As of Thursday, Dad has wrapped up radiation therapy. He strolled out of PAMF with Danny, and the two of them headed out for a long jaunt around the Bay Area. Between 10am and 5pm, Dad managed to work for a couple of hours, pick up some new jeans at Hugo Boss, select a gourmet milk frother, as well as work out and shower at PAC. He was pretty exhausted by the time he got home, but this was a very full day of errands for dad (and Danny).
Robbie and I got home from the city around the same time, and the three of us rested for a few hours before our grand night out at dad’s restaurant of choice: Sundance, a local steakhouse. Mom, dad, Robbie, and I met with Shingo and Isabel for an intimate, fun dinner. Dad was very, very satisfied with the meal. Partially due to the steroid but also due in part by dad’s intention to live life fully, dad has been enjoying the full spectrum of food in a new way. He’s into full course meals, as well as big snacks in the interim. It’s been so fun to cook for him. He is a very willing recipient of pretty much anything.
I must have come into contact with something Thursday night, because for the past two days I’ve been very nauseous. It took most of my strength (and Robbie’s kind offer to drive) to take dad to his Friday morning appointment with Dr. Colossi, his oncologist. Dr. Colossi reflected on my dad’s current state, and her nurse did a brief physical. Dad was a bit manic Friday morning, likely due to the high dose of steroids he’s been taking first thing. He’s also been slurring his words in a more conspicuous way these last few days, a symptom I hope will be remedied by the higher dose of steroid. After discussing this, Dr. Colossi recommended a referral to a phase 3 Stanford clinical vaccine trial. With our consent, Stanford would perform a test to determine if dad has the necessary mutation to participate in the study. About 20% of all GBM patients have this necessary mutation (Kennism: “if you had a 20% chance of winning the lottery each day, we’d all be buying tickets”). Dad will take the test as soon as the Stanford team has worked through dad’s paperwork.
If it’s not entirely obvious on this site, it’s been very difficult to make decisive decisions about the clinical trials. We’ve been very interested in the clinical trials at Duke, but I feel worried of the physical and emotional strain a cross-country site would inflict onto dad. I’ve raised these issues to two of dad’s doctors, and both have remarked on how taxing the long distance travel would be for dad. Were dad to go through somewhere like Duke, he would go there first for the initial treatment, and then every two months for checkups and evaluations. Though dad’s energy is high for now, I know the trips would wipe him out for days or even weeks. It’s difficult to imagine what that would look like for him when his health starts to wane. Dr. Colocci’s mention of a phase 3 clinical trial based out of Stanford would be inviting for many reasons: local and familiar facility, and a team of doctors that are familiar with each other (or have even worked together on cases before), less risk of exhaustion for dad, among other reasons. We’re working through these decisions at the moment, and will have more to report soon.
After the appointment on Friday, we headed back to the house. I was nauseous for the remaining day, though managed to watch Citizen Kane with dad in the afternoon. Dad has some movies on the top of his to-do list, and is always looking for a watching partner. Dad has an obscure preference for movies, and Citizen Kane is the first on his list that appeared remotely inviting. After the movie, Kelly, mom, Robbie, dad, and I grabbed some pho.
Miles and Peter arrived from out of town last night. Miles’s 1am arrival wish was some fresh In-N-Out, which my parents very generously picked up for him on their way over to the airport. Today was the memorial service for my dad’s father, Wally. We all met at my grandparent’s late Clayton home and walked around the well-loved property. The service was intimate, honest, and light. My family, Peter, Derrick, Kay, Jonathan, Emily, and Anna, as well as my grandfather’s sister Emily, her daughter Kelly, and my dad’s cousin Jim were all in attendance. Everyone shared some of their memories of my grandfather, and Aunt Emily went through a lot of my grandfather’s early history that I had never known before today. Dad had been jotting down memories and thoughts of his father for the past few days, and he delivered a cogent, insightful speech alongside his brothers and other close family members. The service was touching and powerful to attend.
Dad spent the rest of the day in Walnut Creek with his brothers and family members. From the report I got from my mom and Robbie, dad was wiped when he got back home with Peter. He was in bed before I got back home, but Robbie mentioned dad continued to slur his words. We’re working to see if this is something constant, or rather something that presents itself when he’s tired from the long day.