Temporary setbacks or forever symptoms?

AnotherSurvivor said:

I'm two years post, and

I'm two years post, and finding my condition stabilized at six to nine months post, and now doesn''t change much.  I have thicker saliva and pretty much have xylimelts stashed in all rooms and cars.  I have numbness in the area that got radiation burned, but can minimize that by wearing scarfs and keeping it warm.    My jaw muscles on my radiation side need massage and stretching daily, and if I neglect that I pay when I try to bite in to something like a sandwich or apple.  Taste is mostly back, but some things don't quite taste the same.  I used to love hot Korean Kimche and now just find it painful.

My weight is stable, but I monitor it fanatically and ramp up diet and exercise if I gain a pound or more and it sticks around for more than a day.  I'm 45 pounds under start-of-treatment and intend to stay that way.   The biggest problem tho, is as I exercise more the extra pound comes in more frequently, and my level of exercise is up beyond pre-treatment, so my weight battle that had been waged for decades is still going.  My wife, who also battles weight but has not had the benefit of cancer-starvation-therapy, sort of hates me because she is much more diligent, and diet and exercise just keep things where they are.

Mental funkiness is a different story.  I'm just not interested in some of my old activities.  I have been having a pretty rambunctious retirement for the last ten years, eight of those pre-treatment.  I hesitate now because I'm just not as confident, and there are things like whitewater rafting where hesitation will get you in trouble.  I should be planning trips and trying to bargain with friends that got lucky on permits, and nada.   So I've maybe moved from the "young old" to "active elderly".  My mountain bike sits on its hooks, and I rack up street miles on my much more mellow e-bike.   I used to make a point of skiing blacks for a day, just to show I still can.  This year I decided to not bother, have worn ruts in my favorite green trails.  Aspen got 5 ft of snow last week, and I'm sitting in Denver trying to decide if I should do something about it, but will probably work in the garden instead.

I have recovered and moved on, but I definitely know I got hit.

My furnace humidifier is working again and the indoor humidity is now around 39%.  That makes a huge difference! It was mostly my throat that would get dry and a little irritated, but that doesn't seem to be the case now.  We'll see how it goes from here.  I'll still run the humdifier in my bedroom at night all year long... and use Xylimelts.

I lost 30 lbs last year while getting treatments (and a few weeks afterwards), but I've gained most of that back after 8 months.  So I'm back to "the struggle".  I think I'm still down a little from where I was last year at this time, so if I can drop just a few and hold it I'll be just fine.

My main interest is playing music.  I play guitar in a couple different bands and play many duo/trio gigs as well.  The neuropathy - before Gabapentin - was killing me at first.  It kind of hurt when I played and the vibrations from the strings were unbelievably annoying.  But since I started taking the Gabapentin I feel much better.  In fact, I hardly even notice the neuropathy when I'm out playing. There have been a few nights where it was killing me after I got home, but so be it, if I'm just going to bed.  I don't know how many years I'll be able to keep this up, and I know there are a lot of musicians that are healthy that give it up because it's too much effort.  But so far I still get energized from it so I want to go as long as I can.

I've thought about getting some friends, and maybe my kids, and go whitewater rafting again.  But it's been over 30 years since I went, and I'm not so sure I'd be up for it now.  Juat hitting the bike paths this summer will be fine with me.  It'll be mostly about water management (how much will I need and how much can I carry).  Last year, about 12 weeks post treatment, I went on 3 bike rides, about 15 miles each, 2 days apart, and each time I increased my pace a couple mph avg.  On day 3 it was still slower than what I was doing the previous year, but it was just nice to be outside and getting a little exercise.  Hey, I'll take what I casn get.

One of the nurses that was checking me in when I made one of my weekly stops to visit my docs during treatments told me "It won't be long until this is all just a bad memory.  I think she was completely wrong, and there's a song from the 80's that sums it up - "There is always something there to remind me".