January 14

One of the first things that Dr. Jackson (dad’s neurosurgeon) said when he discussed the prognosis was that this was a marathon not a sprint. I sprinted through today. One other day that was a sprints was the day my dad was discharged from Stanford. I look back on that day and recognize that there were few other ways for the day to have gone, given everyone’s schedules and capacities. Today could have been done better. 

My mom drove Miles to the airport this morning around 7:30am, and went to the gym before her long work day. I spent the morning with my dad, reading the paper together and discussing interesting articles we came across (this was short-lived but nonetheless rich due to his short attention span), and making him coffee and breakfast. We left for radiation at PAMF around 10am, where we were able to sneak in a Peet’s run before the appointment. My dad is ravenous throughout the day, so we’re trying to pump him full of calories. Despite the bowls upon bowls of nuts, bananas, yogurt, burritos, lasagna, and cookies, he’s losing a lot of weight. 

Anyways, we got to Radiation/Oncology, and spent a bit of time in the waiting room. Let me just say, the Radiation/Oncology waiting room has got to be one of the tougher spaces in that health center, but I suppose one would expect this. His radiation therapist brought me into the room, where I was able to see the entire radiation space. Objectively, it was really cool: three different screens of live video of my dad being helped into the machine, and two different screens of his brain with the specific targets of radiation. The appointment was brief – only 15 minutes in and out, with the additional hour and a half of travel there and back. It was almost painless in the sheer logistics of it, but it left my dad wiped and irritable. 

I feel very ambivalent about the agency’s extra care we’re receiving: I have yet to click with the caregivers, and feel protective about who works with my dad. I’ve been told by Carol to get a grip. Nobody’s going to take as good of care of dad as we would, but the process of finding someone who we feel comfortable with is so tough. Not just the fit itself, but we’ve had 5 different people come by to the house to help out, but they require about an hour orientation before we’re able to leave. So after the hour long tutorial, I was able to squeeze in a two hour break before returning back home for the caregiver to pick up her kids. Once we get regular help, I’ll be more able to relax and dip out. At the moment, I feel uncomfortable dipping out for longer periods of time. 

Upon my return, there was lots going on at the house: plumbers assembling the transfer bars in the shower and bathroom, people fixing all our faulty appliances, as well as occupational therapy with Elaine. Unfortunately, OT came too late in the day for my dad to really reap the benefits. He was too exhausted to get much out of the transfer work, though I was able to explore some of the gadgets that would help my dad get in some good exercise (foot and arm pedals with resistance – does anybody have any ideas of products that would be good for this?). Due to the treatment, there is a small window of opportunity where my dad is amenable to physical exercise and happy dialogue. The task now is to establish how we can cram all these important appointments into a few hours each morning. 

Carol relieved me around 4:15 today. We caught up, processed a lot of the news of the week, and gave my dad some dinner. He went into a very deep sleep shortly after, which lasted through the late evening. 

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