Day +242: Nothing much happening these days as far as my Hodgkins. We’re in the waiting period between harvesting my T cells and getting the ‘supercharged’ CAR-T cells infused back into me. Some pain in my right hip, not sure the cause. Fatigue is the one constant.
Day +213: Drove out to UNC Wednesday to meet the clinical trial team. Long day, but worthwhile. I get my T cells extracted on Monday through apheresis, which is like dialysis. They’ll be ‘supercharged’ and then returned to me as cancer fighting CAR-T cells later this spring.
We got Lutron automated blinds installed this week in our TV room. Apple HomeKit compatible and programmable. Works with Siri.👍 All 6 shades adjusted how I want, with spoken commands.
After the 6-week wait, I’ll receive the cells and must stay there for 3-4 weeks for daily checks (no hospital stay). This is better than radiation because it’s whole-body (systemic) like Hodgkins, whereas the radiation targets only one small spot.
Day +199: By chance, my name just came up on a clinical trial waitlist after 2 years. So instead of radiation, I’ll be getting CAR-T cell treatments through UNC. Two quick trips out there, then a 6-week wait while they “manufacture” the supercharged T cells that fight lymphoma.
Day +189: Feeling really good yesterday & today. They are tapering down 2 of my meds. I was once 31 pills/day, now 7/day. I get a bone biopsy of the spot in my femur Thursday. Will have news about it next week.
Day +182: Got PET scan results. Not “all clear” unfortunately. Found a small spot in my femur, not sure it’s Hodgkins. Will biopsy it next week. I’ll get targeted radiation to eliminate the spot. My oncologist is setting up radiation regimen now — # of treatments, frequency, etc.
Day +181: Had my PET scan this morning. Results tomorrow, and will determine my trajectory. If "all clear", as it was at the 90-day PET scan, the recovery continues and we're all overjoyed. If not...
Day +171: I’ve had abdominal issues for the past 2 weeks Consequently, got a CT scan today and will have more testing next week to determine the cause, and figure out a ‘fix’. I generally feel OK, though fatigue continues daily.
Day +155: Getting my trifusion out today. Very minor procedure. They snip a couple stitches, then literally pull the tubing out from under my skin. Sounds icky; I can feel it when they’re pulling the tubing out, but it’ll be nice to be free of it. No more shower covers! 😁
It’s a sad day today, indeed. Scott Adams, creator of Dilbert, died. He was a voice for many office-based workers, particularly tech workers, so his humor and the situations Dilbert encountered were very relatable to me, particularly at Duke Energy and Wells Fargo.
Beautiful day here on January 1, but I can't go out of the house because of the sun! ☹️ I'm still extremely sun-sensitive. Just a few minutes triggers a red rash associated with Graft vs Host Disease (GVHD).