Just got back from Mayo. Dr. Alkhateeb basically told us exactly what I already knew. My MDS is back. DLIs are up first, the first one will be August 12th, so no stay at my mom’s house really after the party (more on this in a bit). Have to stay a couple extra days to see if I have acute GvHD again, might or might not. Still unsure what we are going to do with the dogs, but we are working on it.
Chemo might or might not happen depending on the chromosome and the T53 mutation results which are due in early next week. Here is hoping no chemo. I really don’t want any more chemo.
After that is up in the air. He admitted we are playing this by ear.
Things I have read from reputable sites suggest a 2nd transplant and to that I will say no.
Dr. Alkhateeb wasn’t happy that the earliest they could get me in to have my tooth pulled is August 21st. So now, it is happening at Mayo on August 9th at 3pm. Which means tooth pull, drive to Mom’s, sleep, wake up, have a party, sleep, then probably drive back to Mayo on Sunday so we can be on time for the DLI appointment. I am going to be swollen and mouth sore and probably crabby at the party, I apologize now.
My back is holding it’s own revolution right now. I am in dimensions of pain. Just took a Flexeril, 2 Tylenol, and a pain pill. Hopefully that will relax my back, we shall see. I am fine if I don’t move. heh. I am almost at the point of asking Teresa to take me to the emergency room.
Moodwise I am all over the place. That is why I have an appointment with my shrink on Monday afternoon. I want to scream, I want to cry, I want to go do stupid things. I am a total mess.
All my blood stats were down more. The most significant is still my platelets were down to 69 from 77 last week. Dr. Alkhateeb said I can have the tooth pulled as long as my platelets are above 50. Thus the reason my tooth removal is happening next week.
What really suck is, I am gonna go through all the medical crap to add literally months to my life. The truth of the matter is I got 6 months to a year left on me. And then Hectic/Jeff/Mother will be no more in the physical but hopefully in the hearts and minds of my friends and family for years to come.
This post is gonna be short cuz I am hurting too much to sit here. And I don’t have much more to add… except the AIN’T DEAD YET party is on.