What's Going On

Not a question; an update.

Not much is going on with me, which is ideal. Last night was the first really bad night of sleep I've had since the first night. In general, the interruptions have been minimized and consolidated to midnight and 4:00 a.m. Last night, my nose was so congested I had to breathe through my mouth, which in the very dry hospital air leads to a parched mouth in about 15 minutes. So, every 15 minutes, if I had fallen asleep, I would wake up with a parched mouth and need to drink a little water.

I asked for some relief around 2:00 a.m. and was brought a nasal spray that the nurse said would work wonders. I suppose it might be helpful before your nasal passages become solidly blocked, but once that happens, the spray doesn't actually go anywhere useful.

At 3:30, I asked for a sleeping aid. At 4:00, the nurse told me she was waiting for a response from the doctor. At 4:30, the nurse told me the doctor had denied my request, because if I got a sleeping pill in the early morning I would sleep for much of the day. I said I didn't see the problem with that, since I was probably going to sleep much of the day anyway, having not yet had any sleep. At 5:00, the nurse brought me a sleeping pill.

During the day, my sinuses have been unplugged, and I have been using the nasal spray to try to keep them that way. I also will be getting a decongestant and a sleeping pill tonight.

My sister, Mara, came to town Sunday evening, in advance of tests on Monday. Tomorrow (Thursday), she will donate lymphocytes, which I may or may not use in the future. Then she will start taking her neupogen to stimulate stem cell growth. She will be getting a higher dose this time, so she may feel more uncomfortable. She'll head down to Champaign on Friday and come back Sunday to begin stem cell collection on Monday.

Last time, the harvest did not yield the ideal number of cells. Among the possible reasons are the difference between our weights and some difficulty with her veins. My doctor does not think the lower-than-optimal number is related to my relapse, because for a while after the transplant all the numbers looked as good as they could look. However, it doesn't hurt to have more.

The higher dose is one part of the effort to collect more stem cells this time. They will probably also use a femoral vein rather than a brachial vein, and if that's not doing the job, they may even put in a temporary central line on Tuesday. After the harvest, Mara can go home.

Meanwhile, my instructions are to cool my heels until November 15 while we wait to see my mid-term response to the most recent chemo. The early results are what they should be: my blood counts, and especially my white counts, are very low. I haven't lost my hair, though I did see more strands than usual on the washcloth during my last shower.

When we get to November 15, there are several paths we could go down. If there is no real blood count recovery, we will probably wipe everything out with another round of chemo and proceed to a transplant. Given my chemo response history, this seems like the most likely option.

If there is a solid recovery, and if a bone marrow biopsy shows that all or nearly all of the new marrow cells are offspring of Mara's cells from the previous transplant, then it might not make sense to wipe everything out and do another transplant. Instead, I might get a donor lymphocyte infusion (DLI). The idea would be to supercharge my immune response, hoping to find the right balance between killing any remaining leukemia cells and not doing too much harm to various organs (graft vs. host disease).

A third path, and I think the least likely, is that the blood counts look so good that we just let me recover without further intervention, closely monitoring the counts. Sometimes patients go into remission after this round of chemo.

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In sports news, our sons' teams had historic soccer seasons this fall. Paul's high school team lost only twice all season and made it to the state quarterfinals, going several rounds farther than any soccer team had gone previously in school history. The core of the team is juniors, including Paul, so they have a good shot at success next year as well. I got to watch quite a few games before entering the hospital, and then several more on video thanks to a team parent.

Jake's Haverford team lost their first 4 conference games but won the remaining 5, making the conference tournament for the first time in the conference's 11-year history. (Fun trivia: Haverford is the oldest college soccer program in the country.) Tonight they won their first-round game, putting them into the semifinals on Friday. It's been a steady climb for Jake and the other seniors, who as freshman joined a team that had not won a conference game in years. I have been able to watch a few of Jake's games this fall, through poor quality live video feeds.

As for me, I'm walking 30 to 60 minutes a day, up and down the hall. There is a treadmill, but until I'm up to running, I'd rather really walk. It's hot enough in the double gown I have to wear, and when I walk the hall I get a slight cooling effect from moving through the air, and I don't have to wear gloves as I do on the treadmill.

Given my current training, I have amended my goal of actually running a 5K this fall. Instead, my goal is to complete a 5K, walking the whole way if that's what it takes. As long as I continue to be able to walk for 60 minutes straight, this seems realistic.