Well, I was wrong, there is such a thing as a not good morning when you have MDS cancer. Today is such a day. Last night, while laughing and having a good time with Teresa, we discovered that my GvHD (Graph vs Host Disease) is gone. Now normally hearing a disease is a good thing, is this case it is not. The GvHD proved that my transplant was doing something, and it should have it for the rest of my life.
My GvHD was really dry skin. Now my skin is smoother than its ever been. To be honest, I am scared and it’s the weekend and I can’t get ahold of any of my doctors till Monday. The last time this happened I got 2 DLI (Donor Lymphocyte Infusions), but I can’t get those from my donor anymore. So, I am very unsure of what is next. I know if something isn’t done, I die and I am not ready to die. Nope, not ready yet.
So, I got to relax, there is nothing we can do about it till tomorrow. Relaxing is easier said than done. I didn’t sleep well last night, I am hoping I can nap some today. Had weird dreams that kept waking me up last night, made for a crappy night. Now I get to look forward to a crappy day.
I have the definite feeling that when I hear back from Dr. Alkhateeb we will be making the trip to Mayo sooner than May 28th, like maybe April 28th instead. Dr. A will probably not want to wait that long for my bone marrow biopsy. Which should be fubar now. All along I have been thinking how clean its gonna be, and now I know its not gonna be. THIS SUCKS.
I emailed Dr. Wehbe too, but even if he responds today there is nothing he could do for me. This is Dr. Alkhateeb’s ball game that as of right now he doesn’t know he is playing. Another swerve on the road that is my life. I said I wanted a 2nd transplant sooner as opposed to later, I just may get it. Or this might be the end and I just don’t know it yet and my body hasn’t caught up to it yet.
Now, I need to talk to someone, I have a retry video appointment with Dr. Eastin on Thursday. I hope I’ll be able to keep it. If I am at Mayo, that is highly unlikely. I have to remember to cancel it if I am not able to make it, 24 hour notice or they charge anyway.
I’m a mess right now (in case you couldn’t tell). Totally freaking out. NOT in a good place in my head. I need breakfast, yes, maybe that will calm me down. HA. It might do something for the knot in my stomach at least. Gonna take a Xanax and hopefully mellow out some.
So anyway, I am asking for all the prayers and good thoughts yet again. Thank you.