“Phenomenally Well!”

(This is Suzy.)

Just a few days after hitting the wall — Bam! — things change. The roller coaster changes direction. Today Steve had an appointment with the radiation oncology physician assistant, and she said Steve was doing “phenomenally well”.  She also threw in a couple of awesomes.

The good news — You’ve heard some of this before, but here it is in a nutshell. The tumor is shrinking, so they’ve adjusted the high-dose radiation field.  He’s not losing much weight.  He can still eat soft foods.  He hasn’t lost his voice.  His mouth and throat aren’t very painful. Chemo doesn’t make him nauseous.  All those were common side effects that we hoped against, but planned for, just in case.  The doctors compliment him at every appointment for doing what they say.  (Evidently not everybody listens, but surely Mayo knows better than Google, right?)  Steve still feels pretty good — good enough to make me coffee in the mornings and unload the dishwasher.  He’s even tackling the undecipherable logic of our Medicare and Blue Cross co-pays right now.  And he’s definitely still feeling positive.  One more chemo and 7 more radiations to go! 

The less-than-good news — The skin on Steve’s neck is the color of an apple or a fire truck (no exaggeration), burning, blistering, then peeling, over and over and over.  It’s the main source of his pain and discomfort at this point. The only thing to really make it better is time — up to a month after radiation ends.  Lotions sort of help, but not really. So no silver lining on that one.  Food doesn’t taste like much and it’s hard to swallow, but we’ve got the high-calorie/high protein smoothie recipe down to a science.  Even pills are getting hard to swallow, but some come in liquid form, and he can grind up the others and mix them in applesauce.  His beard fell out in patches, but the silver lining is that now it’s easier to put lotion there.  It’ll probably grow back, but maybe not the same color.  He doesn’t have much energy, but there’s lots of stuff to watch on TV.  (Send suggestions — he’s actually on that really bad final season of Scrubs and will need something new soon.) 

More less-than-good news — I won’t get to go in to see Steve get celebrated out of chemo on December 22, or to see him ring the bell in radiation on Christmas Eve. They won’t bend the no-visitors policy. They tried moving the bell outside, but the hoopla attracted too much of a crowd. F-ing covid. But I’ll make sure he gets a nurse to record it for us all to see. Steve will have his arms up in the air like on the fun part of the roller coaster.