Bryce
Cycle 3 Update
It’s been a while since my last update. A few of you have reached out to check in – that means a lot to me. Thank you. Not a whole lot has happened lately… which I guess is a good thing?
I wrote my last update while inpatient for Cycle 3 and mentioned how Floor 19 felt way more relaxed than Floor 20, where I had Cycles 1 and 2. One of the more annoying mandates of Floor 20 was the twice-daily antibacterial wipe-downs. Every morning and evening: “Have you done your wipes? No? I’ll sit here and watch you do it.” Floor 19? Didn’t even include wipes in my welcome kit.
Turns out, Floor 20 might’ve been onto something – because I developed folliculitis, a bacterial infection of the hair follicles. According to the nurse, we all have bacteria on our skin, but in my immunocompromised state, I didn’t have enough soldiers to fight them off. Her guess? Caused by sweat.
But Bryce, how do you get sweaty in a hospital?
Great question. In my last post, I mentioned that the floor offers MMs if you walk at least three laps a day for four days. Now imagine being on steroids and being promised MMs. I wanted those MMs. I needed those MMs. I didn’t know who the MM fairy was, but I made it my mission to walk constantly – pushing my IV pole 3–4 miles a day – hoping to rack up enough stickers to earn my prize.
All that walking (and steroid-fueled ambition) got me sweaty. I showered, but apparently, not enough. I came up one day short of qualifying for M&Ms. Not because I didn’t walk – but because the M&M fairy didn’t see me walking.
So, instead of leaving with candy, I left the hospital on Day 5 with folliculitis all over my chest and back.
Ten days of antibiotics cleared it up.
Slow Recovery
The recovery after discharge is already kind of a blur. My platelets struggled to bounce back, and I needed four bags the week after release. Since then, they’ve been climbing – but slowly. Like “1 point per day” slow.
My platelets need to hit a certain threshold to qualify for Inotuzumab. While they’ve technically been above that threshold the past few weeks, they’re not climbing fast enough to keep the team comfortable. So, they’ve delayed the start of my next cycle. Again. And again.
We’ve now driven to Houston twice only to be told they want to wait another week. It’s frustrating. To be fair, the APRN warned me that I’d probably be too low each time – but I didn’t pack enough meds to stay home for multiple extra weeks. And during the first delay, I was barely above the platelet cut-off. Dr. Jabbour even offered to admit me last week, but advised against it.
He assures me that it’s okay to wait because I’m both MRD- and NGS-negative.
Old Bryce — Leukemia Part 1 Bryce — would’ve pushed forward no matter what.
But Leukemia Part 2 Bryce? I’ve really enjoyed being home with Alice and MB.
Alice is… fun. MB’s been telling me she’s fun for months now. I just hadn’t seen it. But now? We laugh, play, chase each other. I genuinely enjoy her. And that’s been a gift.
Delay Maths
What’s not a gift is this schedule.
Assuming I finally start Cycle 4 next week, I’ll be three weeks delayed. Let’s do some math:
If a 4-week cycle is now taking 7 weeks to complete – and I have three more cycles before CAR-T – how long will this drag out?
Answer: Forever.
I saw the “dose dense” finish line in December. Now? Who knows. The finish line’s a moving target, and I’m just trying to keep up.
In Leukemia Part 1, once I hit the halfway point, I knew what to expect. I had momentum. I just had to grit it out.
Now? It feels endless. I’m not even sure I’m halfway. The delays, the platelets or lack thereof – they’re wearing on me.
But I Rode Anyway
On the upside: physically, I’ve been feeling decent. Well enough, in fact, to go mountain biking last week.
Would my team advise it? Absolutely not.
Could one crash while neutropenic and low on platelets kill me? Absolutely.
But that kind of risk – it made it exhilarating.
I rode scared and cautious, which made me ride worse than usual – and I’m not good to begin with. Still, I did a couple of runs, hit a few jumps at the skills park, and for a moment, I got to pretend I’m normal again.
What’s Next?
Dr. Jabbour gave me some injections this week to boost my neutrophils, and the “plan” is to admit me Thursday for Cycle 4.
Plan.
We don’t really make those anymore – everything changes by the day. I’m not exactly looking forward to it. It’s a B/even cycle, and the last one wrecked me. I’m expecting this one to be worse, since my platelets are already running on fumes.
Let’s hope I can at least get my damn MMs this time.
The Running Tally
Sorry if I’ve left someone off. I thought I could remember, but turns out my memory is trash.
- Red blood cells consumed: 1
- Red blood cells donated (on my behalf): 34, +5 from the last update thanks to Tessa x2, Mary x2, and Loretta
- Platelets consumed: 11, +4
- Platelets donated: 1, +1
So happy to hear you’ve been able to get some QT with MB and Big Al! Here’s to maximum M&Ms and minimum sweaty days (that are out of your control)!
Thanks for the update, Bryce! I’m sure the uncertainty of all this is just the cherry on the shit pile. I hope the drive to/from Houston has anything at all to recommend it. But I have really enjoyed seeing the pics and videos of you with MB and Al. I’m sure they have loved having you around, and hopefully that nice respite is enough to recharge and make the next bit more bearable.
Thinking of you all the time, man, I hope your body doesn’t throw any new shit at you between now and the next update.