I’m writing this is hope that I get to post it in between cable modem crashes today.
My mind is kinda mushlike. Yesterday, Dr. Shin from Mayo Clinic called. He said that they did genetic testing on my bone marrow biopsy material and found out that I have genetic markers indicating that I need a bone marrow transplant. He said a lot more than that but that was the big thing. He said I was High Risk MDS (Dr. Wehbe had said it was low risk) and it could kill me quickly if I don’t get the transplant soonish.
I think I am supposed to be scared, upset, angry, something, but I am not. I am just existing at the moment. I had said at the beginning of this MDS issue, that I wondered why they just didn’t give me a transplant. Now I am going to get one and things should be better after that. Yeah, I will have to deal with Graph Versus Host Disease in all likelihood, and I will be on more pills for the rest of my life.
I was looking at a lifetime of platelet infusions. But now I am looking at chemo and radiation and then a transplant. I have resigned myself to the infusions. I had totally gotten my mind around that and had accepted that as my reality. Now, I have to rethink everything. Chemo is a no brainer, you just sit there and they pump poison into you. Radiation will be new to me. But how bad can that be? They kill all my bone marrow and then pump the good donated marrow in, according to what I have been told you can actually see the stuff going in the tube. Cool.
So, anyhow, I am trying to wrap my head around this new news and the new plan. Dr. Shin said I was a weird case. Alright, that’s nothing new to me. Been a weird medical case my entire life. My appointment with the transplant people at Mayo is on the 31st of this month. That’s a little over 2 weeks from now. I just don’t know how I feel about this. I think it’s just gonna take me a while to grasp it.
At least it isn’t a rush like with I was diagnosed with AML on Monday and getting chemo on Tuesday.
Pucky and Mojo will be being boarded at the Adel Veterinary Clinic on the 30th and 31st. They have a new boarding facility that is supposedly really nice. They aren’t even a full block away from us, so it’ll work good for us and their price was reasonable. When I go for the transplant, I believe my mother-in-law is coming to take care of the house and the dogs.
We are staying in the same hotel which my mom and I stayed in the last time I went to Mayo clinic. It wasn’t a fancy hotel, but it was clean and it’s connected to Mayo but underground walkway. This is a very convenient thing since we are going during the end of January which can be COLD and SNOWY in Minnesota.
I cancelled my D&D game tonight, my mind is in a weird place and I didn’t want to take it out on my players. Most of the players are good friends, so they have been very understanding. Should be back to normal in my head by next week and then they will get the results of their jail term. LOL.
Therapy is tomorrow afternoon. Kinda wish I didn’t can my old therapist now, her husband had just went thru the bone marrow transplant and her insights and tips would have come in handy I think. Oh well, hindsight is 20/20. Susan will be just fine, maybe she will be able to figure out what emotion set I should be in. That would help a lot.
Oh yeah, I have to get labs on the 30th, in the huge room with 100s of people with various health issues. It’s just so weird. So not what I am used to. But hey, it’s all good. They’ll get my blood and run the test virtually immediately and it will be all ready for the transplant team in the morning and Dr. Shin in the afternoon.
When I left Mayo last time, I was angry. They said there was nothing they would do for me until things got worse…. I guess this is worse. Dr. Shin was amazing on the phone. Answered all my questions and was so polite. His news was so not what I was expecting. But by the end of the conversation, I sorta understood what was going on and felt comfortable going back to Mayo. Besides, if I have to have a bone marrow transplant, why shouldn’t I take advantage of the #1 hospital in the nation for it?