet count 121 (normal 150-450)

NIH, day 3. Counts picked up a bit from Monday. Feeling tired but OK.

Gabrielle arrived around 10:30 PM Tuesday, after a delayed flight. So great, so reassuring and important, to have her with me. But the consequence was late bedtime, early wakeup; I mostly don't make it past 6 AM any more. Today it was more like 5:10.

I called Rita, Dr. Kreitman's nurse, on the way to the NIH. Plan for the day: get blood work, see an infectious disease specialist around 9 AM. Induced sputum test at noon, and then, if I'm cleared for treatment, meetings with the clinic staff and randomization. Start treatment at last.

Well that's a long day. In addition to the usual CBC, the blood lab took some "blood cultures," trying to grow the nasty little things that might be hanging around in my lungs without my permission.

Nurse who took my vitals informed me that NIH stands for "Not In a Hurry." Not my experience so far; everything I've done the last two days ran more or less on time, with no more than a 20-minute wait for anything. But now I'm in the clinic, on the 12th floor. Things are definitely different at this altitude.

The infectious disease people showed up a little after 9, as promised. First got examined by a very nice and well-intentioned — but also clearly very green (tentative, overly wordy, unsure of herself 25-year-old) — med student. She took my medical history, asked a lot of questions, probed for anything besides the June bronchitis episode I described in yesterday's post. Nothing else seemed to explain the apparent pneumonia in my left lung. Which I do not feel, at all, in any way. Was cycling a lot all summer, even into early October, no coughing or crackling or anything like that.

I've had a lot of bronchial infections in my life. They started in my 20s when I hadn't smoked anything for years and led a mainly vegetarian lifestyle of monklike purity, at least on the bodily front. There've been years with 2 or 3 of these monsters, coughing my lungs out for weeks. Probably I've had at least one infection like this in 17 or 18 of the last 25 years. Usually they come on at the tail end of an ordinary cold; it descends into the lungs and refuses to come out.

So I'm used to the drill. Take a lot of expectorant, don't do anything to irritate the lungs, eat a lot of fruits and vegetables, drink a lot of water. Usually that regime works pretty well and I'm not feeling sick after 10 days, though often the cough will linger for up to 4-6 weeks.

Next came the NCI Fellow, rough equivalent of a resident in an academic hospital. What a difference in confidence and style. Maybe 5-8 years older than the student, but so much more self-assured. She too couldn't find anything, in either the history or the physical exam, to suggest another explanation than the June bronchitis/pneumonia. Heard nothing in my lungs. But, she said, we have this finding. The CT scan and the chest X-ray both clearly show infiltrate in your left lung. They aren't diagnostic, but we're pretty sure.

What to do? How to tell exactly what's causing the fuzzy patch on the CT? So we'll do an induced sputum test, but we may also want to do a bronch. That's a bronchoscopy; they stick a camera into your lungs and look around in there. That does not sound like a picnic in the park. The fellow and the student consulted with the attending by phone. He agreed with the fellow's plan to bronch me, and they also decided to start treating me for "community-acquired" pneumonia. That means the kind of pneumonia you get outside a hospital, not the ultra-dangerous antibiotic-resistant supergerms lurking in the lungs of inpatients.

We waited around the clinic until noon. Talked to Mike, the first hairy cell patient I've ever actually met, a long-haired woodworker from Redding CA with a gentle presence and a lovely smile. Mike's had HCL for 21 years. Had his spleen removed; that bought him 5. Then he had cladribine and bought another 10. Second round of cladribine bought 5 more, but the third only bought 3. His doctors wouldn't let him do cladribine again. Mike tried to get into the Kreitman trial, but there was a months-long delay in responding. By then his docs had decided to give him rituxan straight up, 8 shots. His counts went up for 3 months, then dropped right down again. 2 months of treatment, $42,000 worth of Genentech-donated drugs, for 3 months of recovery. His platelets are around 35, so he can't work; Mike could bleed to death from a shaving cut. Finally he got into a Kreitman NCI trial, a different one from mine, testing bendamustine plus rituxan. Small trial so far, but 5 out of 6 patients already achieved complete remission on this plan.

Good luck, Mike. Live long and prosper.

Noon, the induced sputum test. You inhale saline mist for 20 minutes in hopes of irritating your lungs enough to cough something up. I went the full 20 minutes, with Gabrielle reading The Collectors of Lost Souls out loud in lieu of horrible daytime TV. Nothing. Not a single real cough.

Lunch, back to the clinic at 1:30, wait. Around 2:45 it was our turn. Another NCI Fellow, confirmation of everything in my record. Then Kreitman and Rita came in too. The moment of truth. Drum roll, as Rita said. They decided they can start treatment despite the pneumonia, but they want the bronch. That'll happen on Friday. Signed consent forms and Rita went off to randomize me. It's a blind process; they have no control over how it happens. They don't even know how it happens. They send off a form to an office somewhere else in the hospital, wait half an hour or so, and the forms come back with a randomization.

Over an hour later Rita came back. Conclusion: I'm in the delayed-rituxan arm. So I get cladribine now, and in 6 months, if I still have detectable disease, I get 8 weeks of rituxan. (Since my remission on the first course of cladribine was only partial, chances are near 100 percent that I'll get the rituxan.) It's physically plausible that this is the best arm to be in. Hairy cells continue to die off until the 6-month mark. Since the rituxan can't penetrate clumps of hairy cells, it may be best to hit them when their numbers are smallest. Wipe out the stragglers.

Off to the day hospital (closes at 8 PM, doesn't admit inpatients.) We were alone. A very kind but also very incompetent nurse tried to hook up an IV, couldn't push saline through it. Eventually called another nurse who messed with the plastic connectors. Sudden spurt of blood and saline; the first nurse shrieked, then immediately apologized — a really unprofessional reaction. The second nurse, clearly much more capable, removed the IV and placed another one in the other arm, and off I went, cladribine at last.

Rita stopped by around 7:15 on her way home. We won't see her again on this trip, since she's off for the next 4 days. Rita's great; manages an amazing number of details and doesn't ever seem to lose her cool. Last thing she said, on her way out the door: Don't hesitate to call Dr. Kreitman. He really is 24/7.

We finally left the hospital around 8:45 PM. We'd been there more than 12 hours.

Last item of the day. Around 10 PM I got ready to take Levaquin, the antibiotic I'd been prescribed for pneumonia. But the warning labels genuinely scared me: possible tendon rupture (including up to 3 months after taking the drug), insomnia, leg cramps, lots of others. Since I have insomnia and leg cramps already, and since physical exercise is crucial to my sanity, this began to sound like something I really did not want to do.

So I called Dr. Kreitman, at 10:30 PM. Apologized profusely for the late call, but he didn't balk at all. Said he'd never seen these side effects and that Levaquin was very commonly prescribed. But he also said he didn't think treating the pneumonia was so urgent. Talk to the infectious disease people tomorrow and see what they say. Maybe they can find a substitute, like ciprofloxacin. That's what I'll do.

Amazing. He really is 24/7.