Well, after all the wait, my brother is not a match. So he can not be my donor. But according to the lady who informed me of this, they have a few preliminary matches thru the donor registry. So whereas I can’t get stem cells from my brother, I should be able to get a 100% match soon.
I am bummed, my brother is bummed too. I wanted to keep this is the family so to speak. Now I am gonna owe my life to some stranger. And what is worse is that the chance for Graph vs Host Disease goes up. No, having my brother donate wouldn’t have been the proof again GVHD, but going from familial to stranger is a significant difference.
We verified today that our insurance does not cover the donor search. So we are gonna have to pay for that (estimated 4,000+ dollars) and because my brother isn’t my donor, we are going to have to pay 25% of the donors cost of donating (no estimate available). It sucks, if we lived in almost any other advanced country all this would be free. Heh, we should have moved to Canada when I found my wife a job up there.
Mayo doesn’t let you talk to many people there. You have to contact them thru a 3 or 4 sentence message system, 1 question or thought at a time. I was a little frustrated (angry) today and all I could do is type in the little box. But I did get an answer to my question (sorta). Which led me to getting an answer to my question.
3 cheers for Anthem BC/BS insurance (I bet that rarely happens). They were very helpful today, both to my wife and to me. They are the ones who finally said that Mayo sent them stuff this morning and it takes 24 hours for it to get into their system. Heh, if Mayo would have said they sent it today I wouldn’t have gotten so angry. But it’s all good, things worked out, no one got yelled at, and I feel considerably better now.
I can’t believe we are down to 4 to 6 weeks (legitimately this time) until the transplant. That’s still assuming everything goes according to plan. At some point I have to go up to Mayo to get all my organs tested. We still have to take Pucky and Mojo to my mom’s house for pickup by my mother-in-law. I hope to get to stay a couple days there, just in case the worse happens to me (not trying to be morbid, trying to be practical). Not sure what else we have to do before the transplant but I am sure there is more.
It’s be a weird couple of weeks though. We have heard nothing from Mayo that I haven’t initiated. We feel a little lost in limbo at this time and have no idea if this is normal. Don’t really have anyone to compare notes with. So, hopefully now that Mayo sent the paperwork to the insurance company, things might just get moving. That would be super nice.
Oh I do have to say thank you to one person at Mayo. Erica, the social worker on my “team”. I called and left a message around 11:30am and she called me back at 2:30pm, not too bad. Just everything that was falling apart got put back together before she called back, so I thanked her for calling back and said I didn’t need her help right now. But big bonus for having a direct line to her on her business card. Every other card I got goes to a switchboard that may or may not get me to the right person. And by the way, there are 2 Dr. Shin’s in the Hematology department.
I also got the results on part of the chromosomal test on my last bone marrow biopsy. Basically 3/4th of my bone marrow is messed up or missing pieces. Very bad, very much showing cancer. They still don’t know and may never know what kind of cancer. I personally don’t care to know because it makes no difference in how it’s to be treated, transplant.
Talked last night to a guy who was 8 months past his bone marrow transplant. He said it wrecked him and he still hadn’t recovered. I still plan on at 8 months, going to Thanksgivingfest. Which means I am gonna have to be up off my lazy butt walking or stationary bike riding every day. Getting some stamina back. I know I won’t be able to be conscious for a 16 hour day like normal Thanksgivingfests. But since it is being held at Bruce and Cori’s this year: We don’t have to go anywhere and everyone knows this is going on and they will let me crash early. It’ll be fine with the Gang.
Definitely June and September visits are NOT going to happen. Not that I wouldn’t want to come to the Region, just that I won’t be able to. Simple as that.
Anyhow, love to anyone who reads this. I’ll try to keep you all up to date on happenings thru this whole mess. Peace.