December 23rd, 2004
It’s all good. We delayed Spencer’s chemotherapy by three days so I could fly up to Iowa with the boys to join Rachel for her mother’s funeral. That makes this week the start of eight weeks of “Interim Maintenance #1” which is less stressful physically than the past two months or the upcoming delayed intensification series. Blood numbers are great – neutrophils, hemoglobin, and platelets all normal. No procedure until January 17 (a lumbar puncture). Oncologist visits only every other week, so no more this year.
I got a taste yesterday of the anxiety I will probably carry with me forever. Jacob, our ten month old, bruised his shin while crawling, standing, climbing, and attempting to learn to walk. I’ve checked his shin no less than five times in the last 24 hours to see if it’s healing (or staying or getting worse due to lack of platelets). I’ve done it without even realizing I’m doing it until I notice I’m examining the bruise.
Spencer has a bunch of medication including one new one (methotrexate), the return of steroids, more “merc”, and the regular preventive medicines (Nystatin and Bactrim):
- Five days of dexamethasone (half a 4 mg and a whole 0.5 mg pill twice a day) now, and another five days later.
- Oral methotrexate. Seven pills once a week.
- Mercaptopurine (four days of 1-1/2 pills, three days of 1 pill, repeat, right before bed at least one hour after food/dairy).
- Bactrim (1/2 pill twice a day three days a week).
- Nystatin (2cc swish/swallow twice a day)
That made for a rotten pill taking on Tuesday evening. With the large pills cut in half (we quarter the Bactrim), Spencer had to take 9 pills with dinner and 3 more at bedtime. All on a night with a sitter. I did the 9 pills before I went out. Teenya did the Mercaptopurine at bedtime. Spencer has switched, at his request, to taking all of his pills just with water and doing it all himself. He does a fantastic job when he doesn’t psych himself into being too afraid. When he does that, he puts the pill in his mouth and lets it dissolve a bit. With dexamethasone, this is disastrous as it tastes terrible.
With our Tuesday sitter, Rachel and I went our separate ways. She went to a women’s group Christmas dinner and white elephant gift exchange (with “nice” white elephants – good gifts that were unwanted by the one who already owned them) and got a CD of the music for Chicago and gave away some scented candles (hey! I could have burned those while taking a relaxing bath!). I went to a startup meeting of a new men’s group where we discuss group-generated topics. This week we wound up on two issues. First discussion was on being a father and how to guide and support our children without trying to direct their lives. The others in the group have older kids; I’m still pretty much in the running my sons’ lives phase. Second discussion was on careers and what makes a successful life. Nice light holiday chatter.
Last night, we got a sitter again and Rachel and I went out to dinner at Siena, a very nice (Tuscan) Italian restaurant near where we live. It was wonderful to get a break and have some time when the two of us could just talk. We haven’t gotten to do that much this year.