Trip Home
Last Tuesday, I received another bag of platelets – my sixth in seven days. Fortunately, it was the last one I needed this cycle. On Wednesday, I went in for labs and a new bag of Blina. My platelets had jumped from 16 to 72. The nurse said she’d never seen a jump like that – about time.
With platelets and neutrophils finally improving and hemoglobin holding steady, we packed the car and headed to Arkansas for the week.
About an hour away from Bentonville, Mary Beth called to tell me Alice had taken her first step. So… I missed it. Barely. But I did get to see steps 7 through 300. Watching her figure out walking was amazing – giggling, beaming with pride when she reached you. I was there long enough for her to get comfortable around me again. MB is still the favorite by a mile, but I managed to score some rare cuddles usually reserved for her.
It was a great week. I was exhausted due to low HGB and napped a lot, but in between, I got to hang with Alice and MB, take a long walk at Coler with Ross, and see my brother/sister-in-laws who live in Spain. We even squeezed in a game of Settlers of Catan that I technically won (tied, but I was ahead when we paused).
Mayo
We drove back to Houston Tuesday so I could get disconnected from Blina on Wednesday. Once unhooked, we caught the last flight out of Houston to Minneapolis. The flight was delayed an hour, then canceled, then reinstated and eventually took off 90 minutes behind schedule.
Our arrival at MSP was a race. I had a rental car booked, and the desk closed at midnight. We landed at 11:35. Time to divide and conquer: Pammy waited for checked bags, I ran for the car. The main Hertz desk was closed, but I made it to the “Presidential” desk at 11:55. Anything labeled “Presidential” makes you feel briefly important, so I was hoping for an upgrade from the small SUV I booked. Instead, I got a Toyota Corolla. I was too tired to care.
After an 80 mile drive, we made it to the hotel around 1:30 a.m. and caught about four hours of sleep before my 7:20 a.m. appointment at Mayo.
First Impressions
Mayo couldn’t be more different than MD Anderson. The buildings are sleek, bright, and vaguely Scandinavian – probably designed to help people fight seasonal depression and existential dread at the same time. My hematologist’s exam room looked like an art deco hotel room: solid wood exam table, rich paneling, a comfy couch for guests. Even the exam table had a little sign saying it was clean and ready.
The waiting rooms were calm. The staff were warm and helpful. The doctors wore tailored suits instead of scrubs or white coats. It felt more like a boutique hospital than a global medical center. Though my mom and I found it odd how often we heard the pianist playing Amazing Grace seeing how it’s funeral staple.
MDA, by contrast, is congested, overpopulated, and visibly worn from years of saving lives and creating the future of treatment. I’ve received phenomenal care there, but Mayo felt personal. MDA is more DMV: take a number, hope for the best.
I came in annoyed – insurance was forcing me to go. But after three days walking Mayo’s halls and wandering downtown Rochester, I was ready to buy property for future treatments and the future 2035 water wars.
The Crash
The fantasy ended abruptly.
Yesterday, I was in a gown, minutes away from a brain MRI, when an administrator pulled me out and said I needed to see my doctor. Anxiety doom spirals engaged – did I relapse? did they find something concerning? what’s more urgent than this brain MRI? Dr. Saliba walked in and dropped the news: Mayo would not be giving me CAR-T.
We’d already spent two days there. Appointments, tests, consultations. All to be told they wouldn’t move forward. Saliba is on my side, but his colleagues weren’t. The reasons?
- I’m MRD-negative
- I’m NGS-negative
- CAR-T in this case isn’t “standard of care”
- It’s just too “investigational” for Mayo
So basically, Dr. Jabbour – the GOAT – ran a trial that worked too well. My disease was wiped out in one round. And now, because I’m “too healthy,” Mayo won’t do the one thing that could increase my odds of long-term survival by another 15%.
To be honest, I half expected it. Mayo is exceptional at delivering established (antiquated) care. But they’re conservative. Risk-averse. Not exactly eager to be early adopters.
Just when we had a real plan – and even a start date – it got blown up. Now, we don’t even have the concept of a plan.
Back to the Insurance Games
Dr. Saliba says he’ll do everything he can to help get CAR-T approved at MDA. So now we’re back to begging insurance, waiting for someone to say yes.
A couple months ago, I was told that if Mayo declined, I could appeal for a change of venue. So maybe – just maybe – with:
- Insurance’s own center of excellence (Mayo) saying I should get CAR-T at MDA
- The best leukemia doctor on the planet (Jabbour) saying I should get CAR-T at MDA
- A pharma company offering to cover $500K of engineered cells for CAR-T at MDA
…maybe insurance won’t block the whole thing.
But I’m not holding my breath.
The Running Tally
- Red blood cells consumed: 1
- Red blood cells donated (on my behalf): 28, +3 from the last update thanks to Justin x2 and Katie
- Platelets consumed: 7, +1 from last update
- Platelets donated: 0
Hold up, so how much of the info that informed Mayo’s “nah bro” could they have known *before* you had a horrible stressful travel day and spent days there? REALLY seems like that didn’t need to be a meeting.
I am so sorry you have to talk more to the insurance company. Also that you can’t just get the treatment that your very good doctor thinks you should get. You must have very good mood drugs. I wouldn’t be able to type this out without hurting my laptop out the window.
I hope you get more MB&A time soon.
I remember being at Mayo with Bob. Very impressive. You described it well. Bob had appointments set up there for 3 or 4 days. After day 1 I was so ready to leave as I could tell they confirmed he had ALS right off the bat. They are the best after all.
Bryce, I am so sorry for everything you’re going through. Progress being made and then they pull the rug out from under you. It’s truly a test of what you’re made of. Keep up the fight. I have hope that your next post will have good news.
While it may have technically been her first step, you still got to have a “first time” seeing Alice walk. To your brain, it was her first steps! I wonder if Dr. J can create a new trial just for you? I’d bet you’re not the only patient he has that’s fighting with insurance over dumb things like this. He can call it “Tritt’s Trials” or “Dr. J and Mr. T’s Wild and Crazy Journey”… I dunno, something fun-sounding. Follow me for more tips. Pulling for you buddy!!!