Posted by Becky
Leif's energy has been gradually increasing. It's not very noticeable day-to-day, but it's definitely noticeable week-to-week. For example, two weeks ago he didn't have the energy to read, but this week he's gotten almost halfway through Come Spring.
He also has been doing some cooking, making his own breakfasts and lunches, doing some computer drafting, and getting exercise. Next time I ambush him with the camera, I'll ask him to look up and smile, for some friendlier pictures than these.
At yesterday's clinic visit, Leif's labs were back up to the levels of his Day 22 visit, probably because he stopped taking the antibiotic that suppresses bone marrow. His blood counts (platelets, hemoglobin, and white blood cells) are still low, but not awful. Quitting the extra antibiotics has helped with the nausea a great deal; he is still queasy immediately after taking his pile of pills morning and evening, but feels better about an hour later. The nurse reminded him yesterday that he has medications to help with that level of nausea. He'd gotten out of the habit of taking them, because more pills were not helping. At the clinic he also realized that his pain level was a zero - no pain at all! Not even any pain in his side from his spleen, which still seems to be getting smaller. He's able to squat down to put his shoes on, and do some stretches where he bends forward, carefully.
While continuing to taper off the pain medications, Leif is also taking this opportunity to taper off the Ativan (lorazepam) that he was taking to deal with awful drug-induced nightmares. The nightmares are gone, but a common effect of stopping lorazepam is insomnia. It's a little ridiculous, because he can nap fine during the day, but at his evening bedtime, when he would normally take some lorazepam, not taking it leaves him wide awake. He's not getting sleep-deprived, because he can nap, although he's been trying not to nap too much so he'll be sleepy at night. Two people in a studio apartment, one of whom works during the daytime, and one of whom can't sleep at night, can become cranky.
After the clinic visit yesterday, he got another bone marrow biopsy. Thus his pain level is non-zero again. He got sedation during the procedure, so that wasn't bad, but experience says he'll be sore for a couple of weeks while it heals up. The results won't be back for over a week, because the chimerism test takes a long time. The laboratory differentiates Leif's marrow cells from the donor marrow cells by testing DNA in the sample.
Leif's energy has been gradually increasing. It's not very noticeable day-to-day, but it's definitely noticeable week-to-week. For example, two weeks ago he didn't have the energy to read, but this week he's gotten almost halfway through Come Spring.
At yesterday's clinic visit, Leif's labs were back up to the levels of his Day 22 visit, probably because he stopped taking the antibiotic that suppresses bone marrow. His blood counts (platelets, hemoglobin, and white blood cells) are still low, but not awful. Quitting the extra antibiotics has helped with the nausea a great deal; he is still queasy immediately after taking his pile of pills morning and evening, but feels better about an hour later. The nurse reminded him yesterday that he has medications to help with that level of nausea. He'd gotten out of the habit of taking them, because more pills were not helping. At the clinic he also realized that his pain level was a zero - no pain at all! Not even any pain in his side from his spleen, which still seems to be getting smaller. He's able to squat down to put his shoes on, and do some stretches where he bends forward, carefully.
While continuing to taper off the pain medications, Leif is also taking this opportunity to taper off the Ativan (lorazepam) that he was taking to deal with awful drug-induced nightmares. The nightmares are gone, but a common effect of stopping lorazepam is insomnia. It's a little ridiculous, because he can nap fine during the day, but at his evening bedtime, when he would normally take some lorazepam, not taking it leaves him wide awake. He's not getting sleep-deprived, because he can nap, although he's been trying not to nap too much so he'll be sleepy at night. Two people in a studio apartment, one of whom works during the daytime, and one of whom can't sleep at night, can become cranky.
After the clinic visit yesterday, he got another bone marrow biopsy. Thus his pain level is non-zero again. He got sedation during the procedure, so that wasn't bad, but experience says he'll be sore for a couple of weeks while it heals up. The results won't be back for over a week, because the chimerism test takes a long time. The laboratory differentiates Leif's marrow cells from the donor marrow cells by testing DNA in the sample.
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