I’ve got enough brains right now to make a short update but not to sort through internet connection issues for my computer. So I’m adding a quick short update from my phone.
Monday I completed the hair trim we started last week (when clumps of teal colored hair started falling out). I shaved my head to leave a fuzzy scalp. I was shocked that it actually looks GOOD!! (It’s one way to highlight my eyes—which I consider to be my best feature…)
I had the two meds infusion on Tuesday. It went smoothly. I felt reasonably good until I got back home and fell apart with an unexpected pain spike. Eventually made some changes with my pain/palliative team to give smoother long term control and was then able to fall asleep rest of Tuesday.
Yesterday, I had buzzy jittery energy from the 3 days of steroids wrapped around this bigger infusion day. I tried to copy my still very active mom (who is in her 80s) and do small energy burst tasks with cat naps (errrr, dog naps?!) in between to avoid huge crash from overdrawing my physical energy bucket.
After a few very likely to be draining days of feeling horrid, exhausted, not hungry, etc, today through sometime this weekend, we are hoping for a gradual slide back upwards to feeling good for a week of days in a row. Next week is rest-week with no infusions.
As always, thanks so much for your encouragement, prayers and letting me know I’m not forgotten on this health adventure! Love to each of you…