So I just got back from Dana Farber. I got good news.
Only, I'm not going to tell you what it is. I'm now officially too superstitious to talk about it anymore till it happens. So you won't hear another word about this unless it all goes (back) to sh*t as they taper me off the prednisone. So let's just all assume that no news is good news for the foreseeable future and leave it at that. Never let me be accused of tempting The Fates by seeking to influence things that must follow their own path to fruition.
In other, related news I learned two things today:
1. I actually have been diagnosed with Acute GVHD rather than Chronic. Both because of the speed with which it developed sans any of the other usual presaging symptoms and the speed with which it departed upon prednisone's arrival. It's weird to get Acute so late in the game, but I wouldn't be me if something weird didn't find its way into the mix.
2. My germophobia paranoia has been confirmed and justified. My doctor told me that one of the reasons I have done so well these past ten months is precisely because of germophobia. With a kid in preschool and moving into a new house and all of the ongoing stuff, he really feels that just being completely aggressive about avoiding germs is always more than half the battle. Because then your new bone marrow can have the chance to grow and strengthen and flourish without having to deal with additional assaults from infections and the antibiotics needed to cure them...and of course because then you don't die from infections that can't be cured. Few transplantees die from failed bone marrow; they've pretty much got that stuff down at this point. We die from infections: bacterial, viral and fungal, all as a result of long-term immunosupression. So whatever you can do (yes, wash your hands/use purell like you're getting a commission) to keep the germs out of your body is really the part the transplantee plays in helping to heal herself. It doesn't always work, and I will continue to be immunosuppressed for many months beyond my one year mark, and so will have to maintain the caution from germs and the avoidance of coughing/sick people. But it was kind of cool in a twisted way to be told that my germophobia coming into the transplant has helped me make it this far. It's like being told that your alcoholism feeds hungry kids! Or that your gambling addiction is helping to close the hole in the ozone! My hangups affirmed! YAY!
So, anyway, here endeth the Bone Marrow Posts for the near future. And sorry for the tease. I'll apologize to you IN PERSON when I can. :)
2 comments:
Great news! Shall we meet for lunch in June (I'll be in town on the 16th) ;)
I have heard that using too much of the Purell stuff is bad for you since you loose immunity (granted, I know you don't have much immunity to speak of...), what does your quack say about that? Old wives tale being spread by the soap and water commission?
I think you're referring to those antibacterial soaps with stuff like triclosan in them that have shown some potential to create co- and cross-resistance among bacteria.
Purell is just ethyl alcohol, which is just a disinfectant. It is also what is in booze, in perhaps a different percentage mix. So you can Purell without fear--just don't drink it. :)
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