December 4th, 2004
I am between two worlds in a world of my own. I am alone at a Super 8 Motel in Wichita, KS. Tonight I have left the world of being a father of a child with cancer. I am on my way to the world of my mother-in-law’s cancer.
Rachel’s mother, Diane, has been in the hospital since the day before Thanksgiving due to fluid in her lungs. They’d found lesions on her liver but were unable to biopsy because of her lungs. They drained 1-2 liters of fluid from her lungs each time they drained them. Over the weekend after Thanksgiving they were doing a procedure to attempt to solve the lung fluid and take tissue samples. We got a phone call on Thursday (December 2). It was Rachel’s father, Frank, calling to tell us that things were not going well. A CT scan was showing cancer in the lungs and liver. Her condition was degrading rapidly. Frank wanted the children (Rachel and Arnie) to come home as soon as possible. The doctors are attempting some desperation chemotherapy, but we don’t expect she will live long. So we began making a plan to get Rachel to Iowa, as fully equipped with wheelchair and work tools as possible so she could stay as long as she can, without disrupting Spencer’s care. At first, we toyed with Rachel going up immediately on Thursday afternoon, but the best her brother could do was Friday afternoon (it’s hard getting from Salmon, ID, to Independence, IA). We scheduled her to fly up Friday with a portable wheelchair. In order to get her a real, electric wheelchair and the ability to go places with it, we planned for me to drive up with her wheelchair and van over the weekend and fly home Monday. That left me in Austin for Spencer’s procedure on Friday and back to care for the boys as soon as possible. We got Brad and Nicole to spend 24 hours with our kids at our house starting Saturday morning, and Sharron to take the next 21 hours until Monday when Anna, our nanny, arrives. She’ll take the kids until I make it back Monday afternoon. Rachel has unrestricted plane tickets from AUS to CID and back so she can return home when it makes sense. I have unrestricted tickets from CID to AUS (I had to check that three times when making the reservations to make sure I didn’t get it backwards) and back so I can fly back to get the van when Rachel comes home. One complication was we didn’t actually have Rachel’s van. Her old van was in the shop being repaired and the wheelchair ramp wasn’t working. Fortunately, the Alamo Mobility folks came through late Friday afternoon, fixed the van, and left it parked outside the shop so I could pick it up Saturday at noon.
Friday is procedure day. This 4 week cycle is Consolidation and Spencer gets a lumbar puncture every Friday for intrathecal chemotherapy with methotrexate. Spencer’s blood numbers were fine. He’s great and full of energy. He’s taking all the medication on schedule. His appointment went well. His surgery took less time than it took me to buy a latte to drink while waiting for him to recover and shortly after I finished the latte he was ready for me in the recovery room. We headed home and I scrambled to get errands done that needed doing before I could leave town. Saturday, we went to his occupational therapy, met Brad and Nicole at our house, and then I headed to Taylor to drop off our rental van, pick up Rachel’s van, and head directly for Iowa.
Now I find myself temporarily in a world without cancer between two worlds of cancer. I drove eight and a half hours listening to CDs. I chose my CDs carefully; they are all the ones that I normally wouldn’t play since they aren’t to Rachel’s liking. Then I found a hotel in Wichita, KS. Now I am watching Firefly (which, by the way, is much better when you watch the episodes in the intended order rather than the wacky sequence in which they were broadcast) and thinking about what I want to do with my life.
What to do with my life? That’s a heavy question to be pondering when four weeks is my current long term planning horizon. Yet it’s the question I’d been planning to resolve before any of this pesky cancer stuff got in the way. I left AMD in October with the intent to work on a startup idea, focus on raising the boys “for a while”, take the family on a temporary IBM relocation (for Rachel’s job) at some point in the next couple of years, and then tranisition my career to the next phase. Lately, it has been becoming clearer that this next phase is probably not going to be a continuation of my software developer career. That opens up scary new possibilities. A world without constraints is frightening to explore. What better theme to attack when spending a night alone in rainy Wichita?
I’ll stick to one idea with each exploration, so this first one is actually easy. It popped into my head. I have already committed to three years or more of coping with Spencer’s cancer, at least one year of hard core fundrasising for the Lance Armstrong Foundation, and have been considering volunteering at the LAF offices once I start having some free time in January. Since I am already dedicating a big chunk of my life to fighting cancer, perhaps it would be worthwhile to ponder my new career as somehow involving helping in the fight against cancer. Becoming a doctor or researcher is pretty much out – too much schooling to undertake with my preferences and age (42). Obvious options seem to include hospice work, advocacy, direct support of cancer survivors. What else? Anyone?