(expanding on last weeks update with go forward plan)
I thought we’d keep the baseball ⚾️ metaphor going….. and it’s not just because our hockey team has been on an epic losing streak!
I stand now, a step out of the box, knocking some loose soil off my cleats, trying to refocus.
Ladies and Gentlemen, we’re here in the bottom of the 9th….. two outs….no runners on. The Ump has called a tic-foul…… not strike three. Our batter still staring down the star closer. He’s thrown far more pitches than anyone expected. Over a year ago our young batter took this position, strong, healthy, full of stamina and truly hoping for a home run on the first pitch. To end this game with a walk-off. So much has happened in the last 14 months though.
My tic foul, as it stands, was the experimental immunotherapy. Seemingly, the third line of treatment is not having the impact we’d hope for (like the first two chemo regiments.) While we did just recently add a second drug to the combo I’ve been receiving, the growth seems too significant to continue down this path.
So that brings us to today. I’ve stepped away from the box to refocus (mind, body and soul.) I’m off all treatment currently. BUT– I have been given what we’ve been calling a wonder drug. Really, just Dex (a very common steroid— they don’t call them performance enhancers for nothing!) that has taken me from quite literally being bed bound for close to 2 months to reasonably functional. It’s hard to explain how I feel. I think if this were two years ago and I woke up feeling this way, I’d probably call into work and take a sick day. But, comparatively, I feel so well. It’s giving me energy (to the point of insomnia) and my muscles haven’t been able to keep up (legs burn like I ran a marathon after doing one flight of stairs) it’s lifted the unrelenting nausea and vomiting to a manageable level, and it’s taken-away some of the inflammation pain I was having. I had lost 15 pounds in just a few weeks despite best efforts to eat and keep fluids down, and it seems my regular impressive appetite is back. We know this truly is a short term solution, for symptom management only, but my god did I need the reprieve. I had spent weeks in bed thinking I would never get a chance to feel good ever again. But I do. And I’m trying to figure out how to best use this time for the short window it’s allowing!! If you know me, I’ve got some things in the works to take full advantage of this window!
Back in the summer when we knew the second line of chemo was unsuccessful and timelines were presented, a very real goal was just to get to Christmas, to be home and feeling well enough to enjoy time with my family this year after last years debacle. So, reflecting on that goal now, and in light of how the past few months have gone, it seems the path forward is taking a break from treatment through the holiday season. To feel as good as possible and have some quality of life. I will be starting a new experimental oral chemo in the New Year. Again, this is a long shot, and like most everything else the hope is palliative, not curative. But we’re hoping I tolerate the drug well, and am able to get some good days or weeks and possibly slow this beast down.
I will stand here at the plate. Gripping my Louisville Slugger, swinging at every pitch that I can make contact with, to buy time.
So here I stand. At home. With my family by my side, cheering me on, keeping me loved.
I’ll go down swinging.