January 9th, 2005
Back to School
Spencer went back to school on Monday. It’s wonderful, and weird, to have more normality back in his life. The interim maintenance chemotherapy has not been causing any problems. Spencer’s energy is high. He has returned to be his usual spirited child and keeping him occupied and his behavior reasonable is more work than the cancer treatment right now. His CBC results are all great – good neutrophil count, hemoglobin and platelets normal.
Monday was a slow day at school. School was back in session, but many people had the day off from work, or were still on vacation, and only about half his class was there. Monday afternoon we had an oncologist visit. This visit was just blood test, a brief checkup, and review medication. They need to run a liver function test before we give the weekly dose of methotrexate to make sure it’s not damaging his liver. Cleared that hurdle, so we had the normal dosage this week.
Tuesday, we had a Child Life Specialist from Childrens’ Hospital of Austin do a presentation for Spencer’s class. I sat through and watched. The presentation covered the port-a-cath, procedures, medicine, baldness, super brief introduction to cancer and leukemia, how cancer is not contagious and is nobody’s fault, being careful not to hit Spencer’s port-a-cath, washing hands, and that Spencer might be out of school a few times when he’s too tired or sick from chemotherapy.
Spencer is incredibly excited to be back seeing his friends and doing projects at school.
A few weeks ago, Spencer switched to taking all of his pills straight with water. On methotrexate nights that certainly makes things easier since we have 10-12 pills to take on those evenings. Many kids take crushed up pills in a sickeningly sweet grape gel (I tried it, it’s awful), but Spencer hated that since he threw up from taking it in the hospital. We did pills in pudding for a while, but when we started the mercaptopurine we had to switch. Food, and dairy in particular, interfere with the mercaptopurine and we were using real organic dairy pudding. Initial attempts to use a tiny bit of chocolate syrup got ugly, and Spencer volunteered that pills with water might be a better plan. He’s done all of his pill taking by himself since then.
This lull is very strange. I have about 20 hours a week available to work on my, now huge from dealying anything that was not both urgent and important, task list. I’m experimenting with a Mac application called LifeBalance to manage my task list. It focuses on balancing tasks among the different high level goals you have and your desired effort allocation amongst them. I’m using “Work”, “Learning”, and “Leisure” for my top level categories, taken from the Three Boxes of Life book. My work in the last week has been focused on organizing the house, applying to do volunteer work at the Lance Armstrong Foundation, and getting ready to transfer operations of a small hosting company I am starting. My leisure has largely been working out at the health club to get back in shape, lose some weight, and prepare for cycling this year. I’m having a little trouble coming up with a good learning plan, but right now I’m settling for reading Last Chance to See, which Rachel gave me for Christmas.
I’ve also started catching up with friends I haven’t gotten around to telling about Spencer’s leukemia. That has been wonderful. I’ve gotten back in touch with a few people I haven’t spoken with in years and many who I’d fallen out of touch with for 3-6 months. Getting to talk to people is also helping me mentally and emotionally prepare for delayed intensification which starts with a procedure and a slew of chemotherapy on Valentine’s Day.
We have on procedure and IV chemotherapy on January 17 between now and the end of this phase of the protocol, so we’re looking at five good weeks ahead unless we run into problems from virus or infection.
