Sunday, November 14, 2010

Last day


NIH, day 7. The last day. Got there at 9:15, did bloodwork and settled in for the 2-hour cladribine drip.

A while later another guy took the chair next to me: Greg, another patient in the Kreitman trial. First-timer, a bit younger than me, very vigorous-seeming, a data manager from Wisconsin. Like me, first diagnosis came at a blood test for a routine physical. He'd started feeling fatigued, needing naps, but didn’t think of them as symptoms. Scary blood counts — 0.35 absolute neutrophils.

Greg got the other trial arm, so he'd done rituxan on Wednesday. Said he shook and shivered, but they didn't start him until late at night so he'd managed to sleep through it without even telling the nurses, who could've doped him up with Demerol, until the next morning. We traded cards, maybe will stay in touch.

My counts came back. Hemoglobin back up to 9.3, thanks to the transfusion. But 0.5 on the neutrophils. Not as low as they got in 2007 (0.3); probably will get lower before they get higher. That means I'm in "severe neutropenia" territory now (0.0-0.5). Have to stay away from crowds and anyone who's sick. Also have to stop eating anything raw. No more sushi, no more rare-cooked meat. Fortunately there have been very few cases of infections reported in HCL patients, so I'll hope I don't become another one, but it does mean a long period — perhaps 3 weeks — when I won't be going out of the house much.

Finished up the drip, slept through about an hour of it. Left the hospital a little after noon, found lunch with my mom and joined Gabrielle and Luka at the National Zoo. Luka had been there for hours and was ready to leave before we even arrived, so except for a lion and a tiger I didn't really see anything.

Back to Bethesda, took a cab to the airport and flew home.

1 comment:

John Carson said...

So glad you are home! Take good care, stay away from all us germ-laden folks, and get your strength back.