Happy, but confused

I’m writing this on New Year’s Eve, a week since my last treatment.  I’m totally confused.  Shouldn’t I be happier?  Shouldn’t something be improved?  I have to tell you, I’m very easily frustrated. I had trouble taking pills a few nights ago, and it was really bad.  My frustration just came to the surface and of course, that made it even harder to take the pills.  I think I’ll just need to feel some kind of improvement to tone the frustration down.  Once a glimmer of positive change happens, I think the improvements will follow fast and furious.

But let me back up. The first day after treatment ended was Christmas Day.  Lee and Heidy came over for Christmas, and it was great to spend the day with them.  We opened presents, hung out, zoomed with Eric and Irene.  Lee cooked gumbo, so the house smelled good even though I couldn’t eat much.  It was really a wonderful day.  I am lucky to have such a wonderful and supportive family.  I hope your Christmas was a good one, too.

Now Suzy and I are focusing on just getting better: slowing beginning to walk, taking my meds, keeping my weight up, and trying to eat real food.  The first day I walked, it was only about 10 minutes, building up to about an hour the last couple of days.  As far as meds, with my swallowing issues, I’m now on children’s liquid Advil and powdered Tylenol.  Let me tell you, they taste bad.  Suzy ordered some adult liquids, but I don’t hold out much hope they’ll taste better.  It’s been a long, long time since we had to coerce Lee and Eric to take their liquid medicines, and I finally understand.  It’s hard to believe that companies that make these things have landed on such terrible tasting products.  Sorry, Eric and Lee.

What does keeping my weight up mean?  First, although I am no longer having treatments, the radiation is still active.  It’s cumulative, so it’s even more active during the first week or two after treatment.  It takes a lot of calories and protein to heal – 2500 calories and 120 grams of protein daily.  With Suzy’s smoothies, I’m able to get them both.  But I’m temporarily ignoring every other aspect of a good diet. I often get twice as much carbs and salt as I should.  The orange creamsicle smoothie recipe we have is nothing but sugar.  But in the short term these don’t matter.  For lots of patients, losing 10 to 15 pounds a week is not unusual.  I’ve avoided a feeding tube, putting me in a select group.  Thanks, Suzy, for pushing me!

Eating real food is another question.  Besides smoothies, eating anything is a big challenge.  And honestly, even smoothies are a challenge sometimes.  I love baking, so I baked some bread the other day. Warm buttered bread sounded so good.  The recipe was called Pillowy White Bread – surely I could eat that.  Well, I couldn’t, leaving me totally in tears of frustration.  But I need to begin eating again, relearning swallowing and the simple act of moving food around in my mouth.  Yesterday, it took 30 minutes to eat a piece of toast – no tears, just lots of sighing, rubbing my forehead, and more sighs. Maybe today will be better. (Update:  On New Year’s Day, I ate 2 eggs and 2 strips of bacon.  It probably helped that Lee cooked the eggs in bacon grease.  Woohoo!)

The skin on my neck is so burnt and tight, it’s painful to even turn my head.  Radiation did a lot of damage as it was doing good. As many of you know, I love numbers.  Give me some numbers, and I have to do something with them.  During my treatments, I received 70 grays (a measurement of radiation) of radiation.  A standard xray produces about .0007 grays of radiation.  Doing the math, as I must, in 33 sessions I received the equivalent of 100,000 xrays.  I am not sure how I will react when I go to the dentist and they put that lead xray blanket on me.  I love and hate Google.  I read an article that said they measured the grays a person received from the atomic bomb — it was 9.46 grays!  Oh, f***!

Back to where I started.  My emotions are all over the place.  I’m glad to be in recovery, but totally petrified about the outcomes.  Did they get all the cancer?  Even though I suffered, I know I haven’t suffered as much as many others.  Did I suffer enough?  Am I just fortunate?  What if they didn’t get it all?  And if they did, did it cause other issues down the road?  In any case, I have a PET scan scheduled for March 29th, followed by a consult on March 30th.  That is a long, long, long time from now.

Now I’ve written down my fears.  Writing usually makes me feel better, but not so much this time.  But there it is.

Ending on a positive note — For New Year’s Eve, Lee, Heidy, Suzy and I followed Colombian traditions for health, happiness, and prosperity.  Not sure which tradition was for which, but after the year that was 2020, I was ready to try anything.  We wore yellow underwear inside out.  We had 12 pieces of wheat on the kitchen table, and a bag of lentils and money in each pocket.  At midnight, Suzy and I kissed and both took our first step with our right foot.  Everyone but me ate 12 grapes.  We walked around the block dragging our roller bags so we can travel in 2021.  Then we went into the back yard and burned something that represented the bad side of 2020.  Trump was the easy target here, so we burned a life size printed version of Trump, adorned with photos of bad things from 2020 like wildfires and hurricanes and some medical claims (we had lots of bad things to choose from!).  After this past year, we can only hope that all of our new traditions weren’t in vain.  There’s not much downside risk!  

We’re hoping for a great 2021… for us and everyone we know.