CAR-T Update

August 28, 2025 Bryce

The Good News Keeps Coming

After Mayo delivered the bad news that they couldn’t give me CAR-T because I was NGS-negative, we stuck around Rochester for a few days to wrap up additional testing and consultations. Once Monday rolled around, I started calling my patient navigators at Healthscope and Blue Cross Blue Shield to get the change-of-venue appeal rolling. Both were kind of unhelpful, if I’m being honest, but at that point it was going to escalate beyond their paygrade. Separately, my brother-in-law, Luke, who works in insurance, was making calls on my behalf to get contact info for the VP of the Walmart account at Blue Cross.

Through this process, I learned that Blue Cross is just the administrator of Walmart’s insurance and that Walmart is actually self-insured and the ultimate decision maker. Which means someone within Walmart would be deciding if I get a more affordable CAR-T with a 90% survival rate at MDA, or a more expensive allogenic transplant with 60% survival and potentially devastating lifelong complications at Mayo.

Now, I’ve worked at Walmart long enough to know: logic and policy don’t always overlap. In case things went south, I had already drafted an email to the Sam’s Club CEO — complete with a cost-benefit analysis — and was prepared to escalate via the Executive Open Door. Potentially career limiting, but I gotta live to have a career.

We flew back to Houston Wednesday. I heard that the Walmart VP was “waiting on a letter from Mayo” and that I should “hear something shortly.” Translation: you’ll hear something eventually… if we feel like it. I kept calling. Morning. Afternoon. I’m sure they were getting tired of me calling each morning and afternoon for updates—but whatever. My definition of “shortly” is very different than theirs.

“What do you want to do?”

Thursday morning, Dr. Jabbour walked into the room and threw his hands up: “What do you want to do?”
Not exactly something you want to hear from the greatest leukemia doctor in the world. It’s like your plumber asking you what you should think they should fix. “I don’t know man, I just want my toilet to flush.”

We all just stared at him. He then launched into his bi-weekly “insurance is terrible” sermon. He and his team shared the trial info they’d already sent to Mayo, as well as published data showing CAR-T outcomes are better in NGS-negative patients—which led to some choice words about Mayo.

I told him about my insurance calls and proposed waiting to start Cycle 3 in case we got approval in the next few days. We even floated the idea of self-funding what the trial didn’t cover. He agreed — we’d hold off a few more days.

It’s worth noting that I really really liked my leukemia Dr at Mayo. I don’t agree with their decision, but ultimately it was the organization that said no, not my doctor. He’s been helpful advocating on my behalf to insurance and has send several follow-up messages and calls to give me updates.

Approval. Sort Of.

Friday morning, my Blue Cross navigator called to say they’d agreed to cover “supportive care,” which includes the hospital stay. I asked what all “supportive care” entailed. Her answer? Politician-level vagueness. I asked whether a formal letter was being sent to MD Anderson. More dodgeball.

I messaged MDA with the update. Their finance team hadn’t seen anything official and couldn’t move forward without documentation.

Called the Blue Cross navigator again — she was out of office until Tuesday. Of course.
Called her backup. She said MDA needed to call her boss.
Called Healthscope. She wasn’t sure of the status of anything and needed to call Walmart.
Called MDA. Told them to call the Blue Cross guy.

Finally, at 5:30 p.m. Friday, MDA gave the all-clear. We were approved.
Will I get hit with unexpected bills later? Highly likely.
But Bitcoin’s going to a million, right? I’ll be fine.

Cell Collection

There wasn’t enough lead time to schedule appointments for Monday, so Dr. Jabbour’s nurse worked her magic and got everything scheduled for Tuesday.

My morning began with labs at 6:40 a.m., followed by a catheter insertion in my neck at 7:20.

Anxiety was high. Historically, I haven’t enjoyed foreign objects being inserted into my body. The nurse gave me a lidocaine shot in my neck—new territory. Neck shots are weird to think about. If you’re getting a shot in your arm, leg, back, butt, etc, they’ll eventually hit a bone and have to stop pushing. Theoretically, in you neck, they could push the shot out the other side of it. That was just one of those random thoughts that crossed my mind as the needle was going into my neck. Lidocaine feels like a wasp sting, and this was no exception. She told me to let her know when the stinging stopped as she rubbed the area. I answered too soon—it had gone from a 7 to a 2, which, relatively speaking, felt “done.”

“That was quick,” she said. Uh-oh. I assumed there’d be a delay before the procedure started, but she jumped right in. Moments later, she cut into my neck and began inserting the catheter into my right jugular. Pain-wise, it wasn’t too bad after the initial slice, but the pressure in my chest as the tubing approached my heart was not pleasant. Nor was the feeling when they expanded the tube to make way for the catheter. The whole thing was fast, but the dull, constant pressure in my neck from having something thicker than a straw jammed in there sucked.

Afterward, we walked to get an X-ray to confirm the catheter was in the right spot—thankfully, it was. Then we walked back to the vascular floor to report in. Once cleared, we headed to see Dr. Jabbour, then a CAR-T consultation, an EKG, and finally, cell collection at 11:30.

That part was easy. I laid in bed for 4 hours playing Settlers of Catan on my iPad.

After collection, we returned to vascular for catheter removal. The nurse who inserted it had promised removal was much better than insertion. She’s a liar.

Most people have the catheter for a couple of days. Mine was same-day, which may have made a difference. The extraction nurse told me to take a deep breath on 3 and bear down like I was trying to dump (her words, not mine). Then she pulled it out. I felt every inch of it exit my neck. My whole body tensed. I gripped the bed rail and groaned like I was in labor. She said she was done and that I could relax—but I physically couldn’t for a few minutes. Meanwhile, she was pushing on the insertion site to seal my jugular. That also hurt. I told her I could relax if she stopped pushing on my neck. She said she’d be pressing on my jugular for another 15 minutes. Cool, cool, cool.

Eventually I started laughing uncontrollably. Not because anything was funny, but because I had two choices: laugh or cry. My nervous system chose laughter. Back in my public accounting days, I had a manager who used to say, “We can laugh about it or cry about it.” Shoutout, Ashley — your wisdom lives on.

Jabbour knew I’d be wrecked and delayed the start of Cycle 3. At first, I was annoyed. Then I had a NA beer, took a pain pill, and realized: thank God.

Artifact, Infection, or Super Mutation

After the Mayo heartbreak, we stuck around for additional testing. One was a PET scan follow up. PET scans lights up hot spots in your body based on radioactive sugar consumption. Basically, it makes you glow in the dark for science.

Two areas lit up:

1. A Molar

My implant molar clocked a score of 6.2.
Quick backstory: I skipped the dentist during my 6 years of collect.
When I finally went, I chose a Dallas dentist who played EDM and gave out cool shades.
Great untz untz untz’s. Terrible dentistry.
He capped my molar, poorly. It decayed further. I needed an implant. During Leukemia Part 1, bone loss exposed a few threads of the implant, which became a bacterial rave cave. Without neutrophils, it turned into a small infection that was on the med and lit up on the PET scan. Fortunately I was able to schedule to get a deep clean around in the implant while at Mayo to eliminate the rave cave.

2. The Spine

More concerning: a hot spot at T12 with a 5.8 score.
Under 5? No one cares.
Over 5? Investigate futher.

I saw a neurologist. No tingling. No weakness. No balance issues. No issues with going to the bathroom. But I had been dealing with back pain since a traumatic lumbar puncture a few weeks ago. That was enough for her to recommend an MRI.

The MRI confirmed something. A vague spot next to my spinal cord at T12 that only appeared once contrast was applied. ChatGPT tells me leukemia lesions usually show up with defined edges, pet scan scores > 10, and with and without contrast. So… maybe a lesion or maybe not a lesion?

Biopsy isn’t an option — too risky. So we’re taking the dreaded “wait and see” approach.

If you know me, you know “wait and see” is my least favorite phrase and a major source of anxiety. I’m basically the J.G. Wentworth of health:

“It’s my spine and I want answers NOW!”

But here we are.
Waiting.
Wondering if it’s my super mutation creeping into my spinal cord…
Or just a nothing burger.

Praying for the latter.

Cycle 3 Commences

Cycle 3 began yesterday. Not much to report yet — the main update is that I’ve been moved to Floor 19. So far, it’s significantly more chill than Floor 20. No one’s swabbed my butthole, and no one’s labeled me a fall risk… yet. They’re even promising me MM’s if I walk at least 3 laps a day for four days.

At this point, those are the only two notable developments — and I’m counting that as a win.

The Running Tally

• Red blood cells consumed: 1
• Red blood cells donated (on my behalf): 29, +1 from the last update thanks to Sue Spear
• Platelets consumed: 7
• Platelets donated: 0