Trials and tribulations of a patient in search of a bone marrow transplant

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Friday, September 5, 2008

The Ordeal Continues - Day 8

I'm sitting in the hospital room with Steven at 1AM watching Trains, Planes and Automobiles for the second time. Very important to have a belly laugh when you're sick (even though it hurts).

Still waiting and watching the counts. Yesterday, the blast count was at 93% which sounds absolutely off the charts terrifying, but today that had dropped to 25% which looks a lot better. Everything else has also dropped precipitously. Kidney numbers have risen a little, so have liver numbers, but suppose that is to be expected.

The horrible, awful dreaded mouth sores are coming back. Today he feels bruised all over, as though he'd been thoroughly stomped. He hasn't had that symptom before. And his throat hurts a lot, as though there were a golf ball in the back of it. A couple of Dilaudid shots have taken the edge off. He's joking with me now that the pain has eased.

Good news is that he still has a decent appetite and has been able to keep food down so far. Food tastes less weird than it has with other chemos for which he is grateful. Hope that lasts. It is important to try to keep his weight up. Steven started this chemo more than 60 pounds lighter than his previous weight. Although amazingly, he has gained eight pounds since he came into the hospital last week.

One effect of several rounds of chemo is that your finger and toe nails grow in bands. The chemo kills the nails, then new nails grow underneath and push the old ones up and off. To try to hang onto some of the nails instead of flipping them off to bare nailbed by accident, we painted Steven's nails with some Calcium Gel Strengthener tonight. We'll see if that works. Looks like he had a fancy pro manicure.

Alexa played with the marching band for the second time tonight. Steven was really upset to miss her first game performance last week when he came back to the hospital. He had planned to go to all the games with her. So Zsa-Zsa (me) went to the game with a camera. Called Steven to let him hear the band at its peak and then he spoke with Alexa who was delighted to share this with her father.

Steven says he feels stronger than he did during those last rounds of the previous chemos. Perhaps because he had a couple of months break post transplant. In any case, his spirit is absolutely fantastic and he laughs constantly. This will help him get through whatever is to come.

Andrew was sick yesterday. Hope he gets well enough to come see his Dad this week-end. Last week, he and I got stuck in a hospital elevator for thirty minutes, with a cranky old guy on a guerney, his wife in her pajamas with high heels, pearls and handbag, and two youngish med techs who became rather hysterical. Then old guy on guerney got hysterical and kept shouting he was claustrophobic. Andrew's eyes were getting bigger and bigger as sweat began to run down everyone's faces but he managed to hold it together quite well, balancing three desserts in his hands the whole time. We had gone down for a snack and everyone was wondering where we had disappeared. Made a good story for Andrew to tell.


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