Second Period Adjustments
April 18, 2025
Back in January, when my biopsy samples were sent to NIH, we had to wait a few weeks after the PET scan to get the results. The pathologists at our hospital and the experts at NIST referred to my biopsy samples as a "difficult" case. NIST came back confirming Hodgkin’s Lymphoma. This diagnosis was clear enough to move forward.
The space between that first PET scan, the NIST analysis, and the start of treatment was longer than we would’ve liked. With a fast-growing cancer like this, that delay may have skewed our original data. We could have been behind before we even got started. So now, we’re stepping back, recalibrating. Call it a re-triangulation of the facts. We need to understand where we truly are now, not where we thought we were back then.
Today, the picture is more nuanced. The chemo has done its job in many areas. The cancer no longer shows in spots like my L1 vertebrae. The tumor in my abdominal area has shrunk. That’s progress, but (and there’s always a “but,” isn’t there?) the remaining mass is still lighting up on the PET scan more than we’d like. It’s not a red flag, but it’s not something we’re going to overlook either.
Maria, my care team, and I are all on the same page: this cancer isn’t playing by the usual rules. It’s “difficult,” just like they said. Honestly, I expected as much. I’m the adult who once got Cat Scratch Fever, a condition usually reserved for kids and kittens. Throw in my history of rare and ridiculous medical curveballs, and of course my cancer was going to be a riddle.
Rather than hitting pause, we’re choosing a more strategic approach. I'm currently writing to you from my chemotherapy chair, hooked up and receiving my cocktails. I will stay on my current chemo plan/schedule through the next cycle. I will receive Nivestym shots, throughout the next few days, to boost my hemoglobin and white blood cell counts, are still too low for comfort, so the shots stay in play.
Next week, we’ll attempt another biopsy of the abdominal mass. If you’ve been following along since January, you might remember we tried this before, but the steroids caused the tissues to degrade too quickly. That’s when we pivoted and got a larger sample from my neck, which NIST analyzed. This time, we’re going back in, hoping multiple core samples will give us better clarity.
In the meantime, treatment continues. Another PET scan is on the horizon. With this round of imaging and testing, we’re hoping for a clearer picture, something that reflects where I am now, not where I was three months ago.
This would be the part where I say, “yeah, this sucks.” And sure, some parts do. But this is my life. I’m hoping for a cure, and my team is too. That means we’re going to question every shadow and scrutinize every stubborn cell. If something’s off, we’ll adapt. This is a long game.
Here is my hockey reference, we’ve just finished the first period. Some weird shots came our way in the closing minutes, but now we’re coming out of the locker room with a fresh plan for the second period. Time to tweak the defense, recalibrate the offense. When we reach the third period, we are going to shut it down. (Go Sports!)
Shared Stories, Shared Strength
Last week, I read Living with Lymphoma by my friend Tim Krause, and I was stunned, truly stunned, by how closely his mindset mirrored my own. The emotions, the spirals, the quiet recalibrations after hard news, the stubborn flickers of resolve... it was all there. As if someone had gently gathered the thoughts I hadn’t yet voiced and laid them down on the page.
Tim and I first connected during the pandemic, after I backed one of his Dungeons & Dragons campaigns on Kickstarter. Not long after, he invited me to join a game with players from around the world. That’s where I witnessed his gift firsthand. Tim isn’t just a writer, he’s a master storyteller, one of the most imaginative Dungeon Masters I’ve ever had the privilege to roll dice with. He took each of us as we were and let us play to our strengths in the game. Managing a game with people you do not know is a hard challenge. But Tim did it with grace and a smile
Little did either of us know we’d cross paths again, not across fantasy realms or through game nights, but in something far more personal. After I was diagnosed, I learned Tim was fighting his own battles with non-Hodgkin's Lymphoma. He provided me words of encouragement that I took to heart.
His own journey reads like a D&D campaign packed with boss battles, surprise side quests, and hard-earned wisdom. Every treatment is a roll for survival. Every scan a perception check. And the setbacks? They’re the side quests, unexpected, exhausting, but often revealing more than the main plot.
Through it all, Tim continued to show up. Like a phoenix rising, he met each new day with grit, curiosity, and the same bardic charm that’s always given his stories heart.
If you or someone you care about is walking a hard road, whether it’s cancer or something else, I can’t recommend his book enough. Living with Lymphoma isn’t just a memoir. It’s a guidebook for how to hold on to your voice when everything else is shifting. You can find it and all of Tim’s amazing D&D modules and accessories at his page on Amazon or at Tomorrow River Publishing.
As for me, I’ll keep writing through the fog. My hope is simple: that maybe, just maybe, someone out there finds a part of themselves in these words. That they feel less alone. That our stories, Tim’s, mine, yours, can serve not just as mirrors of struggle, but as bridges. Paths forward, even in the darkest weather, for those who start this journey after us.
If that happens, if even one person finds clarity, comfort, or courage in these lines, then the writing has done its job.
It becomes a way through the storm.
For both the reader and the writer.
Remember, in the Cooper Family no one fights alone. We will fight this battle until we have won, as we have always done.
The hockey metaphor works. The hard part seems to be the number of over-times because cancer doesn't fight fair. In some ways the tests freaked me out far more than the treatments themselves, almost as though they were responsible for the bad news. I was always reminding myself, 'get the data' 'get the data' 'get the data'. I used to fight with my oncologist a lot early on, and resisted just about everything he recommended, until I got it through my thick skull, that resistance and delays were just making things harder on myself. You're on a solid path, still fraught with some tough decisions, and long days, but the fight, every minute of it, is worth it.