A bit more time has passed than I meant since my last post. I’m now three weeks into the first month of my clinical trial, and so far there isn’t much to say about how it’s going because I don’t have any real data points since the treatments began.

I did get a baseline blood test—the same one that first told me my cancer wasn’t gone. That number has quadrupled, but it still represents an extremely low amount of cancer DNA in my bloodstream. What it does tell us is that those first few tests weren’t flukes. There is cancer somewhere, and it’s growing.

It wasn’t a good day when those results came in, but it also wasn’t unexpected. My medical team will check again in a few weeks to see if the trial is working. We’ll see what happens.

For now, life goes on as best it can.

Which has been a frustrating thing for me lately.

This is going to sound a little like a pity party, and maybe for today it is. The reason is simple: life seems to be going on without me.

What I mean is, the longer this cancer shit continues, the longer I feel like I’m being held hostage by it—to the point where I can’t live life the way I normally would or the way I imagined I would in the future.

Maybe the worst thing about cancer is that it traps you in a way you don’t fully realize until it’s already stolen a big chunk of your life.

For over a year now, life has been on hold for all sorts of shit reasons. The ostomy bags made travel too difficult to even attempt because everything was so new and uncertain. Radiation required me to stay tethered to a hospital as if I were Tugboat out for a walk with whoever happened to be holding the leash that day. Surgery and recovery slowed me down for almost three months. Now this clinical trial requires so many blood draws and conference calls that I think they might just be seeing how much blood they can take before I finally run out.

All of that makes planning anything that isn’t medical—or at least very short term—nearly impossible. That’s been the hardest part of cancer, at least for me, and by extension for anyone I would have otherwise been out living life with.

I didn’t realize that going into this, and I don’t think it’s talked about very much. Everyone talks about beating cancer. Not many people talk about what it feels like while you’re waiting to find out if you’re beating it. That’s the really shitty part of all this. The longer it goes on, the more frustrating it becomes as you watch life pass you by from a hospital waiting room, an infusion center, or the window of your car while driving the 184 miles back and forth between home and the hospital.

But like with everything, I try to find the silver lining.

While this particular frustration has been harder to work through than most, there’s always hope. Hope that soon I’ll finally get to check off some of those bucket list items I wrote about when I started this blog. Hope that when all of this is behind me, I’ll have new, unexpected hopes that could only exist because I went through something like this.

That’s actually kind of a cool thing to think about when I stop long enough to do it.

Thankfully, I have about 20 more hospital visits and roughly 4,000 more miles of driving ahead of me to think about exactly that. So I guess even though the frustration keeps growing, maybe my hope in the unknown is growing right alongside it.

How was that for wrapping things up on an upbeat note?

Tugboat is sitting on the floor next to me, completely unconcerned with any of this. His only question is whether I’m going to take him for a walk before bed.

So maybe being tethered to something isn’t always a bad thing. Tugboat seems pretty okay with it… most of the time.

Maybe I just need to be more like that fat little corgi.

I’m finishing out the first week of this clinical trial, and for the most part I’ve been asymptomatic. They told me I might have high blood pressure, but since I have no idea what high blood pressure is supposed to feel like, I can’t tell if this low-grade headache is my sinuses or a side effect. Honestly, I haven’t even wanted to ask because I don’t think I really want to know. I’d rather assume it’s my sinuses and that it’ll go away. That feels like a better mindset anyway.

I think I need that mindset, too.

Ever since it became apparent that I still have cancer in me somewhere, my mind has started wandering into places I don’t consciously want it to go whenever I’m not focused on something important. My little sister would probably try to diagnose me with something beyond cancer, but I don’t think that’s what’s happening.

What I mean is this: if anything feels even slightly out of the ordinary, my brain immediately jumps to, “Is that the cancer?”

For the last couple of days, my left trap and upper back have been sore. When I wake up in the middle of the night because of a sharp pain there, my first thought—before I’m even fully awake—is that it must be cancer.

Tugboat is not at all happy when this happens.

I tend to jolt awake, and since he sleeps on the left side of the bed near my feet, he gets jolted awake too. I assume if he could talk, the glare I can feel him giving me in the dark would be accompanied by something like:

“Hey, dumbass. It’s not cancer. Two days ago you spent an hour pushing and pulling a sled behind the gym in the middle of a Texas summer without drinking enough water. You strained a muscle. Stop waking me up and go back to sleep.”

Since he can’t actually talk, he settles for huffing dramatically or occasionally snapping at the back of my feet under the covers before going back to sleep.

He’s probably right.

It’s highly unlikely this cancer is growing anywhere quickly, if at all. The whole point of this trial is to kill it, so assuming it’s already causing physical pain isn’t exactly the logical conclusion.

Unfortunately, logic doesn’t always get a vote.

My subconscious likes to throw these thoughts at me before I even have a chance to react, and that’s frustrating as hell.

I don’t have a great solution yet, but I’ve been experimenting.

I tried reading before bed, but that doesn’t work because the book I’m currently obsessed with is also incredibly depressing. I should probably switch to something lighter, but it’s just too good to put down.

I used to watch random YouTube videos, but last week the algorithm decided to be an asshole.

It served up one of my favorite videos ever, made by some friends of mine more than a decade ago, called A Tribute to Denali. I highly recommend it, even though I’d completely forgotten what it was actually about.

It’s a love letter to a guy’s dog.

What I forgot was that the guy in the story—Ben—also had colon cancer.

It’s funny what you do and don’t remember about something until you can relate to it yourself. Everyone remembers the dog because everyone can relate to loving a dog. I honestly didn’t even remember the cancer part beyond a funny line about rabies.

The video ends with one of my favorite lines ever, and rather than spoil it, I’ll just tell you to go search for it.

It’s beautiful.

It’s also not exactly what I need before bed these days.

So what were my other options?

I briefly considered heroin, but I don’t know where to buy it, I don’t know how to inject it, and if I’m being honest, I have enough PTSD from people sticking needles directly into my veins that I’m going to pass on that hobby.

I already quit drinking bourbon, so all those bottles collecting dust aren’t much help either.

That leaves me with one remaining option besides the various woo-woo suggestions from well-meaning friends who don’t believe in science, medicine, or basically anything resembling common sense.

Video games.

I’d forgotten how perfect video games are before bed.

They’re an escape from reality in a way that takes me back to one of the happiest periods of my life. Today’s games are incredible, but they’re also so much more advanced than the memories that permanently occupy the happiest corner of my brain.

When my brothers and I were little—I think I was seven—my dad had just died, my family was dirt poor, although I didn’t really understand that at the time, and the original Nintendo had just come out.

I didn’t even know what a Nintendo was.

Somehow my mom managed to get one for us for Christmas.

To this day, that still blows my mind.

You see, we were poor. Really poor. Getting a Nintendo back then would’ve been like someone handing you ownership of an NFL franchise for Christmas. It was that ridiculously impossible.

And yet somehow, Mom pulled it off.

For the next year, I don’t think my brothers and I left the room where it lived except for school, food, and the once-a-week mandatory shower our mom insisted three gross little boys take whether we wanted to or not.

We played Super Mario Bros., Top Gun, Section Z, Mike Tyson’s Punch-Out!!, and the original Legend of Zelda until our thumbs probably didn’t have fingerprints left on them.

When I sit down and really think about it, I can’t come up with many happier memories.

So these days, before bed, when my brain wants to wander into places I’d rather it didn’t, I pick up a controller instead.

And it works.

I go to sleep smiling.

I think Tugboat would agree that’s a whole lot better than the alternatives.

So, as I wrap this up, my shoulder still hurts, my clinical trial is going well, and a video game is somehow helping me smile before bed.

Life isn’t too bad…

Even if it’s wildly uncertain right now.

Turns out getting repeatedly killed by a video game is a surprisingly healthy distraction from worrying about everything else.

A Tribute to Denali – https://vimeo.com/122375452 

Today the clock started.

At noon, my clinical trial officially began.

I meant to let everyone know sooner that I had finally gotten the insurance mess sorted out and completed the last test I needed last week, but I just ran out of time. That may end up being a theme for me over the next six months.

The clock is running now.

I have 180 days in this trial. Which means, at the very least, I have 180 days to be overly confident that I’m going to be cancer-free when they’re over. If not, it’ll probably be time to start facing a different set of realities. The kind that involve conversations about quality of life versus quantity.

I know nobody really enjoys reading that. Trust me, I don’t exactly enjoy writing it.

But I’ve become a pretty practical person over the last couple of years. I’d love to tell you it’s because I’ve matured, but that would be a lie. I probably never will, no matter how long I live.

I think it’s just because I’ve always worried more about other people than I do about myself.

Before I go any further, though, I want to make something very clear. I believe this trial is going to work.

Nothing about today changed that. I’m not writing this because I’ve suddenly lost hope. I’m writing it because starting the trial doesn’t make death any less possible. It just gives me a timeline that makes pretending it’s impossible feel a little dishonest.

So I think about it. Probably a healthy amount.

Not because I’m expecting it, but because if things ever do go the wrong way, I want to leave as little for the people I love to carry as possible.

After my dad died, for years I assumed he was the one who suffered the most. Cancer absolutely ravaged him. Thankfully, I was too young to really understand most of what was happening or remember much of the worst of it.

What I do remember is everyone else.

I don’t think that anymore.

That’s the cruel thing about death. The person who dies isn’t really the one who suffers. It’s the people left behind who have to carry everything that comes after.

So lately I’ve found myself doing things I never imagined I’d be doing in my forties. Getting a will together. Making a list of all the important stuff. Making sure people know where everything is.

Trying to figure out how to get away with tax fraud so that if things do go south, whatever is left ends up with my family instead of Uncle Sam.

Plus, I kind of like the idea of committing tax fraud as I’m walking out the door that is life.

I’m probably romanticizing fraud a little too much there, but whatever.

With those things finally starting to get checked off the list, today felt different.

Today wasn’t another scan. It wasn’t another surgery. It wasn’t another delay because insurance decided to remind me why everyone hates insurance companies.

Today was Day One.

I was back on the ninth floor of the Mays Building at MD Anderson, sitting in the infusion center on one of those hospital beds that apparently gives me a little PTSD from the months I spent there during chemo.

Thankfully, this visit was easy. One IV. About an hour. A nap. Then they sent me home, and I drove myself back to Austin.

For the next six months, I’ll take one pill every day for 21 days, take a week off, and then do it all over again.

Honestly, I don’t think this part is going to be that hard.

I also don’t have some overwhelming desire to suddenly start living differently.

I’m not going skydiving or Rocky Mountain climbing or doing anything else from that annoying Tim McGraw song about how you’re supposed to start living once you find out you’re dying. That just seems dumb.

Tomorrow I’ll go to work. Then I’ll go to the gym. Then I’ll probably eat some fat kid food.

Life is still life.

And if you’ve read this far, I hope that’s the biggest thing you take away from all of this.

I believe this trial is going to work.

I’ll spend the next 180 days assuming it will.

Tomorrow I’ll wake up, take my pill, and move on to Day Two.

It’s Tuesday evening. I had expected to start my clinical trial yesterday and have something of interest to write about today, maybe even something like the trial immediately giving me a superpower.

That is not what happened.

I didn’t start the trial. No superpowers. Not even the mildly inconvenient kind.

Last week I started driving to Houston at 5 a.m. for two different tests that were prerequisites for the clinical trial. Thank God for self driving, because by 7 a.m. I was already in that familiar state where you are technically awake but also absolutely not functioning at full human capacity. Waze was already telling me I was going to be 15 minutes late for my first appointment. I hate being late, so I called ahead and they told me it didn’t matter. An EKG takes five minutes. They can see me whenever I get there.

Which, in hindsight, is about as clear a warning sign as you can get without someone explicitly telling you today is going to be a bad day.

I’m not usually one to believe in foreshadowing, but that was pretty hard to ignore.

I got to the hospital at 8:15 and was done with test number one by 8:30. The first test was in the main building of MD Anderson and the second was in the Mays building. There is a long sky bridge between them and a coffee shop along the way in the Rotary House.

I stopped for coffee.

Hospital coffee has a very specific personality. I don’t think it is intentionally bad. In a hospital everything is either trying to save your life or trying to kill you. Coffee is doing neither, which honestly might be worse.

At the time I was too tired to fully appreciate the symbolism.

By the time I got to my second appointment I found out that insurance had not approved the test yet. My medical team was, as always, great. They were working on it, communicating, and doing everything they could.

I don’t blame them.

I do, however, blame the insurance company for things I probably should not write on the internet without cooling off first.

What followed was seven hours in a waiting room with no food, no coffee, no book, no Steam Deck, and no real answers about whether the test would happen at all. Just sitting there watching the day slowly turn into something I was no longer in control of.

Eventually I had to head home because Tugboat was home alone. I had originally expected to be gone for about six hours. I was on hour ten.

The drive home was mostly self driving again, which was probably for the best. I did make one stop for real coffee and three tacos from a place that looked extremely sketchy and somehow delivered exactly what I needed. So, silver linings.

The test I didn’t get was a cardiac imaging study using nuclear medicine. It is one of the last prerequisites for the clinical trial. Insurance denied it outright regardless of what MD Anderson said. Their reasoning was that an echocardiogram was sufficient given my age and fitness.

The subtext felt pretty clear. This is cheaper, so this is what we are doing.

The problem is that MD Anderson did not have any echocardiogram appointments available before the clinical trial cutoff date. So everything got stuck in that very specific kind of medical bureaucracy limbo where everyone agrees there is a solution but no system can actually produce it in time.

Naturally, I took this well.

There was a brief moment where I started mentally assembling the required ingredients for Molotov cocktails. That bourbon collection that had been quietly going unused for the last year, combined with all the medical supplies the hospital had given me over the last year that I had also not used, suddenly felt like they had a very specific and extremely unhelpful purpose.

I did not act on any of it.

Eventually my medical team was able to get me scheduled at The Woodlands for the test, which means I should still be able to start the clinical trial on Monday.

I am currently putting the metaphorical Molotov cocktail ingredients back where they belong. For now.

I have always disliked insurance. Not the people working in it, but the system itself. I am sure I do not see all of its complexities, but from where I sit it often feels like a system where cost becomes the only variable that really matters, even when it collides directly with time, access, and sometimes urgency.

And I will be honest, that part tends to pull on older memories. Things I don’t usually sit with for long, but that show up anyway when you are alone in a hospital waiting room for hours with nothing to do but think.

At some point the anger shows up. Then it just sits there. Until someone close to me reminds me that I am not really in a position to judge an entire system or every person in it based on the worst version of what that system produces. That is a hard thing to argue with, even when you are still annoyed.

There is a quote from Ted Lasso that kept coming back to me. Ted says something to Coach Beard along the lines of hoping that either all of us, or none of us, are judged by the actions of our weakest moments, but by the strength we show when, and if, we are ever given a second chance.

I don’t know that I have anything fully resolved here. I just know that idea sticks. That people are more than the worst function of the systems they are part of. And that anger, while very real, does not have to be the final version of the story.

Tonight Tugboat is snoring at the end of the bed like none of this happened. Monday starts one hell of a new chapter.

See you then.