Hey quarantine peeps! I think I told you all that I went off of my anti-rejection drug about a month ago. Two weeks ago my mouth started getting very dry, but I didn't think much of it. I just thought that my body was adjusting. Thursday evening my mouth was bothering me so much, I decided to look in my makeup mirror on the high power check out blackheads mode. Holy CRAP!!!! The inside of my mouth is covered in white sores. The sides of my cheeks are covered with the white sores and even my gums are yucky. It scared me. What now??? I'm so tired of this shit. I called my bone marrow team yesterday morning and although I thought it was thrush, my team member said it may be GVHD. That is when the donor's T cells attack recipient cells. A little GVHD is good, a lot is bad. The PA set up a video appointment yesterday afternoon and she thinks it's GVHD because the timing of going off of my anti-rejection makes sense. Then, of course there is always a debacle of deciding which medication. First she said that I needed to get a medication from a compound pharmacy, then PA calls back and says that my doctor wants me on something else. I have to rinse my mouth 4 times a day for 4 minutes and not eat for 1/2 hour before or after. Not a big deal. The problem was finding the medication at a regular pharmacy. I have to say that the woman at CVS called everywhere for me and then finally the pharmacist saw that it could be one solution or another, so they were able to get it for me. It took from 3:00 to 5:00 to figure all of this out. I can't say enough good things about the service I received from CVS on Lake Ave Ext. It was so much better than the horrendous service from Home Depot, but that's another story.
I'm hoping and praying that this works and I don't have to make the trip to Boston. Lee would have to drop me off and keep busy in Boston, because he won't be allowed in the hospital. I know after that trip he will have to pee pee, so I hope he would find a clean place. I'll have to pee pee too, but I'll find clean potty in clinic. I just want to feel good for a long time and not be in constant fear anymore. Between this f'en virus and now GVHD, I'm a little bit on edge. I can deal with the pain, the fear is overwhelming. Oh and I have a post nasal drip cough. 😷😣
Peace, Hand Washing, and Quarantining,
I'm fine just frustrated!!!
