Posted by Robert Jordan on March 31st, 2006 in the Robert Jordan's Blog category
First off, many, many thanks to all of you who have offered your prayers and/or good wishes. There are far too many of you, both here on the blog and elsewhere, for me to acknowledge you all individually, but believe me, you have my thanks.
I promised you some answers before I go off to Mayo, so I will give you some here. A few.
For Sidious, thanks very much for posting the overview of amyloidosis, but after conferring with my hematologist, I have to disagree with you on one point. You say that amyloidosis cannot be stopped, but it can be. The treatments have altered and progressed tremendously in the past ten years, and even in the last five. The best result obtainable would be a total remission, a complete cessation of amyloid production. But even a sufficient decrease in production can lead eventually to a decrease of the quantity of amyloids deposited in my heart. There are a lot of quirks in this thing, it seems. As an example of just how atypical amyloidosis can be, I offer this link to a survivor’s story: http://www.amyloidosis.org/casehistories/story.asp?story=32
Amyloidosis offers very peculiar symptoms, and very peculiar responses to treatment.
For Emma, and some others who urge me not to give up, I have stolen a mantra from Lance Armstrong and adapted it to me. “Amyloidosis picked the wrong body to hang around in. That punk should never have climbed into the ring with me. No retreat, no surrender. That mother is going down for the count. He is going down.” Sounds corny, but I can picture amyloidosis now. It looks a lot like Sonny Liston before he fought Ali the first time, back when Ali was still Cassius Clay. Liston was considered unstoppable. More than that, he looked unstoppable. He looked meaner than mean. Liston frightened everybody. In fact, he was mean enough that Ali went into that fight afraid. Look at the films if you don’t believe me. Ali won, but he didn’t expect to. I think he expected Liston to demolish him. Well, I look at amyloidosis and I see Sonny Liston with his shaved head and his stone-cold killer’s stare and his face that not even his own mother could have imagined with a smile. Only I know he can be beaten. That punk should never have climbed into the ring with me.
Various folks have asked about making donations, and I see that Jason at Dragonmount has already put up the information about donating to the Mayo Clinic Amyloidosis Program. Thanks, Jason. I think its best to keep the giving centered at one place. That way there is more chance of it having an effect. Maybe for me and maybe not, but remember what I said. Amyloids pop up in all sorts of places, and it is entirely possible that amyloid research will eventually lead to a cure, or at least an effective treatment, for Alzheimer’s. Your donation may just help with that, and that would be something to feel special about.
For Gerald Clay, who is Doctor House? The name isn’t familiar to me.
Perrab asks whether it was the pipesmoking. No, not at all. At one point recently, when they were trying to find out why I had a cough, I not only got two chest X-rays in one week but also a CAT scan of my chest. It turns out that despite all of my years smoking pipes and cigars I could be a poster boy for clean lungs. They are absolutely sterling! I’m thinking of licensing the film to Switzerland, Sweden, Iceland, various Rocky Mountain resorts and other places that supposedly have clean air. I am talking pristine!
A few people seem confused over what I mean by saying that I need thirty years to complete the books in my head. That entails a lot more than The Wheel of Time. There is A Memory of Light, of course, the last main sequence novel of WoT, plus two more short prequel novels. Then there are, possibly, three “outrigger” novels set in the WoT universe. There are the two trilogies of Infinity of Heaven, set in quite another universe. Plus there are several other novels and a handful of novellas that are set in neither universe. A few of them are actually set in our own universe, though not always without a twist. So there are a fair number, even to spread out over 30 years.
Several people wonder whether I’m upset over the possibility of losing my hair, or counsel me not to be upset. I’m not upset. One of the things I’ve noticed as being a possible help in all of this is that you make light of what you can make light of while saving the heavy work for where heavy is needed. Losing your hair is a sort of rite connected to chemo. I shall be a little disappointed if I don’t lose my hair, most especially since I have conned a number of male relatives into promises that they will shave their heads when and if I lose my hair. The chance of seeing that whole lot bald as so many eggs might be enough to make me shave my head if the chemo doesn’t do the job. Yes, I think it just might be enough. Keep this under your collective hats, okay? I’d hate for any of them to find out and spoil the joke.
For Pat, who asked subtly, yes, I am, but like my father and grandfather before me, I don’t advertise. We like to believe that no man in this country should feel in danger because of his beliefs, but times change. History tells us that, even here. Political practices we see as unthinkable were carried out as a matter of course by Thomas Jefferson and Abraham Lincoln. Who can say what tomorrow will bring, or next year, or next decade? So should you ask me again, I have no idea what you are talking about unless you are inside the walls of a Lodge.
I am taking a great many books with me to Mayo. There is a B&N not far from our hotel, but on the evidence, I, at least, may not feel up to much in the way of book shopping. So I’ll finally get around to reading Erickson, and I’ll have a tall stack of mysteries and thrillers, many of them older books by John Dickson Carr and Carter Dickson (the same fellow, for those who don’t know; the master of the sealed room murder). Mainly I’ll be setting myself up to laugh as much as possible, though, so I have a large number of Terry Pratchett novels, plus Donald Westlake (with apologies to Terry, the funniest man currently writing in the English language), P.G. Wodehouse and Tom Sharpe, an Englishman now deceased, I believe, but with a sense of humor so skewed and a world-view so outre that Carl Hiassen seems flat and ordinary by comparison. And I like Hiassen a lot. A number of his books are in that carton already winging its way to our hotel in Rochester.
Since we can’t read all the time, and no one really wants to watch television much more than they absolutely must, we have also sent up a Scrabble set, a backgammon board, a go board (though we will play go-moku, the simple version for teaching children) and a set of Apples to Apples, a game that Mike Ford and Elise Matthesen introduced us to.
For A’rrien, my prayers go out to you and your wife. I hope that she is getting better and recovering swiftly. I find it remarkable under the circumstances that you were willing to put even five minutes into posting to my blog.
For Jen, whose mother had a bad reaction to Reglan after an ASCT, thank you very much for the information, both from your comment on the blog and from the e-mail forwarded to me by a mutual friend. I have printed out the information you sent, and it will go with me to the Mayo among my papers. Again, thank you very much.
Several people have cautioned me against planning to make the June trips when I’ll be having the chemo in April, but I intend to make that trip if I need a wheelchair to get on and off the airplane and a chair to sit in to fish. That is part of my commitment. No retreat, no surrender. From day one, I push back. Amyloidosis picked the wrong body to hang out in. Come late June, I’ll be there in Seattle, and in Anchorage, and if I have to wear a mask, that’s just fine, because I WILL be there.
Well, there are a whole slew more questions waiting in the stack, but I am going to knock off for the afternoon. Tomorrow, Harriet and I leave for Minnesota, but my younger brother Reynolds arrived night before last, my close cousin Wilson arrived yesterday afternoon, and another cousin, Tom III, is expected to arrive any moment. It will be the first time in about 25 years that all four of us have been together. We are all having dinner at a good steakhouse tonight, and I’m looking forward to it.
Some of you may be wondering why I’ve come out and told you so much about is going on with me. It’s simple, actually. Over the years I’ve done my best to stomp on false rumors about my health, or about me having been hit by a bus or the like. As near as I can figure, rumor has had me dead about three times, possibly four, and near death’s door at least that often. So I looked at this in two ways. One, this was all going to be a prime source of rumors once word began leaking out. And it would leak out. So I might as well start the damage control early. Two, since I had stomped all over those earlier rumors, maybe I owed it to you to come clean from the start. Between the two points, I decided I would be open. I’ll post from time to time at Mayo, though I won’t make promises about how often or at what length. There will be times when I’m too sick to post; that much is a given. There will be other times when what I might have to post would be nothing you care to read. I do promise that I’ll try not to bore you.
So until my first post from the Mayo Clinic, you guys take care.
All my best, RJ