After a long, not entirely restful night, today was infusion day. Originally scheduled for 9:00 am, it got delayed until 1:30, because (at the last minute, I think) the sponsor wanted a negative COVID test before the infusion could be delivered, even though I had zero systems of any respiratory problems.
In the morning I got visited by various hospital personnel, including the physical therapy nurse, who administered me a cognitive function test — yes, the very same test give to our dumbass President, who thinks that it’s an IQ test.
It was a very embarrassing experience. After the test the nurse returned to me, tears in her eyes, and she said, “Sir, that was the most brilliant test anyone of us have ever seen. Even better than our 21-year-old Stanford cosmic physics students. We can’t understand, sir, how you managed it. Many of the other patients on the floor gave up when they saw your test, they said it was the best.” Being humble by nature, I was mortified, but someone has to be the smartest person in the world.
(As an aside, the PT nurse was an intelligent, charming, engaging woman who was Iranian. She was born in the US but spent most of her young years in Iran. The very kind of person you’d hope would chose the US as a place to live and contribute. I thought of how hard it must be for her in this insane time we’re living in. Screw Trump, screw MAGA. This concludes my {political} aside.)
The infusion went off without a hitch. The infusion bag was a tiny thing, just 27.5 milliliters I had to have a few drugs given to me an hour before, including Benadryl, to offset possible allergic reactions to the infusion. That zonked me out pretty good, which wasn’t entirely a bad thing, since I ended up taking an hour-long nap afterwards. Now, four hours after the infusion, I feel absolutely normal.
Given what I know about my treatment and CAR-T treatments generally, it’s likely that the more concerning reactions — if they happen — will occur with the next few days or weeks, as the T-cells modified by the viral agent I was given start to kill of the cancerous myeloma cells, causing cytokine release syndrome, which I’ve discussed previously. Not everyone gets it, and some that do have only mild symptoms, so I’ll have to wait and see.
Suzie, as always, has been a fabulous support and companion this process. I’m hoping I continue to feel normal this evening so she can go to the apartment and get a good night’s sleep, which eluded her last night.
I’m still marveling over the incredible medical advance that this treatment represents, and feel lucky to have been able to participate in its early testing. Some day it may become a treatment for myeloma that is much cheaper and easier to access than existing CAR-T therapies. I feel good thinking that I’d be a part of that progress.
I’ll close with a couple of pictures, the last one taken by my wonderful nurse. Every single staff member here at Stanford has been top-notch. So … roll you Bears, for sure, but I just can’t not appreciate the professionalism and kindness of the people down.
Keep sending good thoughts and wishes, each one is appreciated.
Categories: Blogging
I am just so happy you are getting to participate in this clinical trial! I am thinking good thoughts for smooth sailing, and more MAGA-trolling, ahead! Go Steve!
Steve, such good news..keep it going
So happy to hear your great attitude. And you look mahvelous!!! You’ve got this. 🥰