The Bright White Light is All Around Me
Posted: 2026/06/10 Filed under: Uncategorized | Tags: cancer, chemotherapy, chemo, 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!
So, 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 I went to the hospital every two weeks and got a shot of this stuff in my abdomen then did an infusion of something or other (so many infusions….). And this went on all summer.
Meanwhile, I was mentally gearing myself up for transplant. I didn’t know what to expect and my team was pretty tight-lipped about the process. I knew that the epcoritamab had to get me in full remission before we could start the long, complicated process. I knew it would be followed by another scan and a week of pre-treatment including more chemo and full body radiation. That was all to get me to Day Zero.
Oh, and 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. 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 shot and transfusion 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 charactertistics. 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 apiece 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.
The Skies are Charcoal Grey
Posted: 2026/01/28 Filed under: Uncategorized Leave a comment
ICE agents in Minneapolis, January 24, 2026 — Stephen Maturen
It’s come to this.
I spent Sunday in a bit of a fog, no pun intended. Another American citizen gunned down for exercising their Constitutional rights. This time, their First, Second and possibly Fourth Amendment freedoms.
Plain and simple, the Trump Administration, through intent, neglect, ignorance — whatever — has upended the Constitution and proceeds without regard or regret.
My heart is broken.
The only saving grace is that I’m interested (anxious? excited? fearful?) in what comes next. As always, I’m hopeful and the citizens of the Twin Cities are fueling that hope.
This is not the end, though. I’m not fooling myself. The time will come when each of us has to make a conscious decision about the fate of our country and, ultimately, this world.
Choose wisely.
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.
Fortunate Son
Posted: 2025/12/16 Filed under: Uncategorized Leave a comment
Me, without cancer. 12/15/25
One of the “fun” things about blood cancer is that it’s everywhere — all throughout the body. With lymphoma, think Russian Rulette but with lymph nodes: maybe it manifests, maybe it doesn’t. Maybe the lymph node is in your neck, maybe it’s deep in your gut where you can’t feel anything. Maybe you’ll be sick, maybe you won’t.
So, after failing two treatments and having the the entire blood-making apparatus (bone marrow/immune system) replaced, for me, annual PET scans are a bit nerve-wracking. Is it still lurking? What’s that discomfort in my abdomen? Are my blood counts off because of meds or cancer? I’ve had bad scans and high Deauville scores before and they’re difficult to see past.
But I’m here to tell you that you can get past the diagnosis. You can get past the fear. You can get past the treatment that makes you feel worse than the disease. You can overcome the most soul-crushing disappointments imaginable.
One of my favorite Winston Churchill quotes is “If you’re going through hell, keep going.”
Indeed.
Magpie to the Morning
Posted: 2025/09/30 Filed under: Uncategorized | Tags: cancer, chemo, chemotherapy, lymphoma, nonhodgkins-lymphoma, r-epoch 1 Comment
Sunrise 9/26, Piedmont Park, Atlanta, Georgia
In the Spring of 2021, I had an umbilical hernia that needed repair. I got a referral to the surgeon, did my pre-appointment and didn’t make it past eight as I counted backwards from 10.
I woke up and the doctor was sitting beside me.
“Did everything go OK?” I asked.
“Yes, as far as the surgery goes. But while I was in there, I found a large neoplastic mass in your abdomen. Probably a lymphoma. You’re scheduled for a CT scan next week.”
And with that, we were off to the cancer races!
I got busy, as I do, and had the scans, a biopsy, bloodwork and fought my way to the front of the line with the oncologist I wanted. In 6 short weeks, we cleaned out the basement, Shane moved in, sold his house and I started chemo. Not just any chemo, but the R-EPOCH regimen, a fun little mixture of chemos, steroids and antibiotics. Treatment was six 96-hour drips, requiring me to be admitted for five days every third week.
All of that is intimidating and a pain in the ass. Scary even. Then, when you learn that Diffuse Larger B-Cell Lymphoma is always categorized as Stage IV, the enormity of the task confronting you becomes clear.
But I did it. I packed my bag every third Monday and scheduled around my time on the Winship Cancer tower’s ninth floor, reserved for special chemos and bone marrow transplants – not quite boy-in-the-bubble stuff, but close (there were two rooms for that kind of isolation).
I tolerated the drugs fairly well with only a passing moment of nausea after the fifth cycle. My hair fell out in clumps. I became fatigued. But otherwise, I was relatively unscathed. I maintained my weight. I ate what I wanted. I missed a bad wave of COVID. I made my stays into little breaks and enjoyed my mornings listening to new music and walking the “circuit.” I never threw up. No mouth sores, no diarrhea, nada.
Except for my vision. During the first two chemo cycles, I was given a spinal column injection of methatrexate, a small dose designed to prevent the cancer from crossing the blood/brain barrier. My optic nerves became inflamed and I have permanent visual degradation in about 50% of my right eye and 15% of the left. Toxic optic neuropathy for those following along.
I had another PET scan in March, 2022 and it came back relatively clear, enough so that the oncologist told me “we’ll declare you cancer free when you come for your 6-month repeat scan.”
I Feel Good in the Skin that I’m In
Posted: 2025/07/28 Filed under: Uncategorized Leave a comment
My friend said to me at lunch today, “How long have we known each other? We met in what, 1988? I mean, think of all the iterations we’ve been through.” I left with that thought turning over in my head. Friendships like this one are like being in the same skin. You spend more than half your lives together, living and going through everything that entails. And I mean everything. And still, you meet up for lunch 37 years after you first met, it’s all changed and yet nothing has changed. It’s completely comfortable, safe and known.
It’s been a shitty few weeks for both of us, but we’ve been there for each other. Like always really.
Rusted, Rotted, Falling Apart
Posted: 2025/07/15 Filed under: Uncategorized Leave a comment
Rear of House with Flowers, near Morgan Springs, Alabama, 1984, William Christenberry.
I think I was about 50 when things started to go South. Fresh off two really amazing summers in Provincetown, I was desperately underemployed and couldn’t seem to find a job. At least not one in corporate America, like I had. My parents were beginning to exhibit signs of decline; I watched my Mother go through DTs after surgery to replace a hip. I was single and not happy about it. I abused alcohol and drugs and was not happy about that, either. The partying had lost its fun and had an edge. Mondays were hard.
I was lost and it was my fault, for whatever reason.
Like I said last post, a lot has happened. I found my groove professionally. The work came and I enjoyed it and it led to bigger and better things. After a BIG bender one weekend, I started dating my husband. I rode my ass off on the bike and got into primo shape. I helped my folks navigate their way into an easier living situation. On many levels, I was happy and healthy.
But it wasn’t the same as the golden years, more than a decade when it was just me – only one person to care for and limitless possibility. Mom and Dad were self-sufficient and seemingly enjoying their retirement. Money was assuured and health taken for granted. There was endless fun and new friends and adventures. Yep, not much responsibility. It was indeed fine. My friends were in the same boat and boy, did we celebrate.
I’m not a pessimist nor am I a negative person. But I’m 60 and life has changed. I realized today, as the world of those I love was crashing down around us, that this is another transitional stage. If there’s any solace or hope, I guess it’s the promise of the unknown and what comes next. It’s so fucking interesting. And normal. And natural, this thing called life.
Bring it, let’s do it.
…And, we’re back
Posted: 2025/06/10 Filed under: Uncategorized Leave a comment
Magnolia, Fifth Street, May 2025
I’ve been toying with the idea of writing more for myself. Believe it or not, I’m tired of writing about Donald-fucking-J. Trump. Everything I’ve written here is true and there really isn’t much more to add except the loss of our Democracy. Yeah, that.
I’m good though. The last four years have been quite interesting. Definitely not the fun, careless, crazy AKAFrankGreen years, but good nonetheless.
Oh, and I’m cancer-free. And married. And 60. How did this happen?
Turn, Turn, Turn
Posted: 2023/06/23 Filed under: Uncategorized 1 CommentWell, I was right.
Two indictments, one extremely serious and seemingly unbeatable.
And the moron continues to show no remorse, no sense of purpose other than to serve (and enrich) himself. Me, me, me, me!
Have fun in prison, motherfucker.
It’s Tragedy
Posted: 2021/01/20 Filed under: Uncategorized Leave a comment
Inauguration Day is perhaps the most special in American civic life. This day is the culmination of the original intent of our democracy, an expression of the will of the people in choosing their representative government. It is historic each and every time it happens. It is a day in which the victor and the defeated put aside results in the interest of the future, of the common good.
Loser acknowledges winner.
And importantly, winner acknowledges loser.
Today, Donald Trump willfully chose to remove himself from the dais. He chose not be part of history, not to be part of the legacy of America. Not surprising, his choice was altogether selfish: He abdicated involvement in the interest of himself.
And so it is with Trump. His selfishness knows no bounds. His concern for himself is without equal. We’ve known this for as long as we’ve known Trump. We allowed it because it was citizen Trump, not candidate or President Trump.
Five years ago, the selfishness of Donald Trump did not abate, it only grew as he took office. His disregard for the law, his willful disdain for courtesy, process and protocol, his casual trashing of science, his cruel use of the scapegoat, and indeed, his malicious manipulation of truth all find their source in his unquenchable thirst for himself.
Like contagion, his selfishness spread without limit: Politics. Diplomacy. Art. Sport. Education. Science. Religion. Hyper local matters such as zoning, voting, clean water and air. Even the personal choices of the colors of the clothing we wear were tainted with his stain. Left vs right. Rural vs urban. Me vs you. Us vs them. Red vs blue.
A year ago selfishness blossomed into full tragedy when he so nonchalantly brushed-off the threat of an unknown respiratory virus spreading like wildfire in another highly industrialized, densely populated, economically essential, extremely mobile population. Tragedy most plainly manifested itself in the the agonizing, unnecessary, lonely deaths of thousands of his fellow Americans. And once again, selfishly, he singularly avoided their fate because of his privilege.
He failed to sooth or even recognize the wounds of 400 years of shackles and whips. Not once did he pause to honor the newly dead. He aligned with enemies and dealt in lies. He created chaos as a sort of shield, thinking it would obfuscate the truth. He marched across a tear-gassed street to a house of God brandishing an upside-down Bible in the name of peace. All for himself. All for Donald. All for show. Never for us.
Selfishness begets some things. Tragedy, others: Truth subverted. 400,000 dead. Legions of followers, blindly voting against their own interests. Millions convinced of a false theft. Thousands marching to disrupt what they hold most precious. Hundreds arrested. Lives disrupted. Careers ruined. Five killed. All because of his narcissistic, ongoing rally cry.
All for him.
All because he could not, and cannot, place others before himself. Us. His country.
History will not be kind to him. His followers — lied to, conned, taken advantage of — will be lost, wounded, imprisoned and violent. He committed all of this knowingly. Scores of Americans dead, not at the hand of an enemy, but by this President’s willful neglect and unconscionable ego!
And this, this is the tragedy of Donald Trump.
May he rot in Hell. And may God Bless America.
JohnBrownJohnBrown! 