Team Fleury

Earlier, last week even, I thought about my treatment in terms of days – Monday, Tuesday.  Now it’s just weeks.  The fourth week is done, three more to go.  Last week was good.  Although I’m having lots of symptoms, the Mayo doctors have given me ways to mitigate them, some a lot, some just a little.

The treatment feels more personal now.  I’m using “I” more often when writing and in my mind.  Not sure why.  Suzy is still with me 10,000% (the mathematical part of me shudders at that number, but I’ll let it go this time).  While the treatments and the cancer are impacting both of us, and both of us are fighting it, the treatments are attacking me.  Suzy is crucial in helping me fight this thing and its side effects:  helping me eat right, making sure I drink enough, taking my meds, helping me with my exercises, comforting me.  It’s confusing that the treatments have to hurt me to help me.  I’m trying to stay in the present, lest I think of next week’s side effects.

(Suzy’s note:  I noticed last week that I’m not saying “we” anymore either.  I think it’s partly because I’m out in the parking lot, or even back at home, for every treatment and appointment.  F-ing covid.  Plus, right now, all the bad stuff is happening to “him”, not “us”.  My throat doesn’t hurt.  My skin isn’t burned and blistering.)

As drastic as my side effects are, it seems we’re doing much better than average.  Our radiation oncologist, Dr. P, was very complimentary of Team Fleury.  We are doing everything possible, everything they tell us, and that is successfully reducing or delaying each side effect. 

Realizing Team Fleury was the key to our success, I’ve already started again to think in terms of “we”, and I must say that it’s a lot less lonely when “we” have a radiation treatment, than when “I” have one.

The radiation has a cumulative effect, and so do its side effects.  Besides my ongoing eating issues, my neck is really burnt, so burnt that it really hurts to have clothes touch it.  Suzy bought me some wife beater t-shirts to keep everything away from my neck.  Well, as a 65-year-old man, I really don’t have the physique for them, even if Suzy is the only one who sees me wearing them. 

Next up was v-neck t-shirts, with a special enhancement – Suzy cut the necks 3 or 4 inches wider.  I told Suzy I thought my shirt looked like the one in Sparticus.  She said I looked nothing like Kirk Douglas.  Suzy thinks the shirts look like something from Flashdance.  In any case, she can’t accuse me of thinking I look like Jennifer Beals.  (And as I write this, I realize I need to update my movie references to the twenty-first century!)

Mayo runs a support group for head and neck cancer patients on Zoom.  (Again, f-ing covid.)  At our first session, we met a fellow patient, Loren, and his wife Patti.  Loren is about 3 and a half weeks ahead of me.   We ran into them a few times at the hospital, and they seem like people we would like to know.  Right now, we’re in this terrible little club that no one wants to belong to.  I reached out to Patti to see how Loren is doing, since he finished treatment on Tuesday.  Loren is still struggling and can’t eat, so he’s losing more weight.  It was a reminder to me that the radiation keeps working for a few weeks after treatment stops.  It’s funny to think that I actually have any advice for others, but sometimes I actually do.  Mostly all I can do is listen and provide words of support.  

So why am I telling you this? It reinforced that I need to keep eating and just push through the pain of each swallow.  Every appointment reiterates how important it is to do whatever we have to do to keep my weight on. Not only that, but they reiterate that I need to keep chewing and swallowing – I can’t live on nutrition drinks just yet.  I need to push through the pain and the psychological stuff, and eat as much “real food” as I can to keep my muscles working.  Easier said than done.  I ate an English muffin this morning, and it took 15 minutes of concentrated effort to finish.  Suzy wanted to talk about something, but I just couldn’t.  It took all my effort to simply eat. 

We’re still experimenting with foods to figure out things I can eat, and which ones I can still taste.  English muffins were good last week, but maybe not this week.  I have lidocaine gel to numb my mouth and throat, but ironically it’s one of the things I can still taste… and it tastes really bad.  

Next up: Team Fleury vs. Week 5.