Well, I will be getting a bone marrow/stem cell transplant in the near future. The doc’s at Mayo are stumped as to what blood cancer I have now, but I have one that will kill me if I do not get this transplant. The transplant doctor says it will happen in 6 to 8 weeks. The blood doctors say I may need chemo before I can have the transplant so I have no clue as to if the 6 to 8 weeks is realistic. I have the feeling that doctor A hasn’t spoken about it to doctor S. Makes me think the “team” isn’t all on the field yet.
Yes, you read that right, I have a blood cancer that they can’t name. It’s kinda like MDS and kinda like AML, but in it’s current state it is neither. One doctor said I was unique. I asked him if he meant weird. He nodded. We joked, we laughed, but this it serious. If I don’t get a transfer I probably won’t live to see Christmas.
Mayo was much nice this time. Even the big blood draw waiting room was pretty empty the 3 times I went there in 2 days. 22 vials of blood in 24 hours. LOL, Vampires. I have 1 good vein after chemo in 2015. That vein looks like a pin cushion. Actually the little red dots look like I got chiggers. lol.
On the 3rd day, I got a bone marrow biopsy. That makes 9 bone marrow biopsies in my life time so far. A few more to go before I die I am sure. Mayo gives you the option of being knocked out of it. I took that option and blissfully slept through the procedure. Weird that they do it on your side and hook you to oxygen, but hey, I didn’t have to feel the pressure or here the doctor grunt as the device used to collect the sample hits the bone. It really doesn’t ache as much as the other ones did either. I think I want all my bone marrow biopsies to be given by them for now on.
We found an incredible pizza place right near the hotel we were in. It was New York style pizza, calzones, and Stromboli. I just have to say if you are in Rochester and you like pizza, let me know and I will ask my wife what the name of the place was (I forget). The food was incredible.
We also found the place we will be staying at for all the transplant visits up there. The Gift-of-Life Transplant House is a non-profit house for people getting transplants and their caregivers. You get a private room with its own bathroom in a large house just a couple blocks from the front entrance to Mayo. They actually have 2 houses, at total of about 80 rooms I believe. They only charge transplant patients 30 dollars a night and when I am looking at 100 nights after the transplant 3000 doesn’t sound nearly as bad as 9 or 10 thousand for a hotel. Insurance will reimburse us the whole 3000, so it’s all good.
I know I should feel upset or scared or something, but I really feel pretty good about the whole transplant idea. A little overwhelmed by it all, but nothing negative about it. I heard what the doctors had to say, processed it as best as I could, and came to the conclusion that a transplant is what I need and there is no reason to worry about it now. Maybe in 5 to 7 weeks (transplant is supposed to happen in 6 to 8 weeks) I will start worrying, right now we (Teresa and I) are trying to get things lined up for us to be gone as much as we are gonna be gone (especially the 100 days).
Teresa isn’t going to be able to work while I am recovering (those 100 days I keep talking about). That is going to hurt us financially really bad, really really bad. I don’t know how we are going to afford all the outpatient stuff the doctors told us about. It’s going to be brutal on us. We’ll figure something out.
This is gonna ruin on Teresa’s 45th Birthday and our 25th Anniversary. Just sucks that this is all happening when it is. I had such cool plans that are out the window now. I have no idea what I will be able to do for those 2 important dates. Speaking of important dates, I am also still gonna be laid up for my brother’s 50th Birthday party. DOH. I really wanted to be there for him.
Speaking of my brother, he is trying to be the donor for my transplant. He was originally told her couldn’t, but as my transplant doctor called it, that is hogwash. So he is now waiting for the testing kit. Hopefully he gets that on Monday and then gets it back to Mayo by Wednesday. Then we would know. Right now the not knowing is annoying. Also annoying is that there is only a 25% chance he will be a match for me 😦 If he isn’t a match, we have to use the registry. The registry in 2015 cost us 3600 dollars (insurance does not cover the search) so I figure in 2018 it’s cost will be well over 4000 dollars. So I really hope my brother is a match.
I made a deal with Teresa, one that I totally intend to keep. When this is all said and done and the doctor releases me to go take on the world again. I will not go manic, I will not try to work, I will not try to go to school. I will accept that I am a disabled dude and go back to sitting on my butt. Now, this is going to be tough for me, I have no control over if/when I go manic. But I think I have come to the conclusion in life that I have accepted that I will never work or go to school again. Hopefully, when I get the green light to live my life that I fall back on the no work no school routine.
2018 is gonna suck, hopefully not as bad as 2015, but it is going to suck.
this video/song was picked by Teresa.