13 Days Prior to Transplant

Post Matched Unrelated Donor Transplant (MUD)

From: TyChaney@aol.com

Date: Mon, 2 Sep 1996 21:46:29 -0400

Subject: Day Minus 13 - Ty Chaney

Cancer is a very strange beast indeed. So far we are winning (I'm alive and definitly kicking). The next battle will be for the holy grail. I'm going for an Unrelated Donor Bone Marrow Transplant, also known affectionately as a MUD. I have a one in two million match, fantastic insurance, and wonderful caregiving. All I have to do is show up! And the place I'm showing up at is Little Rock Arkansas. Which is the location of a world renoun cancer research center that specializes in my particular beast (Multiple Myeloma). The MUD path is somewhat dangerous and they require that I relocate to Little Rock for about one year, or until the transplant settles down.

I believe that life and death are great teachers, and there is something profound in this journey we all share. That my own life has been much too much lived on the surface avoiding the depths of our existence here. In those depths we find each other in ourselves. Right now I'm pretty scared, not really understanding the weight of this, doing a lot of subterranian processing. It's remarkable how the mind works, I'm really trying to block out the fear, but when there is an opening (like 3am) it reaches out and grabs hold.. Feels like a grade b movie with a mad scientist bungee jump, though I don't think they will do an IMAX of this soon. Putting it in words seems to help. My other image is that of going to war. Something that I always thought I would have to do but never did. (I was a CO working with severely retarted children during Viet Nam) Wondering if I should write letters to the people that I love, just in case, and it strikes me that this is something that I should do. What do I want to say, what voice is important that they hear. It cuts though so much garbage that seems to clutter up relationships. How can I say everything in the voice of love and wonder. Underneath, thats all I can find. Unfortunately I don't get underneath very often, usually at great protest and pain. The surface seems so much more safe, what an illusion.

This week has been a week of testing, the cancer is stable, technically just at partial remission. The bone marrow biopsy wasn't bad. If your at ACRC I recommend Chevy (sp?) (a very nice Indian woman) for the biopsy. This was the third that she has done on me, and each has been ok (as good as bone marrow Bob). The high point of the week was placing the triple lumen. The 10 minute procedure ended up being the three hour surgery under x-ray. They almost gave up and would have gone through the neck, but I pleaded for them to give it another try. The thought of having a catheter in my neck for over a year..... I cried out of joy when they finally got the catheter through the chest.

Tuesday I start total body radiation for a week then four days of two different chemos with the donor marrow (day zero) scheduled for friday the 13th.

I hope to have email in the hospital and will start to follow the list more closely. Usually I scan once a week or so. I would like to share as much of this as possible if it can help others who are thinking about the MUD route. A MUD for Multiple Myeloma is still very rare, they do 4-5 a year at ACRC. I made the mistake of asking how many they have done in total (15) and how many are alive today (2). But I have a long list of reasons why my chances are better (which I can share if anyone is interested).

I think the odds are getting much better, and anyway I'm on the 'Ty' curve which is very unique :-)

Sorry this is so long, sometimes it helps just to get feelings into words. Let me know if this is ok for the list and I can do as detailed chronicle as people want.

Ty

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