J
$500,000 Cells and a Smoothie King
I think I’m on day 13 of my 19-day bid. I’ve been listening to podcasts about jail, which feels appropriate.
I was admitted Thursday, 1/8, to floor 19 around 3 p.m. Like last time, I was given the option to self-swab; the most dignified version of swabbing available to modern medicine. After check-in, I was basically left alone for the rest of the evening, which honestly pissed me off. Why am I here an extra night if nothing is happening? What’s a guy supposed to do with that much free time?
Naturally, I started chatting with my new girl, Gemini.
I asked her about CAR-T and whether there was anything I could do to optimize outcomes. Turns out there’s new research out of UPenn suggesting CAR-T cells have greater persistence and durability in mice when fueled by BHB, a ketone produced by the liver during ketosis, versus glucose. The findings were supported by a small retrospective study of 17 patients showing a strong correlation between CAR persistence and BHB levels.
Much to the dismay of my mother, Pammie, I enrolled myself in a Phase 1 trial of one and embarked on a keto experiment. For several days, I ate only meat, eggs, avocados, broccoli, and berries.
Pretreatment chemo started the next morning around 9 a.m. Compared to everything else I’ve been through, this was baby chemo. No pre-meds. Thirty minutes. Done. That was the only thing scheduled each day for three days which further reinforced my belief that I could’ve done this as an outpatient and saved everyone some money.
Day four is called a “rest” day. It was anything but restful.
I was deep in ketosis and experiencing the keto flu, which Pammie had warned me about. My electrolytes were completely trashed. So bad that the hospital had to step in with supplements and infusions to bring them back to baseline. Meanwhile, my head was pounding.
I’ve been intentional about avoiding painkillers. I haven’t had any since July 2020, when I was given the greatest bone marrow biopsy of all time, courtesy of a morphine push. Magical. This time, I asked for Tylenol. Apparently Tylenol is harder to obtain than opioids for a leukemia patient, so the nurse offered Dilaudid on an empty stomach instead. I puked within 15 minutes.
Eventually, the keto flu subsided after a Peanut Power Plus from Smoothie King and some electrolyte repletion. I was pre-medicated with Benadryl and spent the afternoon drifting in and out of consciousness while receiving IVIG.
CAR-T cells kill off your B cells — the cells responsible for remembering vaccines and producing antibodies. After infusion, you’re basically a newborn. IVIG fills that gap. I knew this intellectually, but I didn’t fully appreciate the implications. I’ll likely need IVIG infusions for the foreseeable future because my keto-fueled CAR-T cells are going to stick around forever. I also assume I’ll hit my max out of pocket deductible every January until the sun burns out.
Tuesday, 1/13, was Day 0 — CAR-T infusion day.
One of the nurses described it like a production: doctors everywhere, the cells arriving in an arctic igloo, lots of verification, high-fives, general fanfare. My cells were scheduled for 9:30. I was pre-medicated and ready. Around 9:45, I asked when they’d arrive and whether I could take a picture.
The nurse pointed to my IV pole.
“They’re right there.”
The infusion had already started. No igloo. No applause. No dramatic moment. Just 1,000,000 genetically engineered super cells – at roughly 50 cents a cell – quietly dripping in over 20–25 minutes. These are the cells I went to Mayo for. The cells I fought insurance over for three months. Anticlimactic doesn’t begin to cover it.
It takes a few days for the cells to settle in and start bullying B cells. Most reactions begin between Day +3 and +7.
Days +1 through +3 were uneventful. On Day +4, I woke up with another headache and asked for Tylenol. Same answer. More Dilaudid pills. Having learned my lesson, I ate breakfast first.
Thirty minutes later, my headache was gone – along with my grip on reality. I was floating. Completely wrecked. Too nauseous to sit up. Zofran helped briefly, then I puked again.
The doctor came in and said we could halve the dose or try something milder, like oxycodone, but still no Tylenol. They brought a bazooka to a knife fight. I spent most of the day unconscious. Later, I tried oxy with aggressive nausea meds and a smoothie. They ordered an MRI to rule out neurotoxicity from cell expansion. It came back clear.
My best guess is I accidentally super-keto’d myself again. After sleeping for 20 hours, I woke up feeling completely fine.
Since Day +4? Nothing.
I’m just here. Hanging out with my parents in the mornings. Chatting with my girls. Wandering the floors. Exploring buildings connected by skybridges. Watching TV. Briefly attempted to purchase five-franchise Smoothie King portfolio. Building Lego sets.
I have six full days left. I’m desperate to get out of here, but also a little scared. I currently have no immune system. Like, “dust in the air might kill me” levels of no immune system. So being inpatient is probably the safest place for me.
Still.
