Friday, March 22, 2013

When you can be lost....

Bright and early in the wee hours of Saturday am, I was awakened by significant mouth pain. The first few days this week felt as though I had had major dental work done such that when I accidentally brushed my own cheek it felt almost swollen and painful.  Even my gums were sore.  You know how it feels after you accidentally hit your gum while you are brushing your teeth and it is sore for days?  Well....maybe you peeps aren't as spastic as I am...but, was like that...everywhere!  I had actual lesions on the underside of my tongue while all else was raw, red and decidedly pissed off.  Good times!!!  Thankfully, it improved gradually each day and was responsive to ibuprofen which I took every eight hours. Today it is almost back to normal.  Anti-Pd1 is some crazy crap.

Shoulders, elbows and wrists have been sore.  But, not so much with my ankles and knees.

And, then...on Tuesday....let the wheezing begin!!!  My nurses have been quite alarmed...funny how nobody ever gets used to it...wanting me to get Decadron shots (can't be done!!!) and/or go lay down.  But...worked anyway.  Did decline an extra day on Thurs....and a good thing, I was VERY tired.  Probably due, in part, to little sleep because of wheeze and cough.  But, Bentie pulled out the big guns...nebulized albuterol, atrovent, and a higher dose of my symbicort....instead of my inhalers, and I am beginning to feel better.

Over 2 years of treatments and side effects and scans can make you feel as though you have lost yourself indeed.  On the other hand, I feel as though I have lost my right to complain, as there are others in much worse positions....who would give anything to be in mine. Love - c


  1. I HAVE hit my gums while brushing and it hurts like hell. So if your entire mouth was like that... I can't even imagine. I'm glad you gave yourself Thursday to rest and recoup. Hang in there. XO

  2. It seems that the side-effects were particularly bad this time! I wish I understood what makes the difference each time! I don't suppose there will be much focus on that until Anti PD-1 makes it as an official treatment option.