Tuesday, October 31, 2017

Trick or Treat!!!!

Halloween has been a weird day for me for the past 7 years.  On October 26 of 2010, I learned, PET scan clear..., after having had SRS to a melanoma brain met earlier that year on April 27, followed by surgical removal of the upper lobe of my right lung due to a bronchial met April 30, also 2010.   YAY!!!  Right?   Well, not exactly, as I noted in this post: Craziness again....

Even while getting my scans that October day, I had a strange feeling in the back of my throat.  When home, I took a look.  A black lump was sitting behind my right tonsilar pillar.  Sure enough.  Melanoma (that had NOT shown up on the recent scan) had struck again.  I ended up with a right tonsillectomy, with wide margins, on Saturday October 30, 2010.  B had to work, so I was handing out candy to the Trick-or-Treaters on my own just after, on Halloween.  Yes, I was back at work on Monday.  No, I did not gain access to any systemic treatment for all the melanoma I had been dealing with since 2003 until my nivolumab (Opdivo) trial in December of 2010.  So....yeah.  Halloween is a weird walk down a very bumpy memory lane!  Oddly enough, on the 7 year anniversary of that tonsillar fun, I suddenly developed a nasty sore throat...viral...not that big a deal.  Thanks little critters!!!  I'll be fine.  But, it has felt a bit like a super eerie somatoform disorder!!!  Trick or treat???????

Apart from that weirdness, Halloween has been fun.  Lots of cute critters in the office today.  And a week or so ago, Roo and her J were over for dinner and punk'n carving!!!

They have it down to a science!

Such cuties!!!

Spooky!  Right?
As for me, NOW, 7 years past most of the crazy....I am doing very well.  Today's sore throat not withstanding, I currently experience substantially fewer wheezing episodes than when I was in my nivo trial.  Amazing how good you can feel when you aren't dealing with repeated episodes of pneumonitis!!  I have rather chronic dry mouth and oral ulcer issues....NEVER so bad as when I was in treatment....and a small price to pay, really.  Joint pains that I experienced during the trial are resolved.  During our last hike, I realized that I am in better shape than I've been in a long while.  This is partly due to being able to leave the insults and punishments of immunotherapy behind, but also because I've been working at it!!  Rosie and I are in a weekly 'Barre Bootcamp' exercise class that kicks our booties!  I am running or on the elliptical at least 4 times a week in addition to that.  I have also added more core workouts, weights, and interval training to those work outs...and I think it is paying off!!!

I had one weird experience that has turned out fine, over the past couple of months.  When having my teeth cleaned, my dear hygienist was clearly alarmed by a lesion on the inside of my cheek.  She asked if I had bitten myself, and goof that I am, I had!  But, when I got home, I realized the area she was concerned about, was NOT the spot I had accidentally bitten.  So, good patient that I occasionally am, I pointed out the area to my oncologist at my annual check up.  She felt that it was vitiligo/scar tissue from an oral lesion, given my vitiligo generally and oral issues in particular, but wanted me to see an ENT to be sure.  Good Grief!!!  But, I did it.  The ENT was not impressed, offered to do a biopsy if I was concerned, but we opted to let it go!!

In keeping with this weird, wonderful world in which I live, just a few days ago B brought home this clipping in a bunch of pics and other bits and bobs a cousin of his had found when going through some of her things:

In this part of our local paper, dateline July 1995, you will see the cutest pediatrician EVAH!!!! - who had given advice on care and safety of kiddo's during the summer...AND.....  Look to the left!  The column headline is "Melanoma compound helps"!!  It is an article reporting a study out of Vienna, in which 53 Stage II and 15 Stage III melanoma patients had been given interferon.  Shockingly, the patients hadn't done very well, but the researchers still had hope that had they just treated the patients  longer, all would have been well!!!

How's that for a weird trick???  Little did we know or notice, in 1995, that life would be very different for all of us in 2003, 2007, 2010 and......2017!!!

And....so it is....  Maybe not just like we said it would be....but pretty damn good, anyway!!

Happy Halloween!  Can't take my eyes off of you, B!!! love, les