I’m in. I didn’t get the port installed for nothing after all. On August 14 (I know, I’ve been slack), I started the PD-1 trial at Georgetown, with Dr Giaccone. I am lucky number 18 in the trial. That, of course, means that I made my Neutrophil number (1900!). Neutrophils shouldn’t be as big a factor in this trial, as the PD-1 doesn’t make the WBCs run away and hide.
It was and is a huge relief to just slide into this trial from my NIH/NCI trial. I’m not sure what I expected when I started it (maybe a band?), but it was, truthfully, a little anticlimactic. We were way early, parked as far away as humanly possible, and had to wait for hours while the lab ran tests and mixed drugs. The 30-minute infusion of the immunotherapy drug that I hope will turn the tumor tide was uneventful and easy, thanks to my brand new port.
And then I waited some more. The list of potential side effects from PD-1 is impressive, from fatigue to joint pain to MORE shortness of breath… It’s three pages of fun possibilities. But so far, I feel ok. My body seems to be tolerating this better than it did the Sutent. Of course, we still don’t know if the PD-1 is working and stopping the cancer cells at the checkpoint. That’ll come in a few weeks with my first CT scan. As always, I won’t waste energy worrying about what’s happening in my immune system, as I can’t effect change. (Want to waste 15 minutes on the internet? Google “affect vs effect change.”)
Instead, I’m turning my energy, minus a bit of fatigue and shortness of breath, to loving every second of fall here in Park City. There was this last week:
And this, this week… we’ve been swimming in the Jordanelle Reservoir A LOT, in anticipation of me maybe, perhaps, possibly doing part of the Lake Tahoe Half-iron in a month. It could happen.
I also hopped in on the National Ability Center’s Summit Challenge, choosing the 52 mile ride around Park City. You’d think that with all the riding I’ve done this summer, a 52-mile day would be an easy day. You’d be as wrong as I was. I couldn’t keep up with my pack of friends from the first few miles. It seems like ever since my radiation almost two years ago, I can’t build up strength. I still have no top end. Or even a close-to-the-top end. I can’t get traction. I am coming to terms with the probability that this is how it is now for me. Oh, you can throw out reasons/rationalizations/explanations as to why, and I know there are a few (radiation, lung scarring, drugs, rogue cancer cells), and I will grant you that they are valid. BUT, the bottom line is, I used to be able to swim faster, ride faster, and run faster, and I can’t any more. That’s getting more ok for me as time passes and my priorities change. I am coming to terms with the possibility that my Ironman days are truly over. As are my days on or remotely near the podium. Thankfully, I had more than a decade of successful racing. And I am still out there. I finished the 52 miles (finally. Thanks, Marty!). And I was rewarded with a couple of my favorite photos ever. Here’s one:
Emmitt Smith and Lucy LOVE that I’m spending less time on the bike, etc, and more time on the couch with them:
Finally, in case you don’t know, my friend, Scott McKenzie, died on August 11, trying to get into one last clinical trial for his cancer. In his too-short life, he made people’s days better with his radio show; made people laugh because they all felt like they were in on his inside joke; made his community better. In his too-early death, he is making me (and all of us, I hope) appreciate every single day even more, if that’s possible. Because I teetered on the edge of being dismissed from my Plan A clinical trial often for the same reason he had trouble staying in his. Because when I finally was fired from my trial, I had what I hope to be an even better alternative with PD-1 trial waiting for me. Because always, in the back of my mind, I know, that could be me.
But that is for another, far-off day. Right now, I’m going boxing. I am trying to perfect my left uppercut. That’s my One Goal for today.