Mom managed to get up at 6AM to come to UCSF with me today. She was on double daughter/grandson duty. We arrived on time, only to wait 50 minutes before I saw the clinical trial nurse, Jane, whom I really like. We just put 2 and 2 together today. Her last name is Rabbit: Haas in English. Mom was confused about the delay in seeing anyone. At Kaiser, that kind of wait is rare. I think I have waited that long twice this year, oh maybe three times if I include the Paco and Tom’s pediatrician in the mix. Out of how many appointments? A total of over 30, I think.
To be fair, they are a brain tumor institute. It makes me wonder how bad things are around the world. They are probably taking every patient they can manage. Like I said, I have the best of both worlds.
My weight is down, but still not at a risky speed. About a pound a week, which is going to be easier to keep off. I gave them my list of side effects, yet not really complaining., but the list seems to be growing.: cracks in fingertips, facial acne rash galore, nail peeling and discoloration, ear noise, left side super sensitive, and of course, diarrhea. Dr. Butowski came in, it is the first time I have met him: http://neurosurgery.ucsf.edu/index.php/about_us_faculty_butowski.html. He was dressed very metro sexual today. I would try to set him up with Colleen, but then my mom pointed out that he was about a decade younger. True, he seems about 35. I had to whisper to my mom, “guapo.” She smiled and said “in a bookish way.” True enough.
So his general idea is that this list of side effects is a combo of radiation and Tarceva. But he also made it clear that we are on a new frontier. I do like that idea. All is fine neurologically. So it would seem. When I did mention my memory not being as super efficient as it was, I assumed my brain was aged about 10 years. He thought in about 6 mos, that should come back . Let’s all hope. Mom mentioned her memory is not the steel trap I saw it. Then I quizzed her on cousin birthdays. Yes, she knew right away. My point was made.
From there we headed across the street to the hospital (Uncle Jim, there is valet parking on the clinical side). And I marched in with Tom to no refusal. From there Mary hooked me up in minutes, and believe it or not, I actually took over feeding Tommy from mom with the IV attached! He was working her, and kept trying to steal the spoon from her. He knows better to try that with me. But Mary and crew were lovely as always.
I met two other patients that were women, one in her 60s we guess, one in her 70s. The first I will hopefully start communicated with. I think she is a Giant Cell person as well. Then older one in the infusion area was in love with Tommy. A key reason I bring him. He seems to perk everyone up.
From there, we tried out the cafeteria, busy but decent. Then we headed home. Tom’s eyes closed the minute we started to move. Then I stopped for gas in Richmond. From there, Tom was awake until about Fairfield. Mom was asleep from El Cerrito to Vacaville.
I was ok with that, as she was in charge of Paco the minute we walked in. the door. A few moments, they had a beginning bridge board game set up and had roped Steve in as a 3rd. Steve multi-tasked, helped Tommy with snacks and let me take a power nap.
Every day I say thank you for what I have. I suppose I should be sad more often. No way. Too many smiles and too much good fortune to let it get to me again.