Holy crow -- are you as glad this medical posting is coming to an end as I am writing it?? Reliving it has been rather a slog this week. It takes so long just to tell the highlights of 'the story,' and while it is cathartic and hopefully helpful, as I've said before, I don't dwell on it but just -- move on....
I want to thank all you readers for sticking with me through these posts, and for your generous and touching comments. It is a privilege getting to 'know' you all. This blogging thing has been an amazing journey from the start....it's so interesting to read glimpses into so many individual lives -- all unique - the one constant is my feeling that you are all so thoughtful, and open-hearted and generous. Thank you. Your support is a blessing. You are all wonderful.
Tomorrow I get an X-ray of my neck for Dr. Cutie (he has been pleased with the healing so far), and an H1N1 shot. I have debated and resisted this, but Excy wouldn't drop it. Finally after em-ing NIH and Emory drs. who both said I should get one, I am. My acupuncturist advised against it; felt it was a bit overblown and if I did get sick he would be able to handle it, but my drs said even a bad cold could shut down 'the kid' and they felt the precaution was worth any side-effect from the 'cure.' Blah.
In late Jan. or early Feb. we're off to NIH for another round of tests and will be able to gauge how the tumor on 'the kid' is growing. So far, the ones on the cerebellum and spine aren't changing (they can grow very slowly and often it's the cysts that pop up that can cause the problems, as was the case with two of my brain surgeries).
Emory dr. this summer argued that we know the kidney tumor won't get any smaller, and we should just go ahead and operate while we know it hasn't spread and while we have a donor. NIH argued that the surgery to remove the 'kid' isn't without great risk since they've been in my abdomen four times and there's a lot of scar tissue, and the possibility of messing up the remaining pancreas is great, etc.al. Also, the longer I am on my own kidney power the longer I am living without the possibility of the transplant not working out....I thought long and hard about what both sides had to say. I confess I did land on the side of removing the kidney and getting on with it b/c if the tumor does metastasize it's game over, since these tumors when cancerous spread like wildfire and do not respond to chemo or radiation. Finally told them both the way I felt but that hey, I'm not the one with the medical degree, so they needed to consult with each other and their staff and research teams and come to a mutual decision. Which is how the NIH opinion won out.
When the inevitable does happen, the plan is to have the surgery at NIH, then come home for dialysis until pathology determines there is no spread and I recover, and then go to Emory with C. for the transplant. They have assured me that in the meantime, if a brain or spinal tumor begins to cause problems, surgery for it should cause no additional risk to the kidney. It didn't when I had surgery this spring.
C. is incredible. It goes without saying that she is my hero, but I will say it anyway. She is amazing to me. She is a WOW (see WOW post 9/21), a wife, a mother, and a grandmother. We aren't real close friends n the sense of talking a lot and hanging out b/c we are both busy and she works. We are WOW sisters in the sense we share some common interests and out looks on life and I have always felt an affinity for her. She decided on her own she wanted to do this, she did a lot of research, and she has never wavered in her decision. She and I felt from the first that it would work out, and she was the first person tested and has been a high match, which is in itself sort of incredible. I have one sibling but he declined to be tested as a donor. My parents have the own health issues, and the cut-off age for donors is 60 anyway. C. is a blessing in so many ways.
Finally after counseling and a year of passing all the tests she can have done in AR, the time came for us to send her to Emory. She just needed one more test, which they assured both of us was almost a formality at this point. So when Excy came in a few weeks afterwards and said Emory said she wasn't a match -- we were all stunned. C. didn't take the decision easily or at face value but argued to re-take it. At first they said 'no.' She waited and called the dept. head, who had been on vacation that week. She said okay, but it probably wouldn't change anything. C. re-took the test - and passed. They said it was probably a problem with the lab! In the meantime, two friends who had heard the news were trying to call the 800 number to get started on being tested. The hot line is supposed to respond within 24 hrs to anyone who calls. After days of calling and getting no feedback they called us about it, and when we em'd we learned they had issued cards with the wrong phone number. All this wasn't giving us warm fuzzies about getting transplanted there. And you just do not treat people that way. Particularly people facing these issues. We finally got the head dr., and the head of the program, and it got sorted out. C. went to Emory over the summer and was treated very well, as we have been whenever we've been there, and so far, we are all on board. A nonprofit account had to be set up for my transplant costs and meds, and the WOWs are chairing that. So, things are falling into place. Fingers are crossed.
When I have the transplant, I will have to live in Atlanta four weeks. Since we were going back and forth so often for the appts and then for the neck surgery, we joined the High Museum, and we have good friends who live on Peachtree we stay with some, and Atlanta is pretty fabulous to visit- so much to see and do. I know I will have the hardest time missing my animal kids! There is a house people can stay in while recovering from surgery or during treatment, just off the campus.
I am lucky beyond measure to have survived as long as I have, and to have found the surgeons who have kept me going. NIH has also been a god-send, and has enabled us to have some sort of semblance of a life out from under the constant financial stresses and pressures chronic illness can create. I'm blessed beyond measure, too, for the stead-fast support of family and so many friends. Finally, for Excy, who has seen me and taken care of me in ways one would never want to be seen and in situations one hopes never to be in, and somehow, miraculously, still loves me, wants to be with me, and finds me desirable and lovable. Incredible.