- It’s Monday evening in Seattle, the skies are clearing after a long rainy spell, and I’m at the University of Washington Medical Center for my second day of “conditioning” for the transplant. I’m on track to get my new stem cells on Monday, June 16.
- Last Friday, I got word that the coronavirus, which had caused the recent delay, had cleared from my system (good news), but that, at a molecular level, there are clear indications that the bcr/abl mutation, which causes my leukemia, was starting to increase. (Not such good news: The Hyper CVAD induction chemo that I received in April and May did a good job of bringing the bcr/abl mutation down to very low levels, but did not make it undetectable, which would have been the optimum result. Unfortunately, the bcr/abl levels are already starting to creep up from the low point they’d hit during the Hyper CVAD chemo–a likely indicator of the aggressive nature of the leukemia I’ve got–so the doctors here were eager to get me back on the transplant schedule.)
- Yesterday, I got the first part of my conditioning (fludarabine and micafungin) at the SCCA clinic on an out-patient basis. This morning I checked back into the familiar confines of the 7th floor transplant ward at the hospital. I’ve got a south facing room with a good view of the Montlake Cut (which connects Lakes Washington and Union). Once the clouds lift, I think I should also have a good view of Mt. Rainier. I received a big dose of Cytoxan today and will get another tomorrow. Then a rest day, followed by four days of total body irradiation (TBI). And then, next Monday, the new stem cells…
- I’m still feeling pretty good. Lisa and I walked the couple of miles to the hospital this morning. Even the rain on my face felt good–particularly since I won’t be able to feel that again for a month or so. I expect that I’ll start to drag soon from the cumulative effects of the chemo and TBI. Serious fatigue and mucositis seem to be pretty sure bets, and there are a raft of other possible complications (particularly viral, bacterial, and fungal infections) that the team here will also be focused on preventing or managing.
- My brother Caleb has been here for about a week now. The girls, as usual, find him much cooler than their mom or dad. Mimi helped Caleb make a super stir-fry for supper last night. It was also great that Natasha, Caleb’s wife, was able to fly out to Seattle for the weekend. For the first time since we arrived in mid-March, we’ve had a string of rainy days (more typical has been occasional showers, overcast skies, with the sun breaking through every so often). The rain didn’t slow us down though. We saw the girls’ drama class productions at the Hutch School (Mimi’s group did a variety show, and Iszy’s crew put on their interpretation of the Dr. Seuss classic, “The Lorax”). We also visited the Seattle Public Library system’s Central Library, which is a pretty remarkable building; ate some excellent doughnuts (and bought some compensatory fruits and vegetables) at Pike Place Market; did some fun walks and visits to a few of the great parks here; and shared some fine meals.
- It’s lately been an occasional challenge for me not to get bogged down in the anxiety, worry, and second-guessing that can try to dominate my thoughts, but times like this past weekend are the best antidote to such troubles. ”Don’t count the days, but rather make the days count.” So goes one of the many bits of received wisdom that have helped me with this process. Good advice, but–as with many such recommendations–easy to say, but harder to do.
- I am struck by the necessary commitment of this process. Though I’ve been aiming for the transplant for the past 4 months, the various delays and hurdles that have cropped up have in some ways distracted me from the absolute commitment that is required for the task ahead. Now I feel very much poised at the top of a big drop. (Greg’s comment on my last post was very apt.) Having started the chemo, and soon the radiation, which will combine to wipe out my marrow–and, I hope, the lingering leukemia–there is definitely no turning back.
- The medical team here continues to inspire confidence and hope. The doctors have been very responsive to our many questions (including e-mails that I sent them late last night), and we feel that we are in the best place we could be, given the circumstances.
- I feel strengthened also by the magnificent support from family and friends. I’d like to write or call lots of you personally and will try to do that over the next few days. Finally, at Lisa’s request, I’ve not made much mention of her in this journal so far. But I’m sure it will come as no surprise that she is going above and beyond the vows we made back in 1991 (“for better, for worse… in sickness or in health, to love and to cherish…”).
- Here we go.
