June 4, 2008
My back feels better these days, but I notice I'm in the bathroom more frequently. And my appetite has dwindled. I'm definitely tireder.
It makes no logical sense, but just like husbands who experience sympathetic pregnancies with the resulting weight gain and food cravings, I think I have sympathetic neuroblastoma. All Erin has to do is mention a symptom or side effect, and I start channeling it. Not, of course, to the extent that Erin experiences it. Still, when her back hurt a lot this spring, I found that I would switch the seat warmer on in the driver's seat when I ferried her around town, just to help my achy back. And since she started irinotecan and temador, my back feels better, but my digestive track has suffered. I can't explain it, but as a mother, I just wish it were as easy as me taking over the pain, the digestive upset, the trauma of it all.
I do have to report on soccer tryouts: Erin played harder for longer than she has since spring break. At a water break about half way through tryouts, she came over and asked me for one of those "melt-in-your-mouth tablets" (zofran) because she thought she was going to throw up. I looked at her and considered pulling her off the field. Instead, I reached into my purse and handed her one. We exchanged a look. Without saying a word, she and I both had decided that she felt that way because it was 95 degrees with full humidity, she was out of playing shape, and she was working hard (I suspect everyone there was about to throw up). The zofran was the compromise she was willing to make to keep going. She finished out the session and rewarded herself by watching a couple of episodes of Star Trek Next Generation on television. I don't know if the trainers recognize that the fierce determination that gets her through treatment and has let her face cancer down for the last six years is exactly the determination they need their players to have. I hope it shines through, because on size and stamina alone, she might not measure up.
Clinic yesterday was a breeze, except that the staff has a new computer system that no one really understands. That's why Dr. Russell needed help to write Erin's prescriptions; that's why I had to take a phone survey that began "has your son ever had a CT scan before?" before I could get this month's scans scheduled (I guess doing scans every two or three months for six years doesn't excuse you from anything); that's also why it took an inordinate amount of time to schedule Erin's next appointment (see below). Oh well, none of that really mattered. Erin's counts can back stronger than I expected and about the same as last week:
She had gained the kilo back she had lost earlier last month and perhaps grown a half centimeter. This is the off week and we're set to start the second cycle of the Rhino next week.
Unfortunately (don't you hate paragraphs that start with unfortunately?), Dr. Russell nixed the idea that Erin could take week two of chemo at camp or forgo the second week or delay the second week. This turned Erin into a storm of gloom. Months ago, Erin had organized her summer around Mo Ranch. This was her first overnight camp opportunity, scheduled to encompass her birthday. It was the only firm plan she had. Everything else, in her mind was negotiable. Mo Ranch wasn't.
I guess the good news is that you can take the Rhino two ways: at home for two consecutive weeks or at clinic as an infusion for one week. So, next week, I'm going to teach each morning, then stow Erin, drive the two hours to Houston, let the nurses drip some toxic chemicals into her bloodstream, drive home, sleep, and re-start the cycle. I'm going to consider it a set of recreational infusions (with apologies to Spencer Dolling, who coined the term recreational transfusion for all those times he took a Friday blood or platelet transfusion even when he hadn't quite bottomed out so that he would be ready for a weekend of fun). We'll pack the chemo into one week, so Erin can move unfettered into week two and the healing powers of Mo Ranch. Let me know if you would like to join us for one of our daily outings.