Riding the wave...

I was so lucky to have the opportunity to surf with First Descents a few years ago. I met wonderful people, and picked up one of the metaphors that works for me in dealing with MBC. The ocean doesn't care about you, and it is wild, wonderful, beautiful, calm, raging all in turns. And yet we still go out and ride the waves. In surfing because we could, in MBC because we have no choice. I've been riding a nice wave this past late fall and winter after a rough late summer/early fall. Gem+carbo has worked well - especially after reducing the dose. And side effects were ok, lots of fatigue and low blood counts, but not much nausea or other. Mostly though my breathing improved and my pain abated, which is a pretty good indicator of how well treatment is working for me, and I had two stable scans. All in all life improved. 

During this time I also worked to step back some from advocacy as I try to focus more limited energy on family, friends, nature etc. This has been hard, especially leaving the board of METAvivor, but I know that the organization is headed in the right direction with an amazing slate of new board members. I've also worked to move the Project Life education series "Spinning Science" to an asynchronous format to take pressure off me for lecturing (lots of energy there) and to allow people to complete more at their own pace. We're in the middle of it right now, and I think it's going well! Office hours/Q&A sessions are more fun than lecturing, and I feel like I get to know participants better. We'll see, but I hope to run it again in this less energy intensive way. We're going full bore over at PCDI though, and I'm enjoying the work there as I can. I'm so grateful to be part of great teams that work well together and support each other. 

But now the ocean gets rougher and staying on the board gets harder. I've been having increasing shortness of breath and some pain as well as general fatigue and lack of appetite. In the past this has preceded progression on scans as is the case this time as well. My CT scan showed a significant increase in size of my largest met and bone scan was a mixed bag with a skull met worse, a new met on my femur and lots of stable mets as well as some in the spine mildly improved. 

So! After talking with docs at OSU and locally and lots of discussion and thinking, I start Enhertu Monday, tomorrow err today! I'm a little nervous, as Dr. Stover at OSU said, "high risk, high reward" because this drug can lead to lung inflammation (ILD/pneumonitis). We will monitor closely, and I am starting on 80% of the dose. I'm also hoping this helps with other side effects, such as nausea and fatigue but TBD. Side effect roulette is real! Luckily I have experience (and drugs) for lots of these SEs and a very responsive oncology team, including my lovely nurse navigator. We will take it as it comes and adjust as needed. 

That's the cancer side :-) Otherwise life is lifing in that way it has. Will and I took the camper out to Red River Gorge a couple weekends ago and had a wonderful time. Oxygen helped with some short hikes and they have a ski lift to get to the top of Natural Bridge in the state park. Believe it or not, my first ride on one of those. It was fun and the view was fantastic. Otherwise we relaxed in camp, took naps, and had a nice fire we even roasted some hot dogs on one night. It was fantastic.