Hi, guys. Sorry this isn't the usual health update, but I'll get to that in another post shortly. A few days, but no more, I promise. This is about something else completely. In fact, it was inspired by a comment someone posted on the blog. I liked the idea and took it to my agent and my publisher. They like it, too.
We are going to run a contest to find the 15 best pieces of fan artwork out there. I know there is some really professional quality work because I have seen it. Submit your work to Jason Denzel ( those who read a version of this announcement on a few other sites will see somebody else to submit to; dinna fash yourself. That means don't worry about it.). Jason and a few other webmasters will act are first judges as to which pieces to send on to me for final judging. The winning pieces will be gathered into a calendar, and here comes the important part. The normal royalties this calendar will earn, along part of the profits, will be donated to Amyloidosis Research at the Mayo Clinic in Rochester, MN. They are really home base for that in this country, quite aside from keeping me alive this far. Now that means that by submitting and having a piece chosen to send on to me, you will be signing away future publication rights for that piece. Winners will get a copy of the calendar, of course, with my autograph and a note of acknowledgement on the page containing your artwork. For monetary rewards, you'll have to hope that some publisher sees and likes your work well enough to offer you a commission. Publishers are always on the lookout for new artists. Otherwise you must settle for the glory, such as it is, of being published in the calendar. Style doesn't matter in this. Manga, hyper-realism, current cover-art. Whatever. Anything and everything is acceptable as a possibility. It will be the quality that counts, not the style. If you want to try it the way you think Rembrandt would have done it, go for it. Though I have a hard time picturing that. Rand as a member of "The Night Watch?" Well, maybe. Try whatever you like. I hope to keep this contest running year after year for a number of years. Possibly, in a few years, there will be enough winners to collect as an art book, perhaps fleshed out with a few artists who didn't quite make the cut in their particular year. So go for it, guys. Let the farce be with you. Oh. Sorry. That's another series, isn't it?
Take care, everybody.
Back to you, soon.
Editor's Note: The details of this contest (rules, timing, etc) are being worked out right now. Once everything is settled, we'll post them up on Dragonmount, Wotmania, Encyclopedia WoT.
He reads your posts. I read them. All of them. You are all great for your caring and support. Thanks from the recesses of my soul. All of you WOT'ers are like extended family. But as family, I've got to ask that you allow RJ the time to heal. He's been extremely forthcoming with his status, and will continue to be regardless the news. But unless you've seen someone in a similar fight, you really have no idea how much of a struggle he's in. Thank God he's a stubborn ole cuss. Without that he could have easily said this is too difficult long ago and the game would have been lost.
Not that we shouldn't still be concerned about his health, because we should. But he's as fine as is possible. At the moment, he is very, very tired. Rehab is hard work. The medicines he is on can have dreadful side effects and have to monitored constantly. A slight imbalance causes all manner of issues. In his writing to you, he has glibbed over them as simply "rough patches". Rough? As fans of his writing, you'll not believe it, but he does have a talent for the understatement. Rough? I'd hate to see something Really Rough. Those who have been through something similar know what it does to you. It zaps all of your strength. That's where he is right now. His words, "I'm as weak as a kitten". The great news is that the LLC production is in check, not officially in remission, simply in check. But, his system still has to shed those that were deposited in his heart, which will take time, lots of it. Waiting is hard work too. Patience is not something that either he or I possess in great quantities. His doctors told him 6 months, maybe a year till he feels himself somewhat back to normal. We chat frequently and laugh through it as best we can. That's a big part of my job in this journey, making him smile. I found myself doing the same with our beloved Harriet this past week. She's one of the two strongest ladies I know, still the load gets heavy. Thank you for always including Harriet in your well wishes. (FYI: The other woman of strength is my other mother, aka mother in law, who is a real lady and a tiger. Wouldn't want her in the other guy's corner.) Janet and I will be with Harriet and my Brother/Cousin next weekend, and all involved can hardly wait. We haven't seen them since Labor Day, too long.
Physically he's a long way from being the man that many of you have met at events. But were you to speak to him via telephone, you'd not know that anything was going on. The voice on the phone is strong and resolute. Lord I love him for that, among many other things. But, he has to follow the advise of his doctors, do as Harriet says (we all answer to someone) and be patient, and careful to allow for his recovery to continue. Thus, we'll need you to be patient too. Hang in there gang. The Dragon is tired and may be dragging, but he is winning.
4th of 3
Jason here. I received an email over the weekend from Wilson. He actually posted a little news in reply to another blog post. He asked that I bump it up to an actual posting. Here's what he said, in reference to RJ and Harriet:
They're at the Mayo for the 1st 90 day check as I type this. The number is now 2.7. You'll have to get the rest from the big guy.
4th of 3
Dear Jason, something to post, to celebrate the season -- and Jim's WONDERFUL news. Love to you all, Harriet
A Genuine Wham-O
Lists for cards, lists for cookies,
lists for books and scarves and games
and candles. Maybe
a bell would fit in there.
Maybe I'll give it up and be a witch.
My ersatz Frisbees –
cards and scarves –
are packed with love,
but never seem to hit the mark,
the tender lips, the gleaming fangs
of those I throw them to.
I'll borrow a young terrier bitch
and lob a real one for her.
Frisbees of love? We live in one:
the Milky Way. Or are you going
to fob me off with dusty physics,
lumps of coal and willow switches?
Please! The world sends me huge bright disks
of love and light.
Although it's hard to see them, hidden as they are
in books and scarves and games
and candles. And a bell.
– Harriet Popham Rigney
This is a very short post, I'm afraid. I know it's been awhile since I posted last, but various things kept getting in the way. Still, here goes, with the best Christmas present I've ever received. Something I had to share without any delay.
As you all no doubt know by now, the marker for amyloids is something called Lambda Light Chains, which are found in the blood. The normal range is between 1 and 3. Five months ago, I was at 75. Four months ago, that had gone up to 96. The higher the LLC number, the worse for you. So I wasn't doing so hot.
This morning the Mayo gave me my most recent LLC number. 3.14!!!! No, that isn't a typo. 3.14!!! I'm on the brink of normal. Something I never thought I'd say about myself in any regard, frankly. I've got Liston the ropes, guys, and I really believe that your prayers and well-wishes have helped put him there. Now I just have to put him on the canvas. This isn't a cure, and I'm not even sure whether it will count as remission, but it means I'm still on my feet and will be for a while yet. 3.14! Hot damn!
Merry Christmas and Happy Holidays, everybody.
I'll talk to you again after the 1st.
I'm back a little sooner than usual this time, because I realized that I left off something very important when I was advising some guys dealing with illness. Maybe the most important thing of all. Laugh. Make her laugh. Make him laugh. Make yourself laugh. Keeping your spirits up has a really great effect, believe me. There are lots of situations where it's hard to find something to laugh at, but in most situations where you can grumble, you can find a laugh in there if you look at it a little askew. And you know something? Making her laugh is almost as good as laughing yourself. In fact, if you make her laugh, soon enough you'll find that you're laughing along with her. There is all sorts of stuff that you can laugh your way through when trying to wade it just doesn't work. Remember, nobody is asking you to laugh at everything. Nobody is asking you to stop grumbling. But the more you laugh, the less you'll grumble, and the better you'll feel. The better you'll BE. I mean better in the sense that your doctors will notice. It works. I know. It works.
Hi, Emma. Just thought I'd remind you that I know you're out there.
I logged on this morning to check whether I needed to add anything to this post, and I saw the Get Well Robert Jordan sites link. Thanks, guys. Thanks a million.
For Steve and Vickey, you are both in my prayers.
To Phil M, George Chuvalo is certainly a blast from the past. I doubt I've even thought of him something above 20 years. Maybe upwards of 30. He was a real iron-man in the ring.
For Patrick Crunkleton, Harriet and I both look forward to returning to Rome. We enjoy Italy a great deal, though there are occasional "animated discussions" over the merits of Rome versus Florence versus getting off into the Tuscan and Umbrian hills, while avoiding most tourists, of course. We have run into some festivals up there that we had no idea were happening, and they were great fun despite the (other) tourists. And some of the best meals I have ever had were in little Italian villages where there was no English on the menu (always a good sign anywhere) and maybe six words of English available among the entire staff.
To Bruagh, thanks for the info on using the accent grave. I accept it gratefully. Despite your connection to that rather dubious institution, Wofford.
For Magus of Norway, you, too, can win, and it doesn't depend on me winning. You can do it.
For Jonas, I tried paragliding a few years back, and it was a lot of fun, but it seemed somehow gentler that skydiving. I guess I want the rush.
Oh, just to side-step for a minute, "Let slip the dogs of war" is not Roman, though Shakespeare put it first in the mouth of Antony in Julius Caesar. Cry Havoc, and let slip the dogs of war. The first part, Cry Havoc, was a recognized standard command among English Medieval soldiers. As much so as "attention" or "about face" would be today. It meant to turn the soldiers loose to loot and cause chaos. Dogs of war, of course, would have been recognizable to Shakespeare's audience as a term for soldiers. Sorry about that, but I thought I'd get it in.
For Lelon White, well, it looks as if it's just as well you didn't do a hammer reschedule. I'm glad you got that caught in good time. Thank God! You are in my prayers.
For Kris Lorenzini, I'll remember that phrase. In the mouth of the wolf. I like it. You may see it turn up in a book some day.
For Richard Maxton, I'm glad that I am able to help, in however small a way. You have a rough job. We used to know a fellow -- he has since moved to another city -- who was a pediatric oncologist. I always thought that was about as rough as it could get. My prayers are with you.
Another aside. Some of you comment that you don't expect I will see your post. I do. I read every single post you guys make. I don't respond to them all simply because there isn't sufficient time. But I do read every one.
For Child of Lir, yes, Venice is a terrific place. Though I must say that having dinner in one of the restaurants that line the square in front of St Marks while keeping one eye on exactly have deep the water in the square has gotten can be a bit nerve wracking. You know the waiters will clear you out before you're trapped, but, well, what if they hit the wine a little too heavily in the intervals? Soupe au pistou is simply a vegetable soup with parmesan and pesto. From southern France, I think. Very good in any case.
For Nicholas Papas, I thank you very much for the offer. I'll file it away until I actually get my Harley, then we'll see whether you still feel the same. In which case, I will take you up on it.
For WD, I may watch the so-called Big Game, but I doubt I'll stick around beyond halftime no matter who is winning. For me, the highlight of the season came with the Defenestration of VMI. Keydets bounce. Did you know that? Drop them from high enough, and you get a definite bounce. Maybe we'll get one of the upstate boys for a money game soon. This year, it was Pittsburgh and Texas A&M. Of course, the problem is that once we get the kinks out of Kevin Higgins spread offence, nobody will want to play us. (I think he was 45-3 his last three years at Lehigh, before going to the pros.) It happened the last time we got our offence rolling, though it was the triple option back then. Still, we counted USC among our victims, along with Arkansas and others. Until they started saying, no thanks. We only managed a 10-7 loss to the Tigers, as I recall, but maybe we can do better this time around.
For Coral, I'm sorry for your loss. But I do believe that your brother will know you are finishing the books for him. And I promise to finish them for you, and for everybody else out there.
Well, that's about enough of that for a short addition. It is about time for lunch, and I think I'm going to have a bowl of the left-over soupe au pistou. Soup, and stew, are always great if they have a few days to sumption around, letting the flavors mingle. I know some disagree with that heartily, but I stand where I stand.
Take care, guys.
Well, I've been offline for a while, but I thought you had the news pretty well from Wilson, plus I needed to rest up, frankly, having had a stretch of in the hospital, then out of the hospital, in and then out, in again, and this time out on a Saturday so I could get on a plane on Sunday, have my tests done at the Mayo on Monday, talk with the doctors on Tuesday, then drive to Minneapolis to speak at Mike Ford's Memorial service. Frankly, I got home in some ways stronger than when I left, but in others, well, I was ready to lie down and sleep as long as I could get by without having an ice cube slid down my back. I really needed some rest, in my own bed not a hospital or hotel bed. And every time I've thought about posting here the last week or so, I just couldn't find the energy to do more the most cursory sort of entry, likely dull-witted with weariness at that, and I thought you deserved more than that.
You might find a small interest that I codified a list of things to be done once I have regained (1) over-all strength, (2) hand-eye coordination, and (3) some degree of balance. I am convinced that I will recover these things -- the strength seems the easiest -- and have even agreed, after some urging from Harriet, to submit my hands and feet to acupuncture! Go figure. Me, the Great Skeptic! Well, she's a cousin of sorts, through marriage -- it can get complicated in Charleston -- and she is fully qualified and all of that.
Anyway, the list.
1) Purchase Harley. I already have this picked out, as I think I've told you, and though Harriet SAYS she won't mind riding postillion, I'm figuring a sidecar is my future, too. That's okay. But not quite as soon as I hoped. It won't be under the Christmas tree this year. Maybe next.
2) Sky diving qualification. I'm not talking buddy-jumping strapped to some guy's belly like a kangaroo trying to escape from it's mother's pouch. I mean to take the whole nine yards so that I can walk into any place where such a thing is possible, rent a chute, rent a plane to take me up, and go jump, no questions asked. Wilson says we are too old, and my knees are too bad, for this sort of thing, but the thing is that having achieved that qualification, I doubt that I will every use it. I will have done it, however, and that will be enough. When I was young, before my first tour in the Nam, I volunteered to airborne. I got turned down on account of bad eyes, and that is something I have regretted ever since. That I've held on that regret so long indicated something to me, because I have always operated on Lan's rule, bury your dead and ride on. I don't hold onto regrets. This one remains, however. So I will try to lay it to rest once and for all. Besides, I WANT to jump out of the bloody plane!
3) Take up ball-room dancing lessons with Harriet. Funny, after saying that I don't hold onto regrets, that I should come to this one straight away. You see, before I began having nerve problems with my feet and loss of balance, I was a pretty good dancer. Good enough to have 20-something guys complimenting me on my moves and women of various ages cutting in on Harriet to dance with me. It was also neat to be addressed on the street, sometimes by women I could swear I never met in my life, with cries of "Hello, dancer!" Well, I want that back. And, since I am completely untrained -- I grew up poor; there was no childhood dance class in my background -- I want to take the lessons because I want some dances, the tango, the rumba, the cha-cha, that you just can't fake. And not that Dancing with the Stars baloney, either. That is strangely entertaining, one might saying weirdly entertaining, much like a train wreck involving Borat and Rush Limbaugh in clown makeup, but in most cases, the dances they do have no resemblance whatsoever to the dances they claim to be. Let them take their so-called tango to Argentina. And see if they can get out of the country alive. Anyhow, #3, dance lessons.
And 4) Take up golf. This something I had just begun to get into when things when blooey in general. You need balance to make a good swing, and I found out I have a pretty good natural talent for the game. My drives are straight -- in two rounds with Wilson and his son, Jonathon, both golf fiends -- I lost fewer balls than either of them, and if the length of my drives has been somewhat erratic, I was beginning to get that straightened out. I figure if I can get the occasional but not uncommon 200 yard plus drive without golf shoes, which means no proper swing, I can match and top and that with the shoes and with practice. It only needs the balance back a little. And you know, it's fun reading the greens for puts. I got a few tips from a pro who was earning some extra money by caddying at a club where I'd won a round in charity auction, and he had some wonderful tips for that.
So there you have it. Oh, finishing A Memory of Light, of course, and getting started on Mat and Tuon, and some others, five to ten years after the Last Battle. Those go without saying. Not a bad plan for the coming year, eh? And fishing. I'd like to call Billy Glenn and run up to Cape Romain, where the beaches are so pristine you can walk for miles without seeing a footprint not your own, where the truly big redfish, 40-pound, 50-pound, 60-pound, are cruising down the coast in the surf, too big to keep, of course, but great fun to catch and release, using circle hooks for survival of fish, and if a little time goes by without a redfish, then a 6 or 7-foot blacktip shark is sure to grab hold, leaping like a bloody tarpon. It's a great day's fun, with the wind cutting in directly off the Atlantic and nothing but water between you and Portugal. But Thanksgiving is almost here, and Christmas is acoming in, Lud sing God damn, with lots of house guests for each and also in between. No time for fishing. Unless I sink to trying an ultralight fly rod in the goldfish pond. I don't think that would play well with Harriet. Besides, there's no real way to get a decent backcast. I know. I've checked, and believe me, I can find a backcast in a china closet if one is to be found.
The news from Mayo, for those of you who doubted Wilson: another drop in the Lambda Light Chains! There simply wasn't room for the truly spectacular drop that I had last time, but I still got roughly a 25% decrease. This leaves me in double digits, barely, but closing on the normal range of roughly between 1 and 3. This despite having been pulled off the Revlimid during the second hospital stay because my kidney numbers had gone wonkey. Life is one little adventure after another around here. I asked how the study was going in general, were others getting the same good response that I was; my answer was a shrug and a reply that the other numbers were all over the place. The Luck holds. The Iceman remains asleep -- thank God! -- but Ganesh has wakened, and he's stomping down that path through the paddies again. So, I got the kidney numbers back under control, I am back on the Revlimid, and I don't have to return to the Mayo until January, and at further three-month intervals thereafter. They will send me kits for monthly blood collections here which will then be sent to the May for their own testing, and I will also get my meds by mail. Hot damn! Another round to the Kid over Liston. One more lance passed unbroken in the list.
(These images may seem over-the-top to a lot of you, and I suppose they are, but I find they help me. Having a physical enemy to confront is easier to imagine that the ephemeral image of a disease. I think that is what Armstrong, from whom I first stole the idea, had in mind. And in many of them, I see myself exactly. If I am not exactly Bertran du Guesclin pledging a feat of arms this day as shall ring through the courts of chivalry in order to do honor to my Lady -- though, God knows, I would that I were -- I do see myself as that guy getting up off the stool and stalking out to meet Liston one more time. Keep the hands up. Swallow the blood; they're tight on stopping bouts for bleeding, these days. Ignore the legs; the legs don't matter. Just keep punching. No matter what, take what he gives and keep punching, because sooner or later, you'll crack his head or he'll crack yours. So keep punching, because you know who's going to be left standing when this is over. Just keep punching. And they make attitudes easier to explain, too. It becomes easier to say you'll fight to the last ditch when you can look around and realize that you are already in the last ditch with no line of retreat open, that there is nothing for it but to do a quick leopard crawl down to verify ranges, then back to the ditch to lock and load. And fix bayonets, because surrender isn't an option. Hold until relieved. The hardest order in the book to receive. But that is all there is. That makes it clear, if in a flamboyant way, and makes for a short explanation, if only because the listener is afraid of more floweriness if he enquires further. Which leaves me to ask some lovely who has just brought me yet another plate of goodies whether she really thinks I should leave my hair this length; isn't it a bit short? Much more fun. And it gets LOTS of grins from Harriet.)
Well. That's probably flamboyance enough for a novel or two from some guys. Mike could make three novels and half a volume of poetry, in various styles, on it. Not brief, though. I began my comments at Mike's memorial service by saying that I had worked hard to leave out incidents in the interest of brevity. "I can be brief, you know," I said, getting an unexpected laugh. And another for, "I once told Mike I was going to be brief about something or other, and he laughed so hard he snorted Bass Ale through his nose." Oh, well.
My thanks for Mr. Robert C. Fertig for his donation to the Mayo Hematologic Malignancies Program -- Amyloidosis Research. Every penny is a help toward finding a cure for this condition, which is usually fatal. It looks very like I am dodging the bullet, but then, it seems that I am become Ganesh again, and if you will forgive me mixing metaphors, once again the baraka is with me and rides my shoulder. Most people don't have my luck.
For SSG Travis Kennedy, thank you very much, both for passing your story along to me -- frankly, I never imaged one of my books saving anyone's life, and I have passed your story on to various people under the title DO YOU STILL THINK I SHOULD WRITE SHORTER BOOKS? -- and for the work you are now doing with our wounded undergoing rehab. Thank you doubly, for your service in the Sand, and for your service now.
For Jan Lupton, yes, it is very scary, but you can make it through. The Mayo is the best place in the world for you to be getting treatment. If they offer you a place in the Revlimid study -- that is what I am taking -- grab it. Though of one thing I have been certain since very early on with the Mayo. If one treatment doesn't work, they will always be ready with something else. The keys are two-fold. First, never give up. No matter how bad things seem today, you just don't give up. You don't do it. As long as you believe that things will get better, they will. I don't know why or how that works; it defies logic; but work it does. It is when it begin to believe that there is no hope that things start going bad. So DON'T GIVE UP! And second -- this one puts a burden on you, but based on how my own wife has taken that burden, it seemed to help her -- his job is to keep breathing. Your job is everything else. If someone at the Mayo hasn't told you that yet, I'm sure they soon will. I'm just jumping in ahead.
For Lelon White, getting off the heavy drugs for a month is a dream. Take all the advantage you can. Missing Patrick Stewart in the Tempest is a heavy price. No thoughts of trying to reschedule the doctor? Or doing what I call a ball-pein hammer reschedule? "Gee, doc, I wrote it down, and I could have sworn the appointment was for today, not yesterday." It works. It works. And Stewart, in any Shakespeare, is not to be missed.
For Gary Bucey, hang in there, man. You can make it. I won't try to make it sound easy, because you sure as Hell know it is anything but. Just concentrate on breathing. You keep breathing and leave everything else, including worrying about everything else, to somebody else. You'll be surprised how much taking up some of that burden will help your wife, because she is undergoing her own kind of Hell right now. I know. No matter how she tried to hide it, I could see it in Harriet's eyes, in the days when we didn't know, in the days when it looked like I had no hope, just will power, and as much as she loves me, she wasn't sure my will power by itself was going to be enough. Will power really is a key. When you are sure there's nothing left, then you tell yourself, "I'm not giving up! I won't quit!" And if you have to crawl into the ring, then you by God crawl, man. You make the bell any way you can, and if you have to pull yourself to your feet by holding onto Liston's trunks, you damned well do it. I know the pain. You can beat that. You can. It is surprising how you can make friends with the pain when you have to. Somehow, it doesn't hurt so much then. It just is. But don't you give up. I expect to hear from you again. and again, for ten or twenty years to come at least. Don't disappoint me, man. Hang in, snake,
For Jerry J, you and your wife are in my payers. Once again, a post has manage to humble me. I can hardly image, with your wife undergoing multiple surgeries for malignancies, that you could spare time for a thought for me, much to make a post.
For Kaius, we haven't broken out the champers just yet. I thought when I hit single digits would be a good time, so with luck, it will be in January. Knock wood. I'm glad you liked Harriet's poem. It took me a long time to convince her to begin submitting her work, and she had just gotten publication in half a dozen magazines and poetry journals when I blew up in her face, and she lost energy for writing. I see signs that it is returning, though. For those who might be interested, by the way, the word bard refers not only to the fellow with a harp but also to horse armor. A horse wearing full armor was said to be fully barded. It seems to me that it also references some part of removable castle protection as well, but the memory is vague, and I am too lazy to go browse the proper books and make sure.
For James Schaller, anything anyone wishes to send me can be mailed to:
C/O Sobel Weber Associates
146 East 19th Street
New York, NY 10003-2404
Okay. I've been going on long enough, I think. I haven't looked at my e-mail in about five or six days, so God only knows what it has piled up to. A thousand or so, I imagine, just at the main address, and I run six to keep things separate. I know you'd rather I spent the time answering more questions, or talking about what is going on here, but I really do need to answer the e-mail. And what is going on here is that Harriet is making soupe au pistou for dinner, and though it is about 3 hours till time to sit down, I am beginning to smell it. So I shall have to answer e-mail while drooling. That is what is going on here.
Good-bye until later, guys. I'll try to make it shorter interval this time. My apologies again to everyone for the delay. And my very great thanks to everyone who posts. Whether or not you offer prayers or well-wishes, whether or not you have some personal tragedy of your own to share, every post is a lift to me -- yes; the tragedies, too, because I have a chance to reach out and offer what I can, which doesn't happen often under my present circumstances --and I thank you for them.
Dear all: Most sincere thanks from Robert Jordan (via Harriet) go out to
Michael J. Fredericks, Jean Verney-Carron, Evan Harmon, Lisa Kirwood,Ryan Salsamendi, Emma de Laat (hello, Emma!),David Freeman, Helena Taylor and Janet Taylor
for gifts to the Mao Hematologic Malignancies Program -- amyloidosis research. Thank you one and all.
Jim is taking it easy today, since we go up to the Mayo tomorrow for a routine workup -- but as a consolation prize, here is a poem of mine:
Bard: n., a full set of equine armor.
Your head seethes with essential magic,
its glittering chanfron deep and wise,
high-buffed, strong in dream and reason.
and your escutcheon shining pure.
The crinet of your glistening neck,
glides swiftly to the brazen peytral
of your great roomy chest.
On it emblazoned script in gothic flame:
Live in today, live for tomorrow.
Your flanchards bearing you in strength,
shine bright below your gleaming crupper.
And for your groin: festooned galloons,
fine textiles in a nest, and heavy gold.
All worlds flare in your burning eyes,
as soul and words bring fat new flames
to the pale page, and to my greedy heart.
Hope you enjoy it . You have all been a wonderful support for both of us.... I guess this is a little thank-you token. Best, Harriet
Hi, guys. I was going to put up a regular post here today, but that is going to have to wait a few days. You see, Mike Ford died last night. To you, he was John M. Ford, two-time winner of the World Fantasy Award, including for Winter Solstice Camelot Station, the only poem ever to win the short fiction award. Or maybe you're a Star Trek Fan and remember his Star Trek novels, such as How Much for the Just Planet? (the only flat-out comedy among all the Trek novels, I think) or The Final Reflection, the only (to that time, anyway) Trek novel done from a Klingon point of view. What he was, frankly, was one of the best poets working in the English language and THE best writer working in the United States bar none. That ain't hyperbole, Jack, That was pure fact. And I only limit it to the States because I figure I'd better give the rest of the world the benefit of the doubt. They might have slipped in somebody as good. I don't follow their stuff closely enough to be sure. Somebody as good, maybe. But nobody better.
More importantly to me, though, he was my brother. He shared not even so much blood with me as Wilson, but Mike was still my brother. I don't say things like that lightly. Maybe not blood of my blood, but bone of my bone, and a son and brother of this house. For thirty years he came to Charleston to spend Christmas with Harriet and me, and sometimes Thanksgiving and maybe Easter. He was coming home for Christmas again. We'd made plans.
Christ, I miss him.
Sorry, Mike. I know you'd have preferred some clever repartee and a quip or three, but my quipper seems to be busted.
Check out the "Making Light Hayden" website for more about John M. Ford's death and the legacy he left behind. Includes some commentary by Neil Gaiman and others.
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.
I spent the weekend with a man walking a tight rope holding a small parasol in one hand for balance while tipping his hat to the crowd far below with the other. I'm stealing the metaphor from Harriet for that was her description of the circus act RJ is performing trying to keep the medications in balance, do some work and keep you (fans) and we (family) informed.
Over the past two weeks the balance has been difficult to attain. Reining it in slowly, but surely however.
RJ, Harriet, Janet and I spent time on Saturday afternoon thumbing through your posts. All touched us, some to tears. Thank you for sharing your stories. You provide more inspiration than you'll ever know. Were I to possess but an ounce of the strength of Ben N, Don Webb, Julia or Lynn I could move mountains. RJ singled out several individual posts for a personal answer.
The four of us made it out on the town for dinner on Saturday night. Charleston is replete with fantastic places to dine. RJ knows that being land bound I prefer food from the sea on our visits. Picked a grand one he did, Coast. Highly recommended.
The BBQ chicken we had planned for Sunday evening had to be postponed. Too bleeping hot outside to stand by an open grill, and other things to do anyway. We'll try your many home recipes for sauce and rubs at a later date.
RJ and Harriet will be making their monthly trip to the Mayo next week.
He's working. Good therapy it is. Also gives him and his editor-in-chief, love of his life, first and only wife, Harriet something to talk about rather than the 800 pound medical gorilla sitting in the middle of the room. You'll hear from him soon.
Brother-Cousin, 4th of 3
Hi, guys. I apologize for it being so long since my last post, but I had a few little rough patches to deal with, and they kept getting in the way. You know how it is. Somehow, and you never quite do know how, you find yourself juggling three eggs when the doorbell rings. You want to put the eggs back in the basket so you can answer the door, but sure as anything, that's just when somebody with shoot another egg in on you, or even two, and you're juggling faster than ever. Well, we have all that under control now. Wilson has very kindly been keeping you abreast of events, so I won't bore you by going into details. Suffice it to say that I am recovering lost ground every day now. Tonight, Harriet and I are being taken out to a nice French restaurant by a young cousin, Mary Pinckney, who is more like a daughter to us. Next weekend, Wilson and Janet will come down, and we'll have some BBQ chicken. Though I can see the argument shaping up now. Harriet will want me to try making the BBQ sauce as nearly salt free as never no mind, while I think that cutting loose once in a while is my safety valve that allows me to eat restricted salt the rest of the time. I'll just have to triple the Tabasco in the sauce. That has a good bite and a good flavor. Sure, there are hotter sauces, but either they have a poor flavor or else the heat is so great they have no flavor at all. I'll stick with my Tabasco.
I see where Wilson posted the wolfman stuff. But he makes it sound like a joke. I actually find it quite restful lying in the flowerbed at the front of the house and leaping up when tourists walk by. The way they jump and squeal and set off running, well, I just lie there and laugh. Hwoooooooooooooo!
It is a couple of weeks yet before I go back to the Mayo for my second set of tests with respect to this study I'm in. I still don't expect any good news yet, not for another few months. Then we'll see. You can stand back and watch me dance.
Many thanks for their donations to the Hematologic Malignancies Program – Amyloidosis Research go to Kyla Fitzmartin,Cheryl Bush, Joanna E. Stampfel, Kristin J. Jesenko, John Smedley, Tony Ryterski, Vickie Spear and Anthony Graybosch. A million thanks, guys. Donations like your will help find a cure for this thing eventually.
For Jaime Platt and her sister, your offer touches me deeply. They were able to harvest enough of my own bone marrow stem cells that I don't need marrow donation from elsewhere, but thank you very much. That was a kind and generous offer.
For Emma, regarding Las Vegas, of course the woman wanted to know where your mother was. What I want to know is what does your mother mean by letting you go to Vegas without a chaperone?
For Joshua Young, man, with what you have in your own life, I can't imagine that you would waste two seconds on this bog. God be with you, Josh. You have my prayers.
For Jesse, George Martin and I know each other to the extent that we'll have a beer together when we run into one another, or dinner maybe. I like his books. His style is very different from mine, but I don't go around looking for people who write the way I do. Oh, yes. George is a good guy. I like him as well as his books.
For Alessandra, amyloidosis of my sort means a heart transplant is really out of the question. The amyloids would just start depositing in the new heart and eventually wreck it, too. I don't think I could even get approved for a transplant for that very reason. Anyway, I intend to beat this thing, not just dodge it.
For a number of people who have pointed out the advances made lately, especially in Australia with fighting the amyloids related to Alzheimer's, those amyloids are quite different in type and location from mine. Some of the work crosses over, and some does not. As to whether these discoveries will have any effect for me long-term, we'll just have to wait and see.
Mario Plateau asks how can we deal with death, and Anne asks whether I am afraid of death. You deal with death the way you deal with breathing, or with air. Death is a natural and inevitable end. We all come to it eventually. I'm not eager for death, certainly, and I intend to fight it, but neither am I afraid of death. I made my accommodations with death a long ago, when I was a young man. Face to face with it, however, I have discovered a fear that never occurred to me all those years ago. When I die, Harriet will be left to deal with the aftermath. God, I'd give anything to spare her that. If I needed a reason to fight, that would be reason enough by itself.
Take care, guys. More soon.
RJ has dropped a ton of water weight, over 30 pounds. He's feeling much better as a result. Earlier this week he and Harriet made one of their many trips to his doctors and were pleased that he was able to negotiate all of the walking without rest or assistance. You'll recall his description of his first attempt to mosey around the block with me a while back. We made it more than half way, and may have gone further save the sun getting to us both. Harriet reports that his appetite is also improving.
Their sense of humor never dims. We were chatting on Wednesday about both our hair growth. Harriet announced that RJ had hair "all over his head". He corrected that it was only growing down to his eyebrows. We laughed about having to learn the wolf man dance. RJ said that he was spending time lurking in the bushes in front of the house lunging at unsuspecting tourists. So should you be sight seeing in Charleston, you've been warned.
To SJP, Elseby, Ray and Damien: Thanks for your service guys. Be safe.
To Kristen: Lost it, but you kept on fishing, atta girl! Ask RJ about the day we spent fishing with my cousin, his then 9 year old nephew and were both skunked. As I recall the score was Jim III three pretty good sized sharks, RJ and Wilson zero.
I know there is trifling little news in this update. But find comfort in the fact that things are still very positive. Your continued support is very important. RJ and Harriet are weary from the fight and have much more ahead. Your words of encouragement, advise, humor and well wishing help lighten their load. Thank you all.
Brother-Cousin, 4th of 3
The dynamic duo has returned from the Mayo with mostly good, but certainly mixed results. Amyloidal deposits are measured as monoclonal free light chain fragments. There are "good and bad" light chains. The good news is that the ratio of good to bad has definitely improved. The mixed news is that both numbers were up. We are ecstatic that the news is positive, but would have liked the offending Lambda light chains to have stayed level or decreased in number. Overall though guys, this is very good news.
The computer has been relocated from the office to the house and RJ was working, some. Not right now though guys. In preparation for the trip, the docs pulled him off of Lasix, a diuretic, which resulted in a gain of almost 12 pounds in three days. At the Mayo, he went back on the Lasix and dropped 5 pounds in 2 days. Then the Lasix was stopped for the trip back home and a gain of 7 pounds was achieved. Through it all, RJ figures he has about 20 to 25 pounds of excess water on him at the moment. The extra weight was causing the difficulty in sleeping he described to you before. Result: the docs have him back on the Lasix to get rid of the water weight and have enforced strict rest. Sorry, no writing, not even on the blog at the moment. He is reading your posts however.
He hit me with something on the phone today that I never knew about. Like many soldiers, he had a nickname while serving in Vietnam. RJ overheard a group discussing something and one said they should ask Ganesh what to do. He walked into the discussion and asked who this Ganesh was. "You.", they told him. You see, RJ was considered a good luck charm by those he served with. He and the crews he served with always made it back. It got to where pilots would ask for him by name for their crew. Ganesh is the Hindu Lord of Good Fortune. RJ referred to Ganesh as the Remover of Obstacles. To this day, he has no idea who gave him the name. I still consider him my good luck charm. Heck, he brought Harriet into my life. A man can't get any luckier than that. Truth be known, both of us married above our station. Bitter truth guys, we all do.
To Sue fighting the same menace, prayers go both ways. Stay the course.
To Johannes in Sweden, when RJ recovers and revisits your beautiful country, hopefully you'll get the chance to chat with him about both his worlds.
To Jennifer Sedai, Harriet is all you said and more. Elegant, intelligent, a worker not a watcher, interesting and interested, a friend to all, a hell of a cook, a gardener extraordinaire, unpretentious, the defender and provider of those in need, tough, tender and above all, REAL. My life is better for having her in it. Know I'm not speaking out of turn, RJ's is too.
To all of you who've asked me to pass on your love to them both, done and will continue. Please don't stop. Long live the Dragon and his Queen!
Brother-Cousin, 4th of 3
I know. Not who you wanted to hear from. The Big Guy asked me to update you in his absence.
I just got off the phone with Harriet and RJ, as they were passing through the Atlanta airport en route to the Mayo Clinic. They fly into Minneapolis and will drive the 90 miles to the Mayo this afternoon. Harriet is taking on the driving duties. Love her like a sister, but don't get in her way. She drives by the dictum: lead, follow or get the hell out of the way. Upon arrival, they'll hunker down for the evening. RJ mentioned having "Take Out Taxi" deliver Szechwan for dinner. Their evening will consist of reading and rest from the trip. RJ will undergo another round of medical tests and consult with the doctors. On Saturday they'll return home. Thirty days from now, it'll be the same routine.
RJ is recovering still from the effects of the chemo. As an example, six weeks ago he gave me the green light to regrow my hair. I've pretty much returned to normal, though my coworkers would argue that, while his hair is very short and as fine as a newborn's. He did tell me today that I would be able to see his hair from a few feet away, a vast improvement. Additionally, RJ is on a pharmaceutical regime that would bring lesser persons to their knees. I'm personally amazed at how well my brother-cousin is doing, but he is still weaker than he would like. That said, the record heat we've had this summer has really gotten to him. His office is a short walk from the back door of their home. Stepping from the air-conditioned house to the heat and then back into the air-conditioned office was taking its toll. As a result, the office computer is being relocated into the house. It will take a little time to make the transition and get the network up and running properly. I'm sure you'll hear from him shortly after that's completed.
We lost round one. The chemo didn't work and the strength hasn't returned as quickly as he'd hoped. Round two is underway, and as he's told you himself, he intends to win. This very day, he told me how fortunate he was. Facing what he's facing and he feels fortunate. Take something from that guys and allot time to be thankful for your own blessings. Do keep the prayers and well wishes coming. He still needs them. While you're at it, toss in a couple for yourselves.
Brother-cousin, 4th of 3
Well, guys, it turns out that the possible good news was only a chimera after all. The chemo did not work. I am still producing amyloids. Oh, well. I knew going in that I had only a 60% chance of a good result. I guess sometimes even my luck doesn't stretch far enough. The silver lining in that is that the disease is stable. There has been no further damage to my heart from three months ago. There is that.
On the good news front, I snagged the last of 38 slots in a study to see whether a drug recently (last month!) approved for treatment of multiple myeloma will work on amyloidosis. Treatments that work with multiple myeloma usually work well with primary amyloidosis, and Dr. Hayman has high hopes for this. It is in the same family as thalidomide, but much less toxic and with far less severe side effects. I'll take a pill a day for 21 days, lay off for 7 days, then go up to Rochester for a day, where they will do tests and give me my next month's supply. We don't expect to see any result in the first three months, but after 3 months of this regime, I will transfer to visiting the Mayo for a day every 3 months, adding a steroid at some point. I've been on this particular steroid before, short term. I had someone remove all the firearms from my house and study before I got home the first time I was put on this stuff, but the only side effect was a touch of euphoria. Harriet says I was very, very happy while taking it. So I guess I'll be grinning a lot. God, I hate people who smile all the time! Now it looks as if I might become one. Jeez Marie!
It's funny. If I hadn't been stubborn, I might not have made it into this study. You see, the time for 100-day checkup was supposed to be the beginning of August, but I said I couldn't do it then. (They aren't used to hearing that at the Mayo.) That is when I'm taking Harriet to that spa hotel for her birthday, and I wouldn't miss it. So by the time we had gotten around working back and around Dr. Hayman's vacation, it turned into an 80-day checkup and I was there for that last spot. Had I waited to go until August, that spot almost certainly would have been taken by someone else. You see? It pays to be good to your wife.
Getting into the study was good in another way, too. Since the drug hasn't been approved for amyloidosis, even if I could have gotten Dr. Hayman to write a prescription for me, my insurance wouldn't have paid a penny on it. And it costs $18,000. A month. In the study, I get it for free. If it gets approved, then I'll have to pay, but my insurance should pick up part of it. Though I have heard of $4,000 and $5,000 co-pays with this same drug. Oh, well. What you gains on the swings, you loses on the roundabouts.
Okay; enough of that.
I'd like to thank Mr. Dennis Fallon and Mr. Ulrich Santo for making contributions to the Mayo Clinic Hematologic Malignancies Program -- Amyloidosis Research. Thanks a bunch, guys. I really appreciate it.
For Teri, the dolphin I wrote about is a fish, not a mammal. In Latin America it is called dorado, while in Hawaii (and in restaurants) it's called mahi-mahi. Just so nobody will think they're serving Flipper. Terribly wasteful creatures, dolphins. The mammals, I mean. Many times I've seen a dolphin herd redfish or sea trout into shallow water, then, with a swoop of the tail, send the lot of them up onto a mud flat. The dolphin will then semi-beach itself, eat what it wants, and swim off leaving the rest of the fish, the majority of them, lying on the mud. Intelligent? Maybe. But not ecologically minded. Not at all.
For Lisa, Harriet and I have visited the U.K. a number of times, both for my English publisher, to do signings in addition to adding on a little site-seeing, and on our own hook. We like it a great deal.
For several people who've asked about a possible U.K. tour, or one in Ireland, you'll have to pester Time Warner (UK), my British publisher. I have toured for them, in England, Scotland and Ireland, but it happens because they want it to, not because I suggest it. I've heard rumors that I don't tour in the U.K. because I don't like to fly. That isn't true. I have so many frequent flier miles, I'll never have to buy another airline ticket once I get old.
For Richard Scholten, I have never discussed anything whatsoever with Terry Goodkind. I suggest that you check the publication dates of his books and mine. Of course, he says he has never read me, or so I'm told, and I would never contradict a statement like that. Just check out the pub dates on his books, and the pub dates on mine, those that contain the similarities you speak of.
By the way, I've seen posts various places suggesting that I've had Trollocs using gateways in previous books. I think this stems from the attack on the Stone of Tear where I speak of Trollocs and Myrddraal "leaping out of thin air." This was not meant to convey gateways -- no openings in the air were mentioned -- but rather the suddenness of their appearance. A cliche, I know. Later, in SR I think, I explained that they had been smuggled into the Stone using barges and wagons.
For Deadsy, I have occasionally played AT tennis, but I don't play the game. My knees don't hold up well under lateral motion any more. And as for Tori Amos, to the best of my knowledge I've never listened to anything by her.
For a fan of rolan_dcs, no characters in my books are based on any real people, living or dead. With the possible exception of myself, anyway. And the bits I took from Harriet for various female characters.
By the by, I've seen a lot of comment, apparently from men, that my female characters are unrealistic. That's because women are, for the most part, consummate actresses who allow men to see exactly what they intend men to see. Get behind the veil sometimes, boys, and your hair will turn white. I've been there, and mine went white and didn't stop there; a great deal of it actually turned dark again, the shock to my system was so great. Believe me, I mild it down so as not to scare any males into mental breakdowns.
For lilltempest, Perrin's agreement was only that he would not attempt to reestablish Manetheren. His later statements regarding Ghealdan being under his protection make it pretty clear that he doesn't mean to roll over for anybody.
For NaClH2O, your family put vegetables IN the Hoppin' John? I mean, not just black-eye peas , but veggies in the rice? Collards as a side dish are traditional, to be sure, but not IN the rice, man. I begin to think that the family history you relate is a legend, as they say in tradecraft. Plainly you are a first generation immigrant from Pakistan or Chicago or someplace like that. Veggies AND black-eye peas! Good God Almighty!
I don't know where the name came from, but I can tell you why it is considered lucky to eat it on New Years Day, especially with some benne wafers for dessert. In Charleston we add something with benne seeds, anyway. Hoppin' John and collards originally were slave food, you know. Slaves, at least here in South Carolina, were allowed to keep their own kitchen gardens, and their own pigs and chickens. Now COWPEAS and rice (but NOT black-eye pears and rice) together form a complete protein. Add in smoked pork, collards, and anything containing benne seeds (benne is a West African word for sesame, an excellent source of oils), and you have a very healthy diet. Now if I were a slave, I think I'd consider myself pretty luck to have a good, healthy diet. Most Southern country food comes from the African-American tradition, sometimes touched with Acadian (Cajun), and I suppose a good many of the folk beliefs shifted over, too.
For those who think I have adapted some name or other from another novel or series of novels, I have not. The names come from my head, from mythology and legend, from history, from the foreign news, often with a twist I give them to make them less a reflection of reality or less familiar. But never from anyone else's novels. Never.
For Dave, who wants to know what Infinity of Heaven means, thanks for asking the question. I've been thinking I'd never be able to post this. RAFO.
For several people, a LONG way back, regarding my statements about good versus evil. I wasn't claiming a total monopoly for fantasy. Andrew Vachs certainly writes about a good vs evil environment, for example, yet Burke, his main character, blurs many of the distinctions. For Burke there is one real evil above all others -- the abuse, especially the sexual abuse, of a child. And so say all of us. Anyone I'm willing to drink with, anyway. But remember Wesley, Burke's compadre, that stone killer who finally killed himself, if he actually did die, by blowing himself up along with a school full of children. Burke himself has stepped over any other moral lines often enough that only that one remains for him. Well, I think he would balk at rape, and loyalty to his self-adopted family is paramount to him. But nothing else would faze him in the slightest. That blurring, that acceptance of blurring, is widespread.
I certainly did not maintain that my characters always have proceeded, or will always proceed, from the perceived correct action according even to their own beliefs of right and wrong, good and evil. People have a tendency to make excuses for themselves in what they see as special circumstances. It happens.
The "realism" that I mock -- and I will mock it -- is that of writers who, in the final result, say, for example that there is no moral difference between the men who flew their airplanes into the Twin Towers and the men who hunt down terrorists. For those who think there are none such, I direct you to comments concerning the Speilberg movie "Munich." I have not seen the film myself and cannot comment on it, but both reviewers who seem to love the film and those who seem to hate it speak of the "equivalence" that Speilberg established between the men who carried out the murders of Israeli athletes at the Munich Olympics and the Israeli agents who later hunted them down and killed them. They are all supposed to be the same. Like hell, they are!
I'd better get off this topic. Next I'll be going after fool college professors who call the dead in the Towers "little Eichmans" and the fool professors and actors who seem to think September 11 was all a plot of the US government. Does Charlie Sheen have ANY brain cells?
For Deadsy again, who suggests that I have an e-Bay auction for something to put in one of my books, a curse word or the like, I already put up naming rights in an auction for a British organization that works with victims of torture. The woman who won asked that a character be named after her husband. Thus, after some checking back and forth, Charles Guybon Hudson became Charlz Guybon in KoD. The description used in the book is based on the description of the real man. I think NaClH2O already pointed this all out, though. And DomA, I think.
Somebody -- I can't remember who; it's a long way back -- called my recipe for quick-and-dirty okra gumbo atrocious, or some such words. Harsher, I believe. I agree with him, from a purist's standpoint. I much prefer the slow simmered version that takes half a day to get right. I just don't always have half a day, and sometimes I am willing to settle for an approximation when I can't get the real thing. A point to consider. When I make a pot of this, I always think of how often I can have lunch from it, but I never get to finish it myself. Everybody in sight lines up with their bowls as soon as they know I'm making it. Might tell you something, don't you think?
I have to apologize, I fear, for my comments regarding file (pronounced fee-lay; I can't put the accent in) and shrimp in gumbo. I happened to check Charleston Receipts, the wellspring of Charleston recipes, and among roughly half a dozen or so recipes for gumbo I found two that called for the use of dried sassafras leaf (file, to those of you who don't know), and one that called for shrimp, oysters, crab AND fish. At least I can say that New Oleanois are pikers when it comes to stuffing seafood into gumbo.
That's about it for now, guys. Liston took the first round on points, but the bell has rung for the second round. I just have to keep my hands up, keep the left jabbing, use the right to work the head and the short ribs. I am going to take this sucker down. You can bet on it.
Talk to you again soon.
As usual, let me start by thanking those who recently have donated to the Mayo Clinic Hematologic Malignancies Program -- Amyloidosis Research in my name. The latest are Ms Brandie Minchew and Mr. Liam Hemmings. Thanks a million, guys.
This will be short, just to keep the worriers a little less worried about any untoward events.
A note to those sending me fan mail. A return address really helps if you'd like any sort of answer, though I've been reduced to postcards of late because of sheer volume. This holds especially true for people writing from Japan.
My cousin Wilson and his wife Janet came down to spend last weekend with us, and that was great. Wilson and I took a little walk, and I made it almost halfway around the block before I had to stop. A small thing, but a new best, post-chemo. I've also pushed, with my trainer's guidance, the weight lifting to 35-lb dumbbells for the bench press and 75-lbs for lat pull-downs. Not great weights, to be sure, but a lot more than I was able to handle only two weeks ago. I get a little better every day, it seems, and those little bits add up over time. I'm still about 30 pounds lighter than I was on tour last year, but I've started putting weight back on. In muscle, I hope, not fat. But several people have commented that the shoulders, biceps and forearms are noticeably larger than they were three weeks ago, so maybe I'm doing it right. And I'm getting a little work done on AMOL, which is good. Not that any of you care about that.
Tomorrow Harriet and I take off for the Mayo Clinic, where we hope to get confirmation of that "good news, maybe." (See the earlier posting for a fuller explanation.) If they come through for me, I'll be popping the bubbly as soon as we get home. And letting you know, of course. Our return home won't be until next Thursday, possibly later if I get a Corporate Angels flight back, so don't get antsy if I don't post until a week Friday. Until then, wish me luck and keep those prayers coming.
And just to toss in a few answers.
For Emma, I'm not sure what sort of spa hotel you mean, but at this one, the list of possible massages alone runs to half a dozen pages. They also offer a lot of "scrubs," "wraps" and other things that seem more attractive to Harriet than to me. Plus, it's on the beach. Does that sound like what you're thinking about?
For Tony W, the last book of the main story arc, A Memory of Light, won't be the last Wheel of Time novel. True, I want to move on to the Infinity of Heaven books, not to mention some other books, but there are two more prequel novels to come, and maybe a set of three outrigger novels.
Somebody a while back wanted to know whether I had ever received any awards. I was given a Straniak for the Wheel of Time by the Congress of Russian Science Fiction Writers, and some years back my French publisher informed me that I had been nominated for a prize, but at this late date I forget which one. Aside from that, I've never received or been nominated for any other awards.
For Kristin, who wanted to know what sort of fish I fish for, it depends on the time of year and what's biting, really. We can go off-shore and fish for blue marlin, sailfish, king mackerel, dolphin, swordfish, albacore, and several kinds of tuna, including occasionally one of the giant blues, or stay inshore and go after tarpon, redfish, jack crevalle, or sea trout (weakfish, technically, not steelhead) and if nothing else is biting, ladyfish, which is called the poor man's tarpon. They are fairly small -- I think the world record is around five pounds -- but they make spectacular leaps and runs and are very good sport on ultralight tackle. There are many other inshore fish, of course, ranging from croaker to hammerheads, but I don't fish for them, just as I don't fish for barracuda. They're something you catch by accident.
An old one, for Perrab, I believe. No, the pipe smoking had nothing to with the amyloidosis. So far this year I've had four chest X-rays and two helical CAT scans of my chest. I understand that the Mayo is in talks with Switzerland about licensing them my film as an ad for the clean air of the Alps. I hope the rumors are false, because that would be wrong. Besides, I should get a cut.
Well, that's enough of that.
Take care, guys. Talk to you soon.
I thought I'd send a few words just to keep any rumors at bay, and any worries over the length of time since my last post.
First off my thanks to Mrs. Sandy Allen and to Dr. Mark H. McKinney of The Citadel Electrical & Engineering Department for their contributions in my name to the Mayo Clinic Hematologic Malignancies Program -- Amyloidosis Research. Your gifts are very much appreciated.
Thanks also, once again, to all of you who have posted your well wishes for me. It means a lot. More than I can say.
As for me, I am still doing a little better each day. The work on the elevator is done, so I can sleep in my own bed again, which is terrific. I still do poorly with stairs and with walking very far. My current goal is to make it around the block without stopping to catch my breath even once. And to do so at a decent pace. I truly hate the creeping sort of walk I've been reduced to lately. I know that, too, is getting better, but it is still irritating.
I've begun working out again, but on doctor's orders, with very light weights. 10-lb and 20-lb dumb-bells, with 40 lbs for pull-downs. It still surprises me how much I feel a session with such light weights, but then, I am almost forty pounds lighter than I was on tour, for those who saw me then. Harriet says I am skin and bone, and in some ways she has the truth of it. I haven't been this light since I was a sophomore in high school. I am finding sessions on the stationary bicycle exhausting.
I am persevering, however. And trying to get back into the work, I'm sure you'll be happy to hear, though at nowhere near a full schedule yet. Besides, I have asked my brothers and cousins to come to Charleston in August to fish, plus I promised Harriet to take her to a spa hotel for her birthday that month, so I need to build up my strength as quickly as I can.
I can't recall whether I mentioned this earlier, but we got to the bottom of me sleeping 20 hours a day. One of my medications, for nausea, also had drowsiness as a side-effect. And, boy, did it make me drowsy. Getting rid of that -- no problem since I never did have any problems with nausea -- got rid of the desire for so much sleep.
Now it is just a matter of waiting until July so the Mayo can tell me whether those tests were right. And more importantly, what they really mean. Whatever the report, though, you should know that I'm still here kicking. And writing when I can.
Talk to you later, guys.
First off, guys, I want to thank Lewis Nemes for making a donation to the Mayo Clinic Hematologic Malignancies Program -- Amyloidosis Research. Thanks much!
Now. I got some news last week, and I am holding at about a 97% confidence level that it is about as good as it can get for me. A recent blood test looking for lambda light chains (an indication of amyloid production) showed a normal ratio, and if that is right, it means a complete hematologic response, a total stoppage of amyloid production. We won't know for sure until I get tested again at the Mayo Clinic, where they have much more sensitive tests. That will happen in mid-July. If this information is right, though, I just jumped from a median life expectancy of one year to a median expectancy of six years. And that will be terrific news! It will mean that my heart has a chance to begin healing to whatever extent it can. It just doesn't get any better than that. I already have a bottle of bubbly in the icebox awaiting confirmation.
Well, take care, guys. I just wanted to share the (tentative) good news.
Talk to you again soon.
Harriet and RJ have asked me to publish these quick thank you's:
Dear Chris Lim, thank you very much for your gift in my honor to the Hematologic Malignancies Program -- amyloidosis research. It is a great compliment to me and I am very grateful to you. Sincerely, Robert Jordan
Another dear person has sent a gift to Mayo. Please post Jim's thank-you to Mr. John Smedley.
Dear John Knam, Greg Pearson, Michael Kemp, William Walker, Carlos Franco, and Jenna Medaris: Thank you very much for your kind gifts to the Hematologic malignancies Program -- Amyloidosis research at Mayo. I am honored and touched by all your gifts. Sincerely, Robert Jordan
P.S. If I have already thanked you, forgive the redundancy. Things got a little hectic there. Best, RJ
Thank you from the bottom of my heart to Bob Mimlitch and to Richard Zoppo, both of whom have sent gifts to the Mayo Hematologic Malignancies Program -- amyloidosis research, in my honor.
You touch me very deeply. Thank you again. Robert Jordan.
Robert Jordan asked me to pass along some more photos. Here they are, and here's what he had to say about them:
Here are a few more pictures for you to post. First off, my niece Ariel. She didn't have her head, obviously, but what she did was neater, really. There is a charity called Locks for Love [
] to which women can donate their hair if they have at least 10 inches that can be cut. This hair is then made into wigs for women and girls undergoing chemo. A righteous move on her part. (These are before and after, of course.)
Then there is my brother, Reynolds, who shaved as per promise, followed by one of me and my nephew Rey, a New Orleans Police Officer, who also shaved as per promise. And finally, for those who really do want to gaze at my bone structure -- there are sickos and liars all over the place -- a last pair of me sans hair.
Click each image to see a larger version.
RJ sent us a close-up photo of his dragon do-rag. It was a bit hard to see in the previous blog entries. Click the pictures below for a larger image. If you're not sure what this is all about, see his previous blog entries.
I don't think I've ever broken a promise to you guys before, but I must this time. I won't be in Seattle or Anchorage as promised. Harriet finally allowed as how she was just too tired to make the trip, and I guess that freed me up to take a long look at myself. I can see where I am right now, and for all the brave talk, the chances of me actually making it to Anchorage were somewhere between small and nill. Especially if I expected to walk away at the end instead of being carried. So we aren't going to be there.
My apologies. Mia culpa, mia culpa, mia maxima culpa. Sometimes you just can't deliver. Still, I can't help thinking that getting more back on my feet by the end of June is a better plan.
I am likely to curb my blog posts a bit, too, so don't go worrying over that. They'll be shorter, likely further between for a time, but I'm just trying to get a little rest, that's all. Don't sweat it.
All my best,
First of all, Major thanks from both of us to Dustin Micheletti, Greg Pearson, Michael Kemp, William Walker, Carols Franco, Jenna Medaris, and John Knam, for your very kind gifts to the Hematologic Malignancies Program -- amyloidosis research. Thank you for joining this fight!
Now I must add my own personal and heartfelt thanks to Brad Condray, Proxy Candy Striper for all of wotmania, and all of you dear Wotmaniacs, for your lavish, heartfelt, and delightful Care package. Your card of good wishes moved me to tears. And the box contained so many smiles, good tastes, and fun pastimes that I was overwhelmed.
Thank you very much, all of you.
Some of you don't like my striped shirt, and some don't like the braces but you'll have to get used to both, boys and girls; I like stripes, this simple red-and-white isn't even close to one of the full-bore stripes. With French cuffs. As for the braces, I adopted those some 20 years ago. A tailor in London was marking up the waist of a pair of trousers when I commented on the fact that I had trouble with trousers sliding down...and off "Sir has no shelf," he replied, and I realized he was right. I have very little behind. Hence the braces. Though I will admit that I have to go get these trousers taken up. When I bought them, I weighed approximately 30 pounds more than I do now.
I am sleeping about 20 hours a day, and feeling ready to go back to sleep as soon as I wake, but I feel good enough to try bringing you all up to speed on how things have gone. Some of this will be repeat work, so bear with me. Those who've been there can consider it a recap with maybe a little extra that wasn't there before. No jokes in here, or not very many. Just the straight ski-nay.
The first symptoms I am aware of occurred last Memorial Day. I was on my way to a charity fund raiser when I suddenly felt light-headed. I was afraid that if I did not stop, I would fall over, but since I was crossing an asphalt parking lot and didn't want to fall on the hot asphalt, I decided to keep going until I reached the grass on the other side of the street. I got there, but along the way, buildings began to glow white and everyone I could see acquired a nimbus. I made it inside, paid our entry fee (total elapsed time about 1 minute) and sat down for a while until I could join the festivities. A weird occurrence, but I paid it no further attention.
Exactly one week later I was in the lobby of the theater showing Spamalot, five minutes to curtain. I went light-headed, and then I went blind. This lasted for about 3 to 5 seconds. [The blindness has not reoccurred, but I have not driven since. Three seconds of blindness at 80 is nothing I want to fool around with.] A lot of people (exclusively women) have asked why I didn't go to the ER. The men I have talked to, including every male doctor, has understood. On the one hand, a night waiting in an ER and on the other, five minutes to curtain for Spamalot, original cast. A no brainer.
Still, on getting home, I went to my doctor, and she set up a full neurological work-up, a full cardio work-up, a full pulmonary work-up, everything she could think of. I aced them all. The techs started frisking me on the possibility that I was sneaking in a ringer. No ringer, but golden test scores.
Then I went on tour for Knife of Dreams. I came home expecting to be five or six pounds up from where I started (3 meals a day in restaurants for five weeks), but I was nine pounds up. My cardio man put me in a Halter Monitor, which you wear 24 hours a day and which records pulse rate, blood pressure, and a mini-EKG. This showed that I had an irregular heart-beat with roughly 1.5 second gaps plus low blood pressure. When low blood pressure combined with a downward spike in the BP, the result was light-headedness.
The doctor told me to load salt, and it was a good thing that he did. First off, I put on 15 pounds in 2 weeks. Then I had an episode of light-headedness while seated, which had never happened before. Harriet insisted on calling the doctor, who said to meet him at the University Hospital immediately. I was check in with what turned out to be congestive heart failure, a buildup of fluid around the heart. Once I was put on lasix, I lost 35 pounds in ten days. I also was seen by Doctor Zile, the head of the cardio department, because my cardio man had just gone on vacation. It turned out that he was med-school buddies with a man named Gertz, who is the #1 man in the world on amyloids. The result of that was that I was tested for amyloids (bingo!) and aimed at the Mayo Clinic.
Now, we're going to skip over a few things in here -- my first mini-dose of chemo, two hospitalizations with dehydration, fever and chills so bad that it was taking me three or four attempts to grasp my reading glasses, etc. The reason I've taken you step by step this far is that I got my first symptoms in May, my first diagnosis in December, and a confirmation of that diagnosis in January. That isn't just fast, in the world of amyloidosis, it is blindingly fast. Many people take 3, 4, 5 or even 6 years to get to that diagnosis. I intend to start a small foundation aimed at educating GPs primarily. At the Mayo, they say that by the time they get an amyloidosis patient, said patient has been beaten up within an inch of his or her life. It shouldn't be that way. I got lucky, but it shouldn't depend on luck.
Okay. Back to the rendition.
After roughly a week of testing to see whether I was a viable candidate, they decided that I was. Then I began bone marrow stem cell collection. I was able to collect 9 million ml/kilogram of body mass, which I though was very low. They will do a transplant with a few as 3 million per kg body mass, but they don't like going below 4, and they will not, can not, go below 2. I had been hoping to hit at least 12 million and preferably 16 million or even 20. Not until it was over did they tell me that people with amyloidosis often have trouble harvesting 4 million, and some can't make the 2 million.
After this came two days of chemo. The drug used is melphalan. The old fashioned name is mustard gas. Yeah; same-same World War I. On each of those two days they give you just short of a lethal dose of mustard gas. There is nothing haphazard about this. They calculate exactly what it will take to kill you and stop just short of it.
This is the point where I got my hair cut the first time. You see, movies notwithstanding, if your hair does fall out, it comes in chunks and patches, not smooth sheets. I figured I'd keep control of what I could keep control of and had the barber do me with a razor.
On the third day, called Day 0, you get back some bone marrow stem cells. Your appetite has already gone away by this time, but you haven't really noticed it because you've been hooked up to an aphaeresis machine for stripping out the stem cells. If you were a non-amyloid patient, they would give you more injections of growth factor, they same stuff they gave you to make you produce extra stem cells in the first places. Not if you are an amyloidosis patient, in which case the growth factor can make you put on 30 to 40 pounds of fluid in a day, in which case you are hauled off for congestive heart failure. This while your blood numbers (white blood cell counts, platelet counts, red blood cell counts etc) are headed through the floor. Not a good thing, as they say.
I've said that your appetite goes away during this, but this isn't a matter of just hunting for what you'd really like to eat. You don't want to eat anything. Nothing. Your favorite food? Forget it. You try to force something down, try to get some calories down. Protein powder, whatever, you choke it down. Only it still isn't enough.
I went to the Mayo weighing 240 pounds, and that was 6 pounds lower than my trainer and I had established as my dry bottom weight. This morning I weighed 217 for the second morning running, and I am ecstatic. I didn't loose anything.
I'm very grateful to those of you who sent Harriet a care package. More grateful than I can say. She showed it around, laughing sometimes. And sometimes crying. You see, she's still afraid she could loose me. We won't know whether any of the treatment did any good for at least six months, and probably not for a year. Until then, we hang on and fight. Her as much as me. She's my whole corner team, cut man and all. Leaving the Mayo wasn't the bell to end the fight. That was the end of Round Five, and Liston made it a nasty one. (I've alluded to it earlier, and I'll let it go at that,) But I beat him back, got inside his rhythm by the end of the round. Is he ahead on points? Am I? I don't know. I just know we're fighting by the old rules. None of this 12 round kiddy stuff.
"Welcome to the Garden, Ladies and Gentlemen, for at least fifteen rounds of cham-pi-on-ship boxing. By prior agreement, this fight cannot end in a draw. The match will continue until one opponent either cannot come out of his corner to answer the bell or cannot answer to the mark by the count of ten."
(And we got one of Marciano's old refs, so don't worry it's going to be stopped on cuts. This guy figures if you step into the ring, you expect to bleed.)
Anyway. The pictures are not for life-style options. When I can grow the hair back, I will. The goatee may stay, but not the shaved head. The tattoo, maybe. The Harley? Oh, yeah, I'm pretty serious about that. Harriet seems to leaning to riding postillion.
Well, that about wraps it up for now. I'll be back to you in a few days.
Take care, guys.
All my best,
Dragonmount.com is a fan-maintained website dedicated to Robert Jordan's Wheel of Time fantasy series. It is an online community of people from all over the world who have come here to experience the series to the fullest.