Plan B is in Play

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:

Mom and baby showed up on our street, much to our a-moose-ment.

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.

Best. Swim locale. Ever.

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:

At least we got back in before they ran out of burritos.

Emmitt Smith and Lucy LOVE that I’m spending less time on the bike, etc, and more time on the couch with them:

Bad cat selfie. But proof that they tolerate each other.

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.