Post from the hospital long-delayed

Sorry I haven’t posted more. When I try to find the keys, either my hands are shaking, my vision and mind are blurry, someone walks in or calls or I make so many typos I quite (there’s one right there: I meant quit) in exasperation. In other words, it’s hard to concentrate. I’m sure anyone who’s been in the hospital can understand. It probably took me more than half an hour to write this paragraph.

So here goes:

Day +5
“You look great. You’re right where you should be!”
These words from Dr. Alyea
put me in a good mood, not necessarily the looking good part, although that helps, but rather the right where you should be part.

It is the opposite of “we don’t know what is happening with you,” a viewpoint I have heard all too often. Unfortunately, part of being where I’m supposed to be is the increase not only in mouth sores but also now soreness down my throat and esophagus. They increased my dose of Oxycodone from 5 to to 10 mg., and the higher dose does seem to keep the pain in check.

I told Dr. Alyea that I didn’t like taking too much pain medication, and he said there is no such thing as too much. “They don’t give you a discount or a credit at the gift shop for taking less,” he said. The important thing, he stressed, is to keep pain minimal. The benefits are wide-ranging and mostly obvious, and I know that it’s especially important to keep drinking and eating. During my first round in 2003, I ended up on IV nutrition for more than a week, and I really hope not to go there again. Of course I might end up on a pain pump and possibly IV and I need to remember that it’s temporary and not a result of my failing to try hard enough.

PJ, a kindred spirit I met through the blogosphere, stopped by after her check-up at Dana-Farber. She looks terrific, and it’s been nice getting to know her through her blog, then phone calls and now in-person.

Ben had a few days off and came to visit that night. As usual, it was great too see him. He stayed at friend’s that night and popped in to say hi Friday morning. He did all the driving, and I got the bonus point.


Day +6
I moved to Room 57. I should say “we,” because Diane did most of the work. The room is a tiny bit bigger, and much brighter. In my old room I got only 25 minutes of sun on a good day. This room is bright most of the day, and I think it’s good for my spirit.

The big news Thursday is that I only had one platelet. This is an abbreviation for 1,000; normal platelet range is 150,000-350,000. Estimates of the normal range slightly. The sound of saying a person has just “one” platelet,” however, is an attention-grabber that leads to fear of bruises and bleeding to death. I was told to take a break from my walks on the pod and to be very careful about bumping into things. I did go out once or twice to get a cup of ice, and the nurses who saw me looked like they thought I was taking my life in my hands.

Day +7
Much of the day consisted of waiting for platelets, which finally arrived at 4 a.m., having been ordered by 9 a.m.. I also needed two units of blood, which I got at around 7 p.m. and 11 p.m. I jotted down a lot of impressions duing the long evening, but couldn't understand them in the day.

Day+8
Dan DeAngelo, my original dotcor, dropped in this morning. I had switched to a transplant docotor (Alyea) when I went the route of the allogenic transplant after the allogenoic, but he is still involved in my care. We talked about my health and his kids and then, of course, his view of how I look.

"You're looking pretty good eight days out!" he said.