A Little News, Not too Important
Entry posted by Guest Robert Jordan
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Well, I'm back from my monthly (at present) visit to the Mayo, and I have some new results that I thought I'd share with you. That is the reason for this short entry. Just to get the news out. I'll do the usual a's to your q's in a post in a few days.
First off, a little explanation. The markers for amyloids are things called Lambda Light Chains. The normal range for Lambda Light Chains (you have them, too) is between 0.50 and 2.63. If the number gets above that, it is bad, and the higher, the worse. Two months ago, my number was 75. Not good. One month ago, it was 95. Definitely not good. There were some mitigating factors that made it maybe not quite as bad as it might have been, but the disease was definitely progressing. On Thursday, I was given the most recent test result. My number is now 13.
This is not a cure. I repeat: This is NOT a cure. There is no cure for amyloidosis any more than there is for cancer. The best you hope for is remission, and this isn't even remission. I will need to keep taking this medicine for a long time in order to keep the good result going. But it is the first time in such a long time that I have had any good news. I haven't lied to you in this blog, not ever, but I haven't always told you everything. I told you in the beginning that I wasn't going to. There was no need as I saw it to burden you with descriptions of every bout of nausea or the like. Wilson has spoken of rough patches. A fair number of those were hospital stays, for dehydration, for congestive heart failure (again), for whatever, once three of them in three weeks. Up to now, going back to the boxing metaphor, the best I've been able to manage for any round was a bare, skin-of-my-teeth draw, then drop on the stool in my corner, get the blood out of my eyes, and stay on the stool right up until the bell rang because the legs badly needed those few added seconds of rest if they were going to carry me through the next round. Some rounds weren't a draw, not even close, but I've got a good corner crew in Harriet and others, and they always helped me get ready to answer the bell one more time. This time, however....
For the first time, I've scored a round over Liston clearly and cleanly. There's still blood to clean out of the eyes, but not so much, and this time, I'll be already on my feet and waiting when the bell rings. As Harriet said to me, for the first time, we can be sure the light we see at the end of the tunnel is not a train. And that is such a relief, for me as well as for her, because for so long, as it seems to us, we have been sure that the light really was a train, but there was nothing to do except keep running toward it as hard as we could.
To all of those of who have posted that you are praying for me, thank you. For all of those who say you don't believe, but you send good wishes, thank you, too. You think good wishes; God hears prayers. To all of you who post at all, thank you.
We're still here, and we're still fighting. And I finally took a round from Liston! HOT DAMN!!!!
Back to you real soon, guys.
RJ
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