I’ll Fly Away
Posted: 2026/06/19 Filed under: Uncategorized | Tags: family, grief, life, love Leave a comment
I decided this year to make some effort to acknowledge Father’s Day, a holiday that quite frankly, seems made-up to me. But I’ll own it because I think occasions are important and this is the first without my Dad.
My grief has not been what I imagined it would be. I’ve not been incapacitated. I’m not despondent or lost. I’ve not been overly depressed. I don’t weep at the slightest mention of him. Rather, my mourning has been measured, intentional and mostly rational. A pretty close reflection of him, I guess.
I ask myself why I’ve reacted the way I have. I wonder if I should be more….sad, broken, inconsolable?
My Dad was one of my heroes. He was the strongest man I ever knew and he could do anything, it seemed. He wasn’t afraid to stick up for Black folks during the Civil Rights era and got fired for it. He rarely held his opinions to himself. Dad loved to bird hunt and was a great shot. He was genuinely fascinated by God’s creation and devoted his life to figuring out the parts that he could.
We had some fundamental differences. Young adulthood was not easy for me, trying to get out from under his constant “no, we can’d do that” refrain. I am certainly not a “no” kind of person. The word, for me, has become a challeng, not an answer. He is responsible for this.
“No, you can’t go out of state to college.” I got accepted and found a way to pay for it.
“No, you can’t go on that travel camping trip out West.” I mowed lawns, I babysat. I made it happen.
“No, you can’t be happy and be gay.” Bullshit, watch me.
I think he came around after he and I struggled with me coming out. I know for a fact that he ended up deeply respecting me for living my life true to myself. There’s not much more a child can ask for.
Mostly, Tom Brown, I miss you. I miss your integrity. I miss calling you and hearing the excitement in your voice when I told you what I was up to. I miss your terrible, corny jokes. I miss how excited you got when we went crabbing at the beach. I miss the smell of your St. John’s Bay rum aftershave. I miss that big, guffah laugh (mostly at those same jokes). And I miss the quiet moments when you and Mother held hands.
I love you, Dad.
P.S. We found a string quartet to play “I”ll Flay Away” at your funeral, smack dab in the center of the Cathedral, in front of the Dean and everyone. You indeed had the last laugh.
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.
JohnBrownJohnBrown! 