Several folks have contacted me, worried that I haven't posted anything to my blog in a few days. I think not posting so often may be a sign that I'm returning to my more usual routines.

I'm still plugging away day by day, mostly doing fine. I've been spending a fair amount of time getting my labs done, having my PICC line dressing changed, organizing all my meds, injecting myself with neupogen and running interference between my Kaiser team and my Stanford team. I'm mostly having labs, procedures and prescriptions at Kaiser Oakland and Berkeley which saves me (and my friends who drive me) time and energy. But, I do have a few more appointments at Stanford over the next few weeks, so we'll have to steel ourselves to the unending traffic. Even though Stanford is only 40 miles away, it can often take 2 1/2 hours to get there or return from there. No wonder the Stanford folks required that I stay in a nearby hotel when I was discharged from the hospital but not yet discharged to home. Just in case I developed another episode of CRS (Cytokine Release Syndrome) or ICANS (neurotoxicity) like I did when I was hospitalized after the CAR-T infusion. Although these and other side-effects can still happen to me at home, it's less likely as time goes on.

My platelet count and my neutrophil count are both significantly low. My platelets are 33, normal range is 140-400. My neutrophil count is 0.6; normal range is 1.8 - 7.9. As a consequence, I'm being closely and frequently monitored fairly to see if I need a blood or platelet transfusion. I do get fatigued more often, and I also get chilled throughout the day since I'm so anemic. However, it doesn't stop me from taking my daily 1 1/2 to 2 mile walks every day as long as I bundle up.

On a positive note, earlier today I had my PICC line removed from my right arm. It's been my "companion" since April 19. It was a very quick procedure including pulling the line that went up into my arm and snaked down into my chest. As one of the Kaiser case workers explained, even though it's easier to draw blood or give infusions through the PICC line, it's also a liability since there can be infections or complications if not kept clean and dressed properly. Without the PICC line, as several nurses observed, I am an "easy stick" because my veins are so prominent. My PICC line looked like two large insect anennas sticking out of my arm. I also had to put on a bright blue plastic sleeve over my PICC line arm whenever I took a shower. That looked like I was wearing a billowy water wing. I can't wait to take a shower without this encumberance!

Another "companion" that I'm seeing less of is my bright pink HEPA mask. I now only have to wear it whenever I'm going into a hospital or clinic. Otherwise, I can be mask-free whenever I'm outside and keeping social distance from anyone. Because my immune system is almost non-existent at this point, I have to be extremely cautious about getting together with anyone -- precautions much like what I did around COVID: masks, testing, social distance and keeping outdoors.

That's all for now. I'll keep posting now and then. Hopefully my absence will mean I'm just taking it easy.

Pink-flowering Currant (Ribes sanguineum var. glutinosum). Joaquin Miller Park, Oakland.