You Man the Island and the Cocaine and the Elegant Stars
Posted: 2026/01/08 Filed under: Uncategorized | Tags: cancer, chemo, chemotherapy, health Leave a comment
Pill regimen, November 2023. Drugs used to be fun!
Sorry to jump around on the cancer story. I guess I spoiled the outcome…
Anyway, the Summer of 2022 was pretty good. I assumed the indeterminate scan results would work themselves out and I’d be good to go in the Fall. I quickly got back in shape on the bike and focused on our new living arrangement, which while frustrating at times (two 50-year old men don’t change habits too quickly), was going pretty well.
We went to the beach in September, a nice tradition we had started before COVID. I had 6-month scans just before we left and felt good about it. My husband was traveling so I was solo for a few days, working and taking the dogs to the beach. Life was good.
Then an email popped-up that I had test results. The scans. I opted not to wait until the call with the oncologist to look at the results. I read the synopsis and everything around me closed in and went silent. It was back and it was back in my abdomen and again in my chest.
I went into panic mode. I googled just about everything possible and figured that I was not long for the world. That my chances of making it past a year were slim to none. It was dark. Dr. Google is never an optimist.
The call with the doctor made things a bit better. He said “You still present well,” meaning, you’re not on death’s door and you’re in fairly good shape. I was resigned to a bone marrow transplant and the agony that would entail. “Well, I don’t think that’s necessary.,” he said. “There is a new genetic modification we can do on your t-cells which programs them to fight cancer cells. We extract them, program them, then re-introduce them to your body. It’s highly effective and there’s minimal risk.”
Hell yeah! Sign me up.
The two months between that call and admission were a complete mind-fuck, though. I had discomfort in my abdomen which I was convinced was the tumor expanding and taking over. We avoided the subject and went to Idaho to mountain bike and took a long weekend in California wine country. But inside, I was as anxious as I’ve ever been. I remember being on the plane, doubled over, thinking this was my last good trip. When we got back from Sonoma, I basically begged for “bridge therapy,” a dose or two of chemo to get me to treatment. The doctor agreed and I steeled myself for whatever was next. I was admitted the day after Christmas.
CAR T-Cell Therapy was also pretty easy for me. The danger is Immune Cell Associated Neurotoxicity (ICANS) which is your body releasing cytokines in defense of what it thinks are foreign t-cells. It manifests as flu-like symptoms and can affect cognition and motor skills. It can also, in untreated cases, be fatal, so they keep you in the hospital for a week to monitor all that. I passed with flying colors…until the day I got home. I crashed and burned ( 103-degree fever) and had to limp into the hospital for fluids and blood work. But that was it. Within a couple weeks, I felt great and was back to living my life. Cancer seemed manageable.
Then we had post CAR-T scans at 3 months. There had been little change in tumor size. The therapy failed. I was one of the 35% who don’t come through successfully.
The only option was an allogenic (donor) stem cell transplant preceded by a rough summer of really strong chemo to kill all the cancer (and hopefully not me).
Shit got real when my oncologist passed me on to the stem cell specialist. I had met the doctor during the first rounds of chemo and argued with him about having to have a anti-blood clot shot in my abdomen. There was a bad taste in my mouth but after the first meeting, I found him to be easy going, smart, relatable, and most importantly, able to manage my need to know everything about everything.
I pulled the trigger on the transplant Memorial Day weekend, 2023. We were in Vermont to get married, which felt very much like a shotgun wedding but with death as the motivator.
I’ll never forget being parked at the side of the road and talking through with the doctor what lay ahead. Heavy chemo as soon as you get back. More scans. Genetic testing. Heavier chemo and full body radiation just prior to transplant. Chemo afterwards and no immune system. A month in the hospital. A shit ton of pills. And then it might not work.
He closed the conversation with, “One more thing. If you can wait a week or two, there’s a new bivalent antibody treatment we’d like to use instead of chemo to get you in remission prior to transplant. The FDA just approved it and we can prescribe it starting Thursday, June 1. It shows great promise. You’d be our first patient.”
Why not? There was nothing left to lose. Less chemo? A simple shot, once a week, I could do that. Bring it.
JohnBrownJohnBrown! 