Recalibrating my C

David is off at a very affordable Broadway show, having learned to navigate the theater ticket secrets known only to New Yorkers. I am serious. If you are in the know, keep your mouths shut. 😉 I am rested and recovered from my weekly shower and am going to see whether my energy lasts long enough for me to finish this post.

When I started using A-F grades for my days, I defined C as any average day. Neither particularly good, nor bad. Just average. But since October 9th, I have had a total of 3 C- days. Everything else was D+ or lower. Five of the last 7 days were D- days.

I defined F as needing to go to the hospital for nutrition and/or electrolytes. But I am not feeling that close to needing additional support. Rather, I have been calibrating my days according to the average way I was feeling when I started this tracking system, way back at the beginning of September. Obviously my system needs some recalibration.

My decline over the last 3 months have been pretty regular step downs. A trend that we are hoping that tube feeding will help resolve. But that won’t be a quick process either. I can’t just suddenly start pumping a bunch of formula into my small intestine. That way lies serious diarrhea. It will take time until we get my formula titrated up to a flow rate that I can tolerate. And nobody knows how long that will take.

My point is that regardless of how amazing the tube turns out to be (and there is still plenty of time to get your name ideas in), I am still looking at several more weeks where I can continue to feel increasingly crappier. Which leads me back to where I started. Clearly, I need to recalibrate my C so that I can better capture the space between feeling increasingly crappy and needing to go to the hospital.

I would also like to give myself more leeway this time so that the adjusted rating can last more than a few weeks. I haven’t decided exactly how I am going to achieve that yet. I have some ideas with varying degrees of complexity. After all, I wasn’t an evaluation professional for nothing.

One more thought before I go. I recently read an article by a palliative care doctor who was advising other doctors on how to deliver bad news. The piece that really stuck with me was her suggestion to replace “I’m sorry” with “I wish.” Instead of saying “I’m sorry that you are feeling so poorly” try “I wish that you were feeling better.” I tried this out with our friend DaveGordon this weekend and it actually works really well as a message of consolation. My affect was way more positive after the wish statement, even though they conveyed the same message.