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.