The Bright White Light is All Around Me
Posted: 2026/06/10 Filed under: Uncategorized | Tags: cancer, chemo, chemotherapy, health, life, stem-cell-transplant Leave a comment
There’s too much politics and general Demise of Democracy to talk about so let’s not go there.
I’ll try to tell some more of my cancer journey….now I’ll talk about me! Picking up where we left off in January, I had decided to go forward with an allogenic stem cell transplant after failing two other treatment regimens.
Two weeks after I got married, I began a brand-spanking new therapy, epcoritamab. What is epcoritamab, you ask? Well, according the the National Cancer Institute, it’s “a bispecific T-cell engager (BiTE) antibody used to treat specific relapsed or refractory B-cell lymphomas. It works by simultaneously binding to CD3 on T-cells and CD20 on lymphoma cells, directing the immune system to destroy the cancer.”
Pretty bad-ass, huh?!
So for 3 months, I went to the hospital every week and got a shot of this stuff in my abdomen and an infusion of something or other (so many infusions….). And this went on all summer.
Meanwhile, I was mentally gearing up for transplant. I didn’t know what to expect and my team was pretty tight-lipped about everything except the medical process. I knew that the epcoritamab had to get me in full remission before we could start the long, complicated transplant and recovery process.
I knew this anti-body therapy would be followed by another scan and a week of pre-treatment including more chemo and full body radiation, assuming I ever got in remission. All of this get me to Day Zero.
What no one told me was what it would be like after transplant. What would recovery look like? Three months? Six months? A year…? No one prepares your for how your body feels or the weird things that you catch. More on that later…
There were “the usual” work-up of tests before chemotherapy. Echo-cardiogram. Another biopsy on my chest. Cardiovascular stress test, dental clearance, yadda yadda yadda. They also take a shitton of blood and analyze all the components, down to specific types of immune system cells. Oh, and a full analysis of a dozen or so genetic characteristics they’d use to match me with the mythical donor.
The general idea of a stem cell transplant is to kill the bone marrow completely, then engraft stem cells that magically find their way to the middle of the big bones and transform themselves into new bone marrow tissue. The theory is that blood cancers cannot be surgically removed so why not remove the mechanism that produces them (or over-produces them, in the case of lymphoma) and put in one that works.
What’s tricky is that the bone marrow doesn’t just make blood cells, it makes all the cells that comprise one’s immune system. What you’re getting is a new blood factory and a new immune system. The danger is that the new immune system, feeling out of place and threatened, will attack the body and try to get rid of it. Or, the new system, being so restrained on immunosuppressants will not be able to fight off viruses, bacteria or fungi. Not to mention the latent viruses that hide out in everyone’s body…Fun stuff.
So anyway, there’s a worldwide donor database and thanks to the power of modern computing and what’s most likely just a huge Excel spreadsheet, they sort your info to find the best match. Pretty cool. This was probably the biggest and most crucial hurdle to clear as the quality of the match determines your recovery progress as well as survivability.
I kind of watched in third-person awe as I went through all these things. The shots and transfusions became routine and I got chummy with several of the oncology nurses at the Winship infusion center. I continued to work. We went on vacation. The 15-minute drive became rote. I learned personalities and patterns. It was all so normal-ish.
The genetic panel came back and there were strands of numbers and letters in each of the dozen characteristics. I had no idea what I was looking but I assumed each strand represented what my genetic make-up was and how it was unique to me. Boy, there were lots of numbers, letters and special characters…kinda like passkey passwords.
I like to think that they then just stuck that card in a magic computer somewhere and out came the name of a donor. Well, it was not far from that but the matching output anonymously listed about ten of the best candidates with information on the quality of their specific genetic characteristics. There were two perfect matches. So we went with the one my doctor thought was the prime candidate, a 40-year old German man.
He was quickly nicknamed Hans and we became Team Hans.
I had my final scan and to everyone’s surprise, I came out as cancer-free. The epcoritamab had worked. The donor was a perfect match. My heart and lungs were ready to go. Everything had lined-up perfectly. I was a bit shocked but ready to move forward.
A little side note on the new drug: There were two of us at Emory who were the first patients to get it. I was the first patient there to run the full treatment course and do it successfully! We asked what the outlook was to just continue the shots indefinitely. Besides the $36,000 per dose cost, there was no research then on their long-term efficacy. I was fine with that and somewhat relieved that stem cell transplant was not the last straw, should things, you know, not work out.
Up till now, throughout this entire journey, I had not experienced a high level of physical discomfort. Sure, there was the time during CAR-T therapy when I felt the catheter in my heart and the time during my first biopsy when the radiology team was arguing about where the big-ass, tissue-grabbing needle went, but mostly, it was just waiting and fatigue and uncertainty.
I was admitted on October 4 and had a day of rest before they started two different (strong!) chemo regimens. The idea was to kill any cancer cells left floating around in my body or newbies that had grown since I stopped the shots. I developed a horrible, flaming rash on my back and there was crushing talk of postponing. This was Friday. Hans was scheduled to make his donation in Germany on Saturday. Cells on the plane with a courier to the US on Sunday. Arrival at Emory Monday. Transplant on Wednesday. It was all lined-up, we had checked every box. A rash? A fucking rash? Are you kidding me??
I will never forget the face on the physician’s assistant the next morning as she came bounding in – she was beaming! She said, “I did some really deep digging in your chart over night and found you had this same reaction to the same chemo during CAR-T. It’s fine. Nothing to worry about. We’re a go.”
Monday was full-body radiation and for the first time, I got sick — a long afternoon of vomiting and feeling awful and stale numbness enveloping my physical being.
But then Wednesday rolled around and things were oddly quiet and peaceful in my room. I put on some chill music like I had done every day. On her rounds, the lead nurse asked if I was ready, and I said yes and she said, OK, we’ll be back around 10:30.
It was all very anti-climactic. She and a nurse she was training came in, shut the door, made me verify my identity. They cecked my drivers license against the bar code on the Fed-Ex box (which had not even been opened). They then opened the box and pulled out the little pouch of blood product – stem cells spun out of Hans three days before. We reverified that I was me. An IV was hooked up to my hand and then to the bag. The needle went in, the check valve was opened and the transplant began.
There it was, my new immune system, dripping into my arm. As we liked to joke, Hans was now inside of me.
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! 