Mass General Visit Yesterday

My bone marrow doctor wanted to see me, so we headed to Boston yesterday.  We actually got there in 2 hours and 15 minutes, which is an all time record.  It usually takes about 3 and a half hours.  Yah, covid!! I really hope all those people keep working from home.  We left our house at 6am and we were home at 1:30.  SWEET!  The doctor appointment wasn't so sweet.

My labs were good and no sign of "c" word.  But...the GVHD is not good.  I have it in my eyes, skin, mouth, throat, my under carriage and liver.  I also have 2 kinds, acute and chronic.  The acute ones are mouth, skin and lower region.  Chronic are eyes, throat and liver.  I think I got that straight, it was a ton of information.  Acute is being treated with prednisone and the chronic is being treated with Jakafi.  Jakafi is a very expensive med and needs to come from a specialty pharmacy.  Luckily, my insurance approved it so now I wait for a call from the pharmacy to have it sent to me.  I hope this happens quickly.  The prednisone should start to help fairly quickly, because have sores and a raw mouth is making eating very difficult.  Brushing my teeth brings tears to my eyes.  Speaking of eyes...I have to call my eye doctor and I may need to get plugs in my eyes to keep the moisture in.  I never knew that tear ducts are on the outside of your eyes and not near your nose.  I found that interesting.  My throat will take a while to get better.  The muscles that help with swallowing are affected, almost like a muscle failure.  It sucks, but even with all these eating issues, I haven't lost weight.  I'm almost looking for to the prednisone effects and getting more energy.  Maybe I'll even start my chore list that I wrote when this shit show started. HA!!  One more bizarre thing, I'm slightly allergic to the donor cells.  Of course I am, why wouldn't I be?  The weirder things are, the more likely I am to have it happen.  I'm so damn special! 😆

I return to Boston in 2 weeks and I'm praying that there is a significant improvement.

I like to end with some good news.  I asked my doctor if I'll be able to perform my comedy at the graduation showcase at the end of July (if it's able to happen)  and he said YES!!  I have to wear a mask and stay away from everyone, but I can take the mask off to perform and then go back into leper mode.  That news made my day!!

Peace, face masks and healing

This is Zephyr the wolf. I ❤ him!  He's at the Wolf Conservation Center in South Salem.

Graft Verses Host Disease has exploded

My GVHD has decided to go a little crazy.  The medicine isn't working for my mouth sores, the rash on my face has gotten worse, my lower region stings like hell when I try to pee and poop,  I have red spots on my chest and swallowing is horrible.  Even trying to drink water is like drinking shards of glass.  This has not been fun, but believe or not, I don't feel too bad.  Well, I don't feel too bad as long as I'm not eating, drinking, peeing or pooping. 

I called my Boston doctor yesterday and he put me back on anti-rejection medication.  Hopefully, this does the trick.  The problem with this is, is that it suppresses my immune system and makes me more susceptible to the nasty virus.  UGH!  I keep telling myself that this is only a bump in the road.  I will be going to Boston in a few weeks to get checked out and hopefully get my final immunization.  I'm almost looking forward to seeing Dr. Mac, because he always makes me feel better about things. 

My sister was such a close match for my first transplant, that I didn't experience any of this stuff.  I'm still very grateful that she did that for me.  The good thing about having some GVHD is that the donor cells also attack random bad cells that may be lurking in my body.  All in all, not a bad thing...as long as we keep it under control.  Please keep me in your prayers.  Keep our country in your prayers!

Peace, 6 feet and masking it up! 😷 🙏