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July 6, 2025 Bryce

Hospital Stay

I was admitted Tuesday, June 24th. The first three days were pretty uneventful – standard chemo I’ve already had the pleasure of experiencing, a lumbar puncture, and Inotuzumab. No surprises.

Then came Day 4 — and Blinatumomab.

“You’re young and healthy, it shouldn’t be a big deal.”

Blinatumomab is an immunotherapy that’s continuously infused over a long period, typically 28 days. It essentially ramps up your immune system and turns it loose to bully anything expressing CD19 markers. Patients start on a low dose and, if no complications arise, ramp up to the therapeutic dose after 48 hours.

However, sometimes your immune system gets a little too hyped – and you end up in cytokine release syndrome, aka a cytokine storm.

We started the infusion in the afternoon, and I immediately felt a little off – my head was hazy and fuzzy, and I had some wild visuals (which I kept to myself). Within eight hours, I was deep in a cytokine shitstorm. It began with chills and shaking, then spiked into a 102+ fever.

The infusion was stopped. A bunch of tests were ordered. Tons of IV antibiotics were administered. Nothing meaningful showed up as the cause. It took about half a day to stabilize. They gassed me with steroids and tried again.

Same story.

About eight hours after restarting, the chills came back. Then the fever. We paused the infusion again.

I knew to expect some side effects given that I was coming in with a high disease burden; it just made logical sense to me high burden = higher likelihood cytokine storm. From my research, it’s pretty common to spike a fever and pause when you first start. What’s less common, from my research, is starting and stopping multiple times and this caused me distress especially because “it shouldn’t be a big deal”.

I view my treatment as three legged stool: chemo + Inotuzumab + Blinatumomab. If you remove one of the legs, the stool falls. You don’t have a stool. You have your ass is the dirt. I didn’t want my ass in the dirt; I wanted to sit on a stool.

On the third morning, the on call doctor comes in and tells me not to worry; they’ll figure it out. I may not be recalling this correctly because of the fever, but I believe she suggested giving opiates to prevent the chills/shakes and maybe prevent the fever. This idea felt a bit like a Hail Mary and caused further distress.

Thankfully, we didn’t have to crack open the opiates on the third try. We started the intro dose of Blina again, and I was able to tolerate it for 24 hours. The team then escalated to the therapeutic dose — about 4x stronger — and I handled that too.

Get Me Out of Here

At this point I was on day 7 of my adventure and itching to get out of the hospital, but they wanted to keep me around for my second dose of Ino on Tuesday, a lumbar puncture Wednesday evening, and further observation. Ino destroys platelets and you have to have at least 50 to get the treatment. My platelets were too low, and they delayed the 2nd dose a week. I started planting seeds of get me the hell outta here. Using my master negotiating skills, I suggested they move my lumbar puncture up a day to free up my Wednesday; they didn’t oblige.

Wednesday morning, the night nurse said goodbye and added, “See you tonight.”
To which I replied,

“Not if I’m released.”
She laughed.
“You’re not getting released today.”
I liked her.

At no point was there any urgency to release me but suddenly something changed. There was a sequencing of events that flowed together beautifully which I can’t really describe because it feels weird describing them, but it felt like a well oiled machine – hospital flow state or something. Early labs -> platelets -> electrolytes -> lumbar puncture.

The APRN came in that morning and told me they would be releasing me after my LP. After a LP, you’re supposed to lay flat for a hour to help prevent headaches. They had a nurse with a wheelchair waiting at my door at the 50 minute mark; I had to tell her to slow down. She was so excited to get rid of me that she drove the wheelchair into the elevator wall.

Not sure if I owe my freedom to my master negotiating skills or insurance saying, “we’re done paying,” but either way – I was free.

Freedom

Pammy made the best spaghetti, and I basically slept through my first two days at the apartment.

Over the past two days, I’ve started feeling more normal. I’ve lost about 10lb of water weight from being off steroids, I’m walking a couple miles per day on a treadmill, and we’re beginning to venture out as energy and blood counts allows. I’m at MDA right now – my counts are suppressed but look decent.

Blood Products

When I reflect on my life, I don’t have many, non-financial regrets (eg penny stocks). But one that sticks with me is never donating blood.

In college, sororities would send packs of girls to the fraternity house looking for donors – I made excuses.
At work, blood drives came and went – I was “too busy.”
I had plenty of opportunities. I just never followed through because I was selfish and maybe a little scared.

In leukemia part 1, I received over 30 units of blood and around 10 units of platelets. (I think it was 34 and 11, but I lost count.)

This time around, I’m hoping to consume less.
My goal: blood neutral.

I can’t donate anymore – but if you do, please let me know.
I’d love to keep a score and hopefully encourage more donation than I’ve consumed.

The Running Tally

• Red blood cells consumed: 1
• Red blood cells donated (on my behalf): 1
• Platelets consumed: 1
• Platelets donated: 0