April 23, 2023
April 20 is yet another birthday for me. My first one is my actual birthday (November 26). My stem cell transplant on December 12, 2017 is considered my "second" birthday. Now, I have a third birthday: April 20, 2023, the day of my bioengineered T-cell infusion. The staff came in to wish me a Happy Birthday, including singing to me along with a cake. Unfortunately, because of my strict low-fat diet, I could only eat a small bite. And, because of strict quarantining, I couldn't share the cake with the staff. Nevertheless, it was very touching.
I'm doing ok-ish. I'm pretty wiped out most of the time. Lots of meds, tests, injections, infusions and more than enough control panels with corresponding wiring and tubes that I have to keep sorting out every time I try to get out of bed. It's a real challenge whenever I have to get up in the middle of the night to use the bathroom several times a night. I have to drag "my friend" the machine with all the wires and tubes attached. There are a couple interesting features of my bed, including the ability to weigh me even while I'm lying in bed.
The black cloud on the horizon is the looming potential severe side-effects: Cytokine Release Syndrome, Neurotoxicity and Infections. Any of which could hit within the next few days. This makes it difficult to predict how long I'll be hospitalized. I'll be here at least for the coming week. It also explains why I have both physical and cognitive daily assessments. All this is made ever so bearable by the nursing staff here. They are truly my guardian angels.
Depending on how it's going, I'll try to do another update. Again, apologies for not being able to respond to many well wishes and words of encouragement. I do enjoy hearing from you and knowing there's an outside world even if I'm temporarily shut off from it.
News and Updates from Paul