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2012-04-30: I had the great pleasure of speaking with Harriet McDougal Rigney about her life. She's an amazing talent and person and it will take you less than an hour to agree.
2012-04-24: Some thoughts I had during JordanCon4 and the upcoming conclusion of "The Wheel of Time."
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I have been diagnosed with amyloidosis. That is a rare blood disease which affects only 8 people out of a million each year, and those 8 per million are divided among 22 distinct forms of amyloidosis. They are distinct enough that while some have no treatment at all, for the others, the treatment that works on one will have no effect whatsoever on any of the rest. An amyloid is a misshapen or misfolded protein that can be produced by various parts of the body and which may deposit in other parts of the body (nerves or organs) with varying effects. (As a small oddity, amyloids are associated with a wide list of diseases ranging from carpal tunnel syndrome to Alzheimer's. There's no current evidence of cause and effect, and none of these is considered any form of amyloidosis, but the amyloids are always there. So it is entirely possible that research on amyloids may one day lead to cures for Alzheimer's and the Lord knows what else. I've offered to be a literary poster boy for the Mayo Amyloidosis Program, and the May PR Department, at least, seems very interested. Plus, I've discovered a number of fans in various positions at the clinic, so maybe they'll help out.)
Now in my case, what I have is primary amyloidosis with cardiomyapathy. That means that some (only about 5% at present) of my bone marrow is producing amyloids which are depositing in the wall of my heart, causing it to thicken and stiffen. Untreated, it would eventually make my heart unable to function any longer and I would have a median life expectancy of one year from diagnosis. Fortunately, I am set up for treatment, which expands my median life expectancy to four years. This does NOT mean I have four years to live. For those who've forgotten their freshman or pre-freshman (high school or junior high) math, a median means half the numbers fall above that value and half fall below. It is NOT an average.
In any case, I intend to live considerably longer than that. Everybody knows or has heard of someone who was told they had five years to live, only that was twenty years ago and here they guy is, still around and kicking. I mean to beat him. I sat down and figured out how long it would take me to write all of the books I currently have in mind, without adding anything new and without trying rush anything. The figure I came up with was thirty years. Now, I'm fifty-seven, so anyone my age hoping for another thirty years is asking for a fair bit, but I don't care. That is my minimum goal. I am going to finish those books, all of them, and that is that.
My treatment starts in about 2 weeks at the Mayo Clinic in Rochester, Minnesota, where they have seen and treated more cases like mine than anywhere else in the US. Basically, it boils down to this. They will harvest a good quantity of my bone marrow stem cells from my blood. These aren't the stem cells that have Bush and Cheney in a swivet; they can only grow into bone marrow, and only into my bone marrow at that. Then will follow two days of intense chemotherapy to kill off all of my bone marrow, since there is no way at present to target just the misbehaving 5%. Once this is done, they will re-implant my bmsc to begin rebuilding my bone marrow and immune system, which will of course go south with the bone marrow. Depending on how long it takes me to recuperate sufficiently, 6 to 8 weeks after checking in, I can come home. I will have a fifty-fifty chance of some good result (25% chance of remission; 25% chance of some reduction in amyloid production), a 35-40% chance of no result, and a 10-15% chance of fatality. Believe me, that's a Hell of a lot better than staring down the barrel of a one-year median. If I get less than full remission, my doctor already, she says, has several therapies in mind, though I suspect we will heading into experimental territory. If that is where this takes me, however, so be it. I have thirty more years worth of books to write even if I can keep from thinking of any more, and I don't intend to let this thing get in my way.
Jim Rigney/Robert Jordan
Well, guys, the letter in Locus is indeed from me. I had hoped to be a little more focused with this and get a post up here before anything came out in Locus, or anywhere else public, so you would get it first, but I flat forgot that Charles has his on-line version of Locus now, too. Sorry about that.
Don't get too upset, guys. Worse comes to worst, I will finish A Memory of Light, so the main story arc, at least, will be completed. And frankly, as I said, I intend to beat this thing. Anything can be beaten with the right attitude, and my attitude is, I have too many books to write yet for me to just lie down. Don't have time for it. Besides, I promised Harriet I'd be around for our 50th, and that means another 25 years from this month right there. Can't break a promise to Harriet, now can I?
I had intended to go on with a few answers to questions when I made this post (I see some interesting ones), but that will have to wait, I'm afraid. I have a few other things to get done first. Maybe I'll be able to get that up this afternoon or tomorrow. No promises, though. Before I go to Mayo, though, I promise. And updates from the Mayo as I can manage.
Oh, yes. When the hair goes, with the chemo—as it is very likely to do—I'll post some before and after shots, just so people showing up in Seattle and Anchorage won't think we've run in a ringer. Yes, I plan to keeping those signings in late June. The chemo and recuperation should be finished by mid-to-late May, so I can make it. Hey, there will be big salmon running in Alaska at that time, and I never passed up a chance at big fish in my life.
Again, sorry that you got the news in such a raggedy fashion. I really did mean to handle things more smoothly.
Take care, guys. Until the next time.
All my best,
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.amyloidos...ry.asp?story=32 [broken link]
Amyloidosis offers very peculiar symptoms, and very peculiar responses to treatment.
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,
A running commentary on the Mayo Clinic. I had intended to post before this, but it didn't work out. This began life as bits and pieces and notes I intended to use. It turned into something a little different. Sorry about that. I hope it's coherent.
The first week has been interesting. If you find needles interesting. There have been other sorts of tests—X-rays literally of every bone in my body; a pulmonary function test with me coughing all over the place and the tech sighing and saying "Well, let's try again then;" vast collections of urine—but mainly it has been the needles. I've been pursued by people with needles from dawn until sunset at the least. Sometimes they don't hold to those limits. At one point I was sent back to a particular station because the phlebotomist had drawn only a quart and not the quart and a half that had been in the orders. God's truth. I swear. Still, they say I seem to be healthy. For somebody in my condition, anyway.
I've gotten two bits of outstanding news. As of two months ago, my heart wall had thickened to 17mm rather than the normal 10-13 mm. On one side that has now shrunk to 14 mm. This is unheard of and has evoked murmurs of measuring errors, which I don't see Mayo making. The other bit isn't open to any arguments. The ejection fraction is the percentage of the blood in the heart which is ejected each time the heart contracts. Normal is 50%-65%. Two months ago mine was 48%. It is now 67%!
Second week began with getting an Ash Split shunt put in my chest. I wanted to avoid this, but the nurse-coordinator convinced me that it's going to be necessary come time for chemo and re-implanting the stem cells, so I decided to go ahead and get something that will do not only for those things but for blood samples, the necessary transfusions and so forth. I now have a couple of tubes dangling from my chest on the upper right side, with the far end going directly into my jugular vein. I've been telling people at home that I have a tap on the side of my neck leading straight to my jugular, and that this is attracting a great deal of attention from the Goths on staff, not to mention the vampire wannabes. The tap may be a joke, but the Goths and vampires, now.... You can tell from the way they lick their lips when they look at your neck.
The unit I'm working with really does have vampires. Witness all that blood gathering. And they always want to start it before the sun is up, meaning they're safely indoors come sunrise. They call themselves BMT, for Bone Marrow Transplant, but I have deduced the real name. Bacon, Marrow and Tomato. They're good people, very conscientious, but be careful if you have lunch with them. Very careful.
From then on it's been a matter of getting injections of growth factor twice a day to stimulate growth of bone marrow stem cells, and in between spending five hours a day hooked up to an a-pharesis machine for harvesting stem cells. The area isn't too bad, really. WiFi is available, plus small TVs with first run movies. Harriet can sit by my bed so we can talk, or read. My plan is to stick to books, mainly, and maybe get off a blog entry to you guys.
The Ash Split didn't go in so smoothly as I hoped. I woke up about midnight Monday night, the first, and found a damp patch of blood on my bedsheet about the size of a dinner plate with another on my pajama top. (For Deadsy, this is being worn only to protect the shunt; I don't wear pajamas. That ought to settle her down for a week or so. Or maybe get her hyperventillating?) Needless to say, with the end of the tubes in my jugular, I was a little concerned. We went over to Rochester Methodist, the hospital attached to the clinic, where I had the dressing changed. Three times before we got the bleeding quieted down. It's never simple with me. Harriet likes to point that out from time to time. But then, I told her if she married me, it would never be boring.
That meant no sleep to speak of before heading into my first day of collection. I slept instead of messing with the computer or reading. Slept after I got back to the hotel. Collapsed after dinner and went to sleep at about 8:30. A few more bleeding problems on day two, plus I slept again. That begins to get on your nerves after a bit.
Got some explanation from the collection staff about why I've been so tired. For one thing, the effects of the growth factor, over-stimulating the bone marrow's production of stem cells, is extremely tiring in itself. On top of that, the machine pulls all of the blood out of your body roughly three times and pumps it back in. During this five hour process your cardiovascular system tries to maintain a steady blood pressure. It can't because all of the values are shifting constantly, but it keeps trying. The result is that each day is the equivalent of running a marathon. Two marathons down in two days, and we'll see how many to come. I can't really think of much besides when I can go back to sleep. Have to get my head straight. Can't let it go on like this. Straighten up and soldier, soldier.
This is getting a little jumbled together as I go back and make additions or corrections. I'm not sure I can keep the time line straight myself. Sorry about that. In Australia a while back I was mad enough to sign up for a hike to the Valley of the Winds, not far from Uluru. We made it in and out in a little over two hours, each of us with a liter of water, and only then did I see the sign which cautioned hikers to allow a minimum of two hours for the hike EACH way and drink a minimum of one liter of water per hour. Before heading in, the guide told us that she sometimes forgot that the people she was leading weren't as fit as she was. "So do try to keep up," she said. I'd get the time line straight if I could, guys, if I had time, but in the meanwhile, do try to keep up.
For the basic transplant, they want 4 million stem cells. Using 8 million or 12 doesn't do any better. They will go with as little as 2, but they don't really like it. I asked what the top one day collection was and was told that, very rarely, somebody produced over 20 million. That was my first day goal, but I missed it badly. 4.17 million. My doctor, Suzanne Hayman, has signed off for a collection of 8 million, but I'm arguing. Not for 20, now, but for 12-16 million. That would give me a full transplant with two or even three in the freezer just in case. They very seldom do a second transplant for amyloidosis, and have never done a third, but given the rapidity with which the treatments change, I want to be ready for anything.
Doctor Hayman signed off for 12 million. She says she's happy to go with 3 million for a base transplant. We're on track and running hot and true.
Got my second day collection report. Barely 2 million. I'm going to have to pick up the pace. Dr. Hayman won't approve an increase in the growth factor. I understand even if I don't like it. It does have its side effects. They'll only listen to me so far as to what risks I'm willing to take.
Third day collection reports in. Only a little over 1 million. Looks as if I'm definitely on the downhill slope of production. There's still a chance, though. Production can fluctuate. Additional bad news. I put on ten pounds yesterday. That's fluid retention, one of the side effects of growth factor. I've been fighting that with lasix, keeping the weight under control pretty much. Until now.
Trouble breathing on the night of the third collection day. Couldn't get to sleep. The fluid presses on the diaphragm, so the lungs can't work properly. Harriet got me across the street to the hospital where they put me on oxygen for the night. Tomorrow (fourth day; today, actually), will be the key. Can I pull up my production numbers?
Fourth day production numbers in. I'm down to 700,000 plus. Time to face facts. The number will continue to drop. In a day or two they'll tell me the tests show I won't make the minimum number for harvesting. I'm not going to make 12 million, much less 16. And they're giving me extra lasix to help control the weight, though so far it just seems to be helping me hold my own. The growth factor could very easily put me into congestive heart failure with the fluid retention. Been there, did that, didn't like it. Time to pull the plug, says I.
They don't let you know anything discouraging before they have to around this place. God bless them. Turns out my 8.6-8.7 million wasn't so bad after all. Turns out that a lot of amyloidosis patients can barely make 4 total. Turns out a lot of them can barely make 2. Seems I didn't do too badly after all. Hey, the kid can always pull it out when he needs to. Bring it on, Jack. Bring it on.
The weekend is mine, except for a few blood tests and some fragmin (blood thinner) shots. I don't think I'm up to Easter services—plus, I have to get some blood tests done during the hours of services—but I've made reservations to take Harriet to Easter brunch. And Will. Our son has flown out to visit for a week. God, it's good to see him.
Monday I have interviews with various doctors and others. The reason, I think, is to give me a final thumbs up for the chemo, to begin on Tuesday. Knock wood.
Looking around me here, I see a lot I'd like to think I would have noticed before, but I'm not sure I would have. I remember Harriet exclaiming in horror at Feng Du, in China, when the tide of crippled beggars came flopping toward the boat landing like a tide of Medieval horror. I barely blinked. They weren't the first crippled beggars I'd seen. But day or so ago I saw a young woman pushing an older woman in a wheelchair while leading a younger woman (her sister? Her daughter?) by the hand. It was painfully obvious that the youngest woman, the girl, was mentally challenged. Some people just get handed loads that can't be called fair in any sense of the word. But both older women were smiling. I've talked a lot about fighting, but I'm not the only one by a long country mile. You can pick them out, sometimes. The elderly man with a few wisps of white hair shuffling along behind his IV tree, mask in place and eyes fixed on something ahead. The little girl huddled in her wheelchair clutching her stuffed bear as she is pushed from one appointment to the next. And her eyes are so big. As big as half her face. She ain't here to get a hangnail clipped, Jack. This place is chock full of fighters. I'm proud to be in their company.
Had a letter from the Mayo forwarded to me. Seems some of you have given money on the name of James Rigney. I'd like to thank Mr. Chris Mardle, Mr. Matthew Longland, Mr. T.J.Rowe, Mr. Fredrik Trobo, Mr. Dennis Clark, Ms Krista Baker, Mr. Phillip Johnston, Mr. Kenneth Spores, and Mr. Thane Hecox. Thanks to you all very much, truly from the bottom of my heart.
Had my interviews with the doctors. I'm good to go. Tomorrow morning, 9 am. Let's boogey. Let's boogey.
I just got some mail from Brad Condray and "all the Maniacs at wotmania," pages and pages of get well messages. And never a troll in the lot of them. Thanks, guys. I can't tell you what it means. Thanks a lot.
PS Had my first chemo this morning, and though they say the side effects won't kick in for a few days, I have to say, so far, so good.
PPS I decided not to wait on my hair falling out in patches. First visit after leaving chemo was a barber shop where I told the man to take it all off except for the beard. Harriet came in shortly after he was done. And she didn't recognize me! Okay, it was from the back, but you don't think I'm going to let her forget it, do you? I'll get some pics out as soon as I can.
PPPS I was thinking, if I get a total shave and a wax job, plus a tattoo up the back of my neck (not a dragon. I'm thinking a salamander), this could be a whole new look for me.
I've received some further acknowledgements of donations to the Mayo Amyloidosis Research in my name, and I'd just like to thank Ms Joanna Stampfel, Ms Lelon White, Mr. Ryan Kelly, Gospodin Dzmitry Ludzik, Mr. Steven Rowell, and Ms. Krisztina Radnoti. From the bottom of my heart, thank you.
Also, many thanks to all of you who have posted about your own experiences with severe illness and chemo. Chemo treatments are all different, but I appreciate your posts. You are all fighters, or you wouldn't still be here.
Well, I got the stem cells transplant yesterday, and so far all seems to be going well. I essentially have no immune system right now and have to wear a mask whenever I leave the hotel room, but I actually feel pretty good. Of course, they told me that would be the case. In 4 or 5 days, when my white blood cells count hits bottom, I'll start to bottom out myself. Doctor Hayman suggested I might get sick enough that I wouldn't want to dress any further than sweat clothes, but I won't give in that far. I brought along almost every French cuff shirt I have, plus a dozen pairs of cuff links and a dozen pairs of braces, and I mean to look as sharp as I can every day no matter how I feel. When the disease pushes, I push back.
Don't worry that I'll be keeping you up to date on exactly how sick I get or anything of that nature. I'd have to be a lot sicker than I am to do that.
I received some additional acknowledgments from the Mayo of people who have sent money in honor of James O. Rigney, so here goes. My deepest thanks to Mr. Michael Nemeth, Mr. Ryan Tibbetts, Mr. Steven Odden and Mr. Spencer Martin. I really can't say how much this means to me.
One thing I should point out is that you won't receive an acknowledgement, and you won't get one either, not from me, if you send money in honor of Robert Jordan. Their patient is James O. Rigney, and they don't have a clue in the world who Robert Jordan is. Well, most don't.
Now, just a few tidbits, since there really isn't much happening here. I'm reading an old Tom Sharpe novel, Ancestral Vices, while waiting for a cousin to arrive for a visit, and the book is hilarious.
Well, the appetite is beginning to slip, and last night was miserable. I wasn't sick, per se, but I felt as if I were about to become sick shortly and I couldn't sleep worth a damn. Oh, well. I'm still doing pretty well. I managed a good (if bland) supper last night and a decent breakfast this morning. I am beginning to look around for any possible sources of calories I can get down for the future. That does mean anything, dark chocolate bars, ice cream, peanut M&Ms, anything. I'm not looking forward to it. The last time I got sick enough to be on this sort of diet, I lost 13 pounds in ten days. I mean, I like peanut M&Ms, but how many of the bloody things can you eat?
Okay, guys. This will be another short one. I don't have a lot of energy right now. But I want you to know I'm still kicking.
First off, a few thank yous. The Mayo Clinic—Amyloidosis Research Program has acknowledged receipt of donations in my honor from Mr. Kevin Woulfe, Mr. Richard Maxton, Mr. Noam Krendel, Dr. Robert Kluttz, and Mr. Chris Peterson. My deepest thanks, and to you in particular, Bob.
The good news is my numbers are climbing. Five days ago I hit bottom, the nadir, what they call Ralph Day. Well, I call it that; it fits too well. Normal White Blood Cell count is between 3.5 and 10.5. Mine was 0.1, as expected. Can't really get any lower. Same the next day, followed by 0.2. Then 0.3. And today, 0.6. Some of the PAs are talking about the possibility of me going home before next weekend! That seems unlikely, but whatever come around, I'll grab the ring.
The loss of appetite progresses apace, in part because of the amount of antibiotics I'm getting. In any event, it isn't simply a matter of finding yummy food. Fried chicken? Yesterday I ate a drumstick and half a Dolly Parton chicken breast (a reference to size, not breed or brand), plus two immense apple fritters, the size of bullfrogs. Today, I thought about heating up two drumsticks from the same source for lunch, and it was close to stomach turning. Not actually nausea inducing; just imparting the certainty that this would be a very bad idea. Today? Breakfast was an orange, a bran muffin, and two glasses of milk, which has a lot more calories than coffee. Lunch was two apple sauce cups and a couple of cups of hot tea. The days change, you see. They do change.
I certainly think I feel less "sick" today than yesterday. On a 1 to 10 scale of how sick do you feel, yesterday was maybe 4, today maybe 3. Or maybe it was 5 and 4. But my energy level is about 2, as well. Overall, I feel like something you might scrape off the bottom of your shoe. Did I say that already? I hope not. Accurate, though.
I try not to complain, however. Staff tells me I am doing wonderfully well, with my counts recovering in remarkable fashion. I have so far dodged the nausea, which I'm told is unheard of. I have come this far without once being admitted to the hospital, which astonishes everyone here. And there is a woman here—she was on the floor this morning when I went over for some IV antibiotics—who got her stem cell transplant 30 days ago. But she hasn't begun engraphment, the growing of new bone marrow. When you think things are tough, look around. You'll see somebody who has it tougher. I guarantee it.
Some of you have asked about my brothers and male relatives offering to shave their heads. Most have felt that since I did a voluntary slipping of my scalp, the pledge was not invoked yet. Good enough by me. The exception was Bill. Wilson is technically a cousin, but he has always been the fourth of the three Rigney brothers, and I'll tell you, I am as close to him as I am to my brother Reynolds, as close as I was my brother Ted. I could insert some pics here, but I will send them to Jason and let him post them.
I should have a long list of thank-yous for folks who made donations to the Mayo in my name, but that will have to wait until next time because I left the pages with the laptop.
I'm sending Jason something to post, either here on the blog or elsewhere. It's from my brother/cousin Wilson. I thought a long time before deciding to include it. It's awfully laudatory. Besides, you don't think he writes stuff like that for free, do you?
I made it out in record time, and would have made it faster still except for a few little glitches. First off, I began having coughing jags that led to me passing out. Believe me, you do not want to hear your wife saying, "Stay with me, babe! Stay with me!" sounding like the damned medic on a medivac. Then they shunted me off to ICU for a night, and there was the incident of catheter slap-stick which resulted in me flat on the floor with a broken toe and a foot approximately one-half black, deciding that I would, after all, wait where I was until someone came to give me assistance. I reduced two groups of doctors to stitches, holding onto the wall to keep from falling down, by recounting that tale. But it's definitely rated NC-17, so not here.
In the end it all came down to sodium levels, would you believe. Mine were low, and if they didn't come up, I wouldn't be going home.
Can you say bacon?
I had no appetite, and still have no appetite, but I managed to get down five strips of bacon a couple of hours before my blood test, so I passed.
For Chris Dalby, I wouldn't think of playing tricks on the staff here. At least, not beyond occasionally, when someone asks me to spell my name for identification purposes, spelling it R-i-c-h-a-r-d N-i-x-o-n or the like. No more than that. These guys are trying to keep me alive.
And for David Litwin, I've been in Montreal before on tour, and expect that sooner or later I'll be there again.
To those of you that have said nice things about my small show of support for my brother-cousin, thank you. He's what this is about however. To Nynaeve, you were absolutely spot on. He would have done the same to support me were the tables reversed.
I have read all your comments and well wishings and I sense that in your own ways, you love him as much as I do. That you have included sweet Harriet in your thoughts is most wonderful. Thank you for that. RJ is doing what few get to, pursue his passion. Parrot Heads will recognize the origin; most of us live as oysters. RJ on the other hand is a Pearl. Still, imagine the courage it takes to put your work out there for the entire world to critique. That you have embraced his imaginary world and him is humbling, but gratifying validation. However, I know the man, he would be doing the same, as a starving writer to a scant few as long as the publisher allowed. True, your devoted following has made it easier for him to pursue his craft, but pursue it he would regardless. And for making his road in life a bit easier to navigate, I again thank 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.
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.
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,
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.
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.
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.
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.
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, 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.
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.
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
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
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, advice, humor and well wishing help lighten their load. Thank you all.
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.
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.
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
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.
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.
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.
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.
But there is, of course, an elephant in the room. Amyloidosis has no cure. Untreated, the average patient lives only 12 months after diagnosis, says Dennis Krysmalski, founder and CEO of the Amyloidosis Support Network. With treatment, patients survive an average of four years.
Jordan's fans are full of sympathy, but also fright of a more personal and perhaps selfish kind. His readers have been following the lives of Rand, Egwene, Elayne, Mat, Nynaeve and Perrin for more than 16 years. Fans have shared their concerns on Web sites like Dragonmount, Theoryland and WOTmania. "Of course you wouldn't ever wish a possibly terminal disease on anyone," wrote one poster, codman25. "But what happens if he doesn't finish the book?"
It's a dangerous question. Most fans avoid posting such sentiments for fear of appearing tactless. Posters like codman25 are often chastised as insensitive by others who claim to care only for the well-being of Jordan and his family.
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.
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
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.
Wilson Brother/Cousin 4th of 3
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.
The good news is that there has been no change since we last communicated guys. Harriet and RJ had to fight like hell to keep it there, but that goes with the territory these days.
He told you that he'd be visiting the Mayo on every 90 days and that last month's visit was the first of those. Things don't always go according to plan when you're in a fight, you have to shift and adapt to the situation. Their visit last month lasted longer than expected. The medication regimen had to be changed due to some pretty nasty side affects. Testing required that RJ come off his blood thinner, the steroid and the miracle drug, revlimid. After months on this experimental drug got him into a near "normal" range, he was being pulled off for at least 30 days. We held our breath. The grand news is that the Lambda Light Chain number that was 2.7 a month ago was tested at on 2.74. FREAKING AMAZING! The polyps and the "mass" he described before are also gone. We joked that when they denied him food for over a day in preparation for further testing that his body looked for nourishment and there sat the aforementioned mass looking, well, pretty damned appetizing. Gone. So, back on the Revlimid. Pray that the numbers continue downward, that his body continues the slow march of shedding the beta amyloid deposits and that he regains his strength.
RJ had me laughing to the point of pain yesterday. You'll recall his wish list included sky diving and that I promised you I wouldn't let him throw himself from a perfectly good airplane. Seems he had a DREAM the other night that I'd gotten my way and we were at Lake Tahoe skiing. As he was negotiating the ski slope he was hit by a hot dogging snow mobile driver and had his leg broken in the collision. As they were hauling him off to be fixed up, he was shouting at me "you wouldn't let me sky dive because it was too dangerous, brought me skiing instead and now look what happened." Maybe I'll rethink the parachuting, not.
Long road ahead of us gang. I've looked but can find no one of the yellow available. Recovery will take a lot of time. I've asked before, now I beg, patience please. NO NEWS IS GOOD NEWS.
Peace be upon you all.
4th of 3
Well a bit rocky, but not too.
Janet, my ever-youthful bride of 32 years and I spent the weekend with RJ and Harriet in Charleston. They are both as fine as anyone could be in the middle of such an ordeal.
The weakness persists, an unwanted side affect of the medications. Claims that he could sleep 22 hours a day if Harriet were to allow it. She won't. You'll recall that we've both spoken cryptically of the nasty side affects of the drugs required to fight Amyloidosis. Prolonged exposure to both the Revlimid and Dexamethasone have left his skin thinned and fragile. As a result, he bruises and cuts pretty easily these days, so we passed on the opportunity to wrestle in the side yard. The cuts that are there are attended to daily by the best warder a person could wish for, Harriet. His hair is back in spades however, as is the beard. Not a gray strand on top, not one. The Lambda light chain number was up ever so slightly this month. No one, not even the Mayo, is concerned about that. Most likely this was due to the month of February being off the Revlimid and that in March they had cut the dosage by 40%. Besides, he told me he had an angel looking out for him. Really!
Though I've known him, well, all my life, he still hits me with a tidbit from time to time that I have either forgotten or never knew. Here's one of those. When he was 2 to 3 years old, seems he would on occasion dart out into the street in front of their home. Looking for traffic was out of the question. Adults would scamper after him and tell him that he had to stay out of the street or a car would hit him. He told them not to worry, that he had an angel who looked out for him and wouldn't let him be harmed. I asked him how he knew about the angel and he said he could sense that he was there. RJ somehow felt that the angel was a he even though angels are most often described as being without sexual definition. RJ even felt that were he to spin quickly around he would catch a fleeting glimpse of his angel as he vaporized to be unseen. RJ is feeling like, if not looking a bit like; one of those cars may have tagged him just a bit. But he knows that he has his angel looking out for him. I wonder if it's the same angel from his early youth. Hope so.
Well guys, I'm back. I know you'd like to hear from me every week or even more frequently, but I'm afraid that once a month is going to be about it for a time. I am trying to put every spare moment into A Memory of Light. There aren't too many of those spare moments right now. My meds induce fatigue, so it is hard to keep going. I'll fight it through, though. Don't worry. The book will be finished as soon as I can manage it. NOT in time for this Christmas, I fear. I don't know where that rumor got started. Except that Tom Doherty, my publisher, wants to put out the Prologue if I can have it polished to my satisfaction by August. That isn't easy. I always hate letting go. I have rewritten prologues almost from scratch after I finished the rest of the novel. I always think I can do better with another go around. Oh, well, I'll give it a try.
The news from Mayo is mainly good. My Lambda Light Chain numbers are actually in the normal range for a second consecutive month. Yes! And the lambda/gamma ratio also is in the normal range for a second straight month. Again, yes! That's the good news. The bad news is that Doctor Hayman hasn't changed my prognosis. There hasn't been any improvement in heart function, and while there may be some improvement, it may very well be that what I have is what I will have to live with. That is going strictly by the odds. Which she says if anyone can beat, she thinks it is me. I certainly intend to. Two years just isn't enough to do what I need to do. And even five, which she isn't willing to bet on, isn't enough. Don't talk to me about no stinking odds, gringo. I've got promises to keep. (With apologies to Eli Wallach.) As far as the heart function goes, I had one heart doctor put me on restrictions; no heavier that five pound dumbbells and so forth. That seems to me to just be holding on in place, and I can't afford to do that. I have to fight back. I have to get back to marching for the horizon. So I am ditching the doctor's advice. Very slowly (I don't want to fall over from a heart attack) I will start building with again. I look forward to the day I can tell the Mayo people that I am benching 100-pound dumbbells again. I won't push too hard, but I won't stand still either. I can see the horizon. I want to see what's on the other side.
Now, there is a gathering of Amyloidosis patients and care givers at the Mayo in Rochester in July. Unfortunately, I won't be able to be there, as I would have to turn around a week later and make the trip back to Rochester for my three-month checkup. That is a tiring trip, frankly, and I don't think I can face it twice in the space of ten days.
Here is the contact info:
Amyloidosis patients care givers relatives and friends—Midwest—East—West-South—No Geographical Limit—Must RSVP
Amyloidosis Support Groups Meeting
Guest Speaker—Dr. Morie Gertz and others to be announced later (I hope)
RSVP: Sandy Williams firstname.lastname@example.org
Muriel Finkel email@example.com
There are other meetings scheduled. I think the next after Rochester is in Atlanta. You can check at Amyloidosis.com to learn more.
Dr. Gertz is THE guru when it comes to amyloidosis research. He's the man!
For Sumana, thanks for your good wishes and your advice. I have only intermittent pain so far, and I am managing that pretty well. I have some pills if it really gets down to it, but I usually can work it through without the pills.
For Douglas Scott, thanks your prayers. Prayers are always welcome.
Well, guys, I have to hang it up for now. I'll be back to you when I can, and I promise to keep you abreast of the medical news, whether from Mayo or elsewhere. But my main focus is going to be on A Memory of Light. I think that is how you would want it.
Take care, everybody.
Many people have given gifts to Hematologic Malignancies Program—amyloidosis research since the last time I thanked anyone. For donations since then, my thanks go out to Virginia A. Schomp and Chip Bigness, Mrs. Janna Kamenetsky, Mr. Tony Witherspoon, Mr. Ryan Breen, Mr. Nathan Chu, Mr. Todd Lyons, Ms. Kathleen D. Moore, Mr. Doug Carrithers, Mrs. Deborrah M. Kozel, Ms. Melissa Craib and Friends at TarValon.net, Mr. Eric Selby, Mrs. Carolyn Goodwin, Dr. Chris O'Sullivan, Mr. Georgy Kantor, Mr. Andrew Childs, Mr. Doug Peters, Mr. Scott Dimick, Ms. Pam Harley and the Hattie Mae Lesley Foundation. Thank you very much, one and all.
During Dragon Con in Atlanta last week rumors flew about that my brother/cousin was gravely ill, wasn't eating and had in fact had "Last Rites" administered. I just got off the telephone with him and he's surrounded by laughing friends and relatives and is about to enjoy a shrimp-based bowl of gumbo. He got a chuckle out of news of his impending departure.
Go back and reread RJ's blog entries and you'll know exactly what is going on. Armed with those medical facts, if any of you have shared time with very ill relatives you'll know what person looked like and felt like during the ordeal. RJ looks and feels just like that. So, we're not taking any family photos at the moment.
Fact: He is ill, very ill. He has shared that with you in medical jargon. He has told you the prognosis of his physicians and told you that he plans to beat their predictions. I pray that he will. But should it not be in the cards, he'll manage that phase of his life as he has every step he has taken thus far. So, should you hear another "rumor" it's just that. Until you hear it from RJ, Harriet or from me, it's just a rumor.
Fact: He's told you that his appetite comes and goes. It does. He's taking a handful of medications everyday to help him in the fight. Unfortunately some of them have adverse affects on the appetite. Pretty much like a kid in that regard right now. He eats when he feels up to it, and says "No Thanks!" when he doesn't. When I visited a couple of weeks back he had a hankering for Cream of Mushroom soup served with rice and a dash of tabasco. RJ and Harriet were busy in the parlor, so I whipped up the soup. He told me it was good, but not as good as when Harriet prepares it. Duh!?!?
Fact: The deacon from his church visits their home for weekly worship services and to bring communion. RJ doesn't feel up to sitting on two hundred year old wooden pews for an hour. Painful even for someone in the peak of health, which you know RJ is not. These visits are to share communion, which is a weekly (at least) part of RJ and Harriet's lives. Same goes for Janet and me. When RJ is physically stronger, he'll be back on the hard pews. I hope that whatever your faith that you are able to "Commune" with God often.
Bottom line guys, he's been completely forthcoming with you from the very beginning of this ordeal. He intends to continue that dialog. When he and I spoke a few minutes ago, I asked if he wanted to end this rumor or for me to do it? I then reminded him that the last time he wrote you he was feeling as he put it "a bit viperish" and that his posting had kicked over a huge ant hill. He allowed that perhaps I should write you guys this time. Calmer heads and all.
Keep the prayer lines open please. He's a stubborn old cuss but welcomes, appreciates, yes even needs your collective petitions to our God. I'll be seeing RJ and Harriet in a week and will give them a hug and an "I Love You" from each and every one of you.
Thanks for caring.
Peace be with each of you,
Wilson Brother/Cousin 4th of 3
Epilog: Yes he is continuing to work through all of this medical calamity. A Memory of Light is going into the word processor and onto audio tapes almost daily. Not every day mind you, because the medical fight takes first priority. But, he told you he'd finish and he will. Fact is that it has been finished in his head for years. During a recent family sit around, he became the Gleeman and told the bones of it ALL to Harriet and me. You read that right, I did say ALL. Don't ask, ain't telling. Two and a half hours of story telling by the Creator himself went by in the twinkling of an eye. Truly magical. All I can say is WOW! Best stuff he's ever done. A Memory of Light is going to knock your socks off! That's a promise.
It is with great sadness that I tell you that the Dragon is gone. RJ left us today at 2:45 PM. He fought a valiant fight against this most horrid disease. In the end, he left peacefully and in no pain. In the years he had fought this, he taught me much about living and about facing death. He never waivered in his faith, nor questioned our God's timing. I could not possibly be more proud of anyone. I am eternally grateful for the time that I had with him on this earth and look forward to our reunion, though as I told him this afternoon, not yet. I love you bubba.
Our beloved Harriet was at his side through the entire fight and to the end. The last words from his mouth were to tell her that he loved her.
Thank each and everyone of you for your prayers and support through this ordeal. He knew you were there. Harriet reminded him today that she was very proud of the many lives he had touched through his work. We've all felt the love that you've been sending my brother/cousin. Please keep it coming as our Harriet could use the support.
Jason will be posting funeral arrangements.
My sincerest thanks.
Peace and Light be with each of you,
4th of 3
To Catalyst: Never, never lose faith. RJ did not. Harriet hasn't. I haven't. Going through what we have, our faith is only strengthened. Besides, if God didn't exist, we would have never had Jim. We did. God does. Remember my Brother/Cousin, my friend, think of him fondly and glorify God's name.
Cross posted from the EUOLogy section of my website:
My career, like many young fantasy authors, has been deeply influenced by Robert Jordan, and I find his passing a to be a tragedy for the entire community.
I still remember the first time I saw EYE OF THE WORLD on bookshelves. I was at my local comic store, which was the place where I bought my fantasy books. I went to buy the next book in the Guardians of the Flame series, and while browsing the new paperback shelf, I saw this HUGE fantasy novel there.
It was so big that it scared me, and I didn't buy it. (This is particularly ironic for me, who now regularly publishes books of 250,000 words or so.) Still, I can almost FEEL that moment, standing and holding the book in my hands, listening to someone play an antiquated upright of Cadash in the background.
EYE had such a beautiful Darryl Sweet cover. I'm often down on him as an artist, but with EYE OF THE WORLD, I remember why he became one of the powerhouses he is now. I think, even still, the cover of EYE is the best he's ever done—one of the best in fantasy. I remember opening the cover and seeing the second illustration on the inside flap, and wondering if it was a rejected cover design.
Either way, I loved the cover. The feel of the troop marching along, Lan and Moiraine proud and face forward. . . . The cover screamed epic.
I bought the book a few weeks later, and loved it. I was happy when, several years later, the next book came out in hardback. I couldn't afford it then, but I could afford DRAGON REBORN when it was in hardcover, and so I bought it. That has been my tradition ever since—I buy them, even if I haven't read the last two, as I wait for the series to finish.
I still think EYE is one of the greatest fantasy books ever written. It signifies an era, the culmination of the epic quest genre which had been brewing since Tolkien initiated it in the 60's. The Wheel of Time dominated my reading during the 90's, influencing heavily my first few attempts at my own fantasy novels. I think it did that to pretty much all of us; even many of the most literarily snobbish of fantasy readers were youths when I was, and read EYE OF THE WORLD when I did.
Eventually, I found myself reacting AGAINST Wheel of Time in my writing. Not because I disliked Jordan, but because I felt he'd captured the epic quest story so well that I wanted to explore new grounds. As his books chronicled sweeping scenes of motion set behind characters traveling all across his world, I started to set mine in single cities. As his stories focused on peasants who became kings, I began to tell stories about kings who became peasants. One of them those was ELANTRIS.
I only saw Robert Jordan one time. By then, I had begun attending the conventions. You could say I'd become a journeyman writer; I'd developed my style, and was now looking to learn about the business. At World Fantasy one year (I think it was Montreal), I saw a man in a hat and beard walk by in the hotel hallway outside a convention room. He was alone, yet distinguished, as he walked with his cane. I'd never seen him sit on panels, yet I felt that I should know who he was. I turned to the person beside me and asked.
"That?" they said as the figure hobbled around the corner. "That was James Oliver Rigney, Jr."
"Uh . . . okay."
"Robert Jordan," they said. "That was Robert Jordan."
Eventually, I got an offer on one of my books from an editor whom I'd met at that same World Fantasy convention. My agent suggested that we play the field, using that offer as bait to hook a larger deal at another publisher. But, this offer had come from Tor. Robert Jordan's publisher. Some fifteen years after I'd picked up that first printing copy of EYE OF THE WORLD, I still felt the influence of Jordan. Tor was his publisher. That MEANT fantasy to me. It's where I wanted to be.
I took the deal.
Now, he's gone. I'm sure many see this as an opportunity, not a tragedy. Who is the heir apparent? I wonder how many authors emailed their editors Monday, asking if someone was needed to finish the EYE OF THE WORLD series. Even if none of them are chosen for that task, there will be a feeling that Tor needs to push somebody to fill the hole in their line-up.
And yet, I sit here thinking that something has CHANGED. Something is missing. Some hated you, Mr. Jordan, claiming you represented all that is terrible about popular fantasy. Others revered you as the only one who got it RIGHT.
Personally, I simply feel indebted to you. You showed me what it was to have vision and scope in a fantasy series—you showed me what could be done. I still believe that without your success, many younger authors like myself would never have had a chance at publishing their dreams.
You go quietly, but leave us trembling.
He has gone where pain and suffering are no more.
Whenever he was able to be at the computer, he checked the blog first thing. Your e-mails REALLY MATTERED to him. He loved them ... and I think in some sense he loved you all.
I never thanked you for all my birthday messages, but I do now. We had a nice party...about a dozen people, ranging in age from 4 months to 82 years, sitting around the dining room table which had been covered with lots of newspaper, picking our own lovely boiled local shrimp, eating corn on the cob and homemade biscuits , and later eating watermelon; a good deal of white wine went down our gullets, too. I should add, no cooking was done by me. My dearest first cousin, also named Harriet (we're both named for her mother), did it all, just about.
It was a happy time. Jim made it so.
He came like the wind, like the wind touched everything, and like the wind was gone.
These are words Jim said to me several books ago, in the weary but always thrilling hours of putting the manuscript to bed, ready to carry to New York in the morning—I remember grabbing a piece of discarded script and scrawling those words up the margin, because they were so beautiful. He was talking about Rand. I of course am not.
I know he touched all of you. Thanks for being there.
Here is his final interview, given to the local newspaper. Notice the date:
Robert Jordan aims to get back on feet
Thursday, September 13, 2007
Jim Rigney intends to "keep marching to the horizon." Stage One is getting back on his feet.
Known to millions of readers as Robert Jordan, the best-selling author of "The Wheel of Time" fantasy series continues to cross swords with the rare blood disease amyloidosis, a progressive disorder he was first diagnosed with in December 2005 at the Medical University of South Carolina.
Subsequently, the author has been undergoing treatment at the Mayo Clinic in Rochester, Minn.
Rigney reports that with the help of the Mayo Clinic, he is keeping things under control.
"My numbers are still good, in the normal range. We will be going back up to the Mayo in about a month and we'll see what the status is. Now I just have to get my foot healed up so I have a chance of getting out of this wheelchair. Strange to think that my foot, of all things, would be giving me the most trouble. It's getting better, but unfortunately the amyloidosis makes healing go very slowly.
"When I get the foot better then I can start on the process of walking again. I hope to do this in another two or three months."
While there has been no improvement in heart function and no change in his overall prognosis as of June, Rigney says improvement remains possible. And he's determined.
"I've got promises to keep."
And he did march, guys. He marched toward that horizon until he crossed it, where we cannot follow yet.
The word now, the only possible word, is Onward.
Go for it. With love.
Consider yourselves hugged.
To be honest, I don't exactly remember what my first reaction to that gut-wrenching statement was. I remember being worried for Harriet, and I remember being sad for Wilson because I could hear how upset he was on the phone, but in that infinitesimal moment when the words first sink in, I think I felt a wide array of emotions. There was sadness, of course, and shock, because we had just received good news in the previous blog entry, but there was also ... what? Disappointment? It would be a lie to say that I wasn't heartsick at the thought that RJ wouldn't be finishing the final volume in The Wheel of Time. Most of you I'm sure, felt it too. Just as he was honest with us until the end, so I will be honest here. I think we're all sad, and at least a tiny bit frustrated, by not having A Memory of Light completed in the way we wanted and hoped for.
Before you think poorly of me, hear me out. Obviously, we can't blame RJ for that. To do so is to show a lack of understanding of the way he worked and the way he fought this disease. Amyloidosis is a brutal disease and nobody could fight as hard as Jim Rigney. His blog is a testament to his fight and his dedication. He proved to us, right here, that he was Aiel to the core: "Till shade is gone, till water is gone, into the Shadow with teeth bared, screaming defiance with the last breath, to spit in Sightblinder's eye on the Last Day." I don't think there could be a stronger statement that defined RJ's fight with the disease. When I say I was frustrated, it lasted only a fraction a second. It is, in part, our ability to overcome our negative emotions that makes us human to begin with. I took that frustration and fed it to the flame, and let the void surround me. There was work to be done, fans to be notified, and questions to be answered.
Thus began a three-day adventure that I'll never forget.
A quick note: For those of you who may not know, Robert Jordan was a pen name used by James ("Jim") Rigney. Jim is survived by his wife Harriet, his step-son Will, his brother Reynolds, and a full host of cousins, nephews, nieces, second-cousins-twice-removed, and more. A few people have asked me who Wilson is, and what a "Brother/Cousin, 4th of 3" means. Indeed, it sounds like a bizarre mix of the Borg, southern genealogy, and the even stranger Aiel relationships, but it's actually quite simple. Wilson is Jim's first cousin and they have always been very close, so close in fact that they considered one another brothers. So, that's where Wilson's use of the term "Brother/Cousin" comes from. The "4th of 3" refers to the fact that Jim was one of 3 brothers (Ted, the third brother, passed away a few years ago) and Wilson was considered the "4th" brother in that family.
Jim lived in Charleston, South Carolina, in a beautiful old home that's been in Harriet's family since the 1930's. One of the kindest gestures I received this week was having Wilson say that I would be welcome there, and at Jim's funeral.
On Sunday evening, I posted the news of RJ's passing several hours after it occurred. Wilson sent me the brief write up that you've all read by now. Within minutes, the Dragonmount.com server began to see an unusually large increase in traffic. Within an hour, the site had slowed to a crawl. By the following morning, it was nearly impossible to get to RJ's blog. Initial reports run by the DM admins on the server at the time suggested an increase of traffic of about 250-300 times the normal amount. We estimated that it would take about 120 extra CPU's to fully handle all of the requests coming in at every moment. The DM server is brand-new, still cutting edge, but with the kind of numbers we were seeing, all we could do was try to keep the website stable.
The next morning I found myself on a plane flying from California to South Carolina. I grabbed a rental car and set off to drive to Robert Jordan's house. Let me pause here a moment and say that again: I was driving to Robert Jordan's house! If you're as much of a fan-boy as I am (and I know there are A LOT of you who are AT LEAST as big a fan as I am of his books), it would be a wild and crazy thing to think of going to the Creator's house and seeing where the books were written. Less than a week ago, such a thing would have seemed ridiculous to me. South Carolina is so far away. The closest I had ever come to visiting the Deep South before this trip was watching Gone with the Wind, and attending DragonCon in downtown Atlanta a few years ago, a decidedly different experience than visiting Charleston.
Jim once told me that he lived in the Two Rivers and suggested I check a map. I never had his mailing address though, and I couldn't exactly Google it, could I? But now, having been there, I can tell you that he wasn't kidding. He lives in the Two Rivers! Charleston proper is situated on a peninsula. The two bodies of water on either side of the peninsula are rivers, the Ashley and the Cooper. Jim and Harriet are very near the tip of the peninsula where these two rivers collide. They're deep in the Two Rivers. You might say they live as deep into their Two Rivers district as Emond's Field is in its own.
All of the homes in this area are old historical buildings, usually three, maybe four stories tall, with the well-known pillars and balconies that define the architecture of the southern United States. Jim and Harriet's home was completed in 1795. As I drove up their street, looking for the right house number, I saw a large white gate, and knew that I'd arrived. Carved into the gates are two large, sinuous creatures with five fingers on each claw. The symbol of the Dragon used in the books. I had found it.
That Tuesday evening when I arrived was filled with so many amazing memories. I'll never forget it. First, I want you all to know that I found Harriet very quickly (or rather, she found me) and I let her know (on behalf of myself and all of you) that I was sincerely sorry for her loss. Her way of replying was to give me a warm smile, look me in the eyes, and say, "For you as well." Harriet is an amazing woman. You've heard RJ say it over and over again, but this week I saw it for myself. A southern lady to the core, Harriet is the essence of grace, with an easy manner that makes you feel like an old friend the moment you meet her, and an air of poise that belied her grief as she comforted others. Her eyes are warm and gentle, and sparkling with intelligence and wit. Oftentimes, I saw her with tears glistening in those lovely eyes, but she had just as many smiles to give to the rest of us. More, actually. She sang and clapped her heart out. She laughed with, and hugged, and kissed everyone who came to visit. I was welcomed into her home as part of the family this week, and cannot find the words to express how humbled and honored I am to have been included. By welcoming me, she and the rest of Jim's family welcomed us all as a unified collection of fans. Have no doubt that you were all there with us that evening.
A bit about RJ's home. God, where to begin? Every wall is covered in artwork, most of it paintings. There are some photographs, but by and large those were only present at desks or set in a frame under a lamp. The parlor has several floor-to-ceiling bookcases filled with nothing except all the various editions of The Wheel of Time. It seemed as though every edition for each book was there and all of the translations. I'm six and a half feet tall and I would need a ladder to get to the upper shelves. If you have seen the book [?], then you've seen the large, antique dragon chair that RJ owned. It's pretty darn scary up close. It sits near the bookcases like a guardian ready to spring at the unwary critic. The effect, however, was a bit ruined by the fluffy pillows and blankets draped across it. :)
As wondrous as the house itself is, the most exciting place to visit is, of course, the place where it all happened, the carriage house. This is where RJ wrote all of his books. Inside is a library of over 16,000 books (yes, you read that right) and at least several hundred bladed weapons. Swords, axes, spears, and knives of all shapes and sizes line the walls and shelves of his office. Both the upstairs and downstairs areas are jam-packed with this stuff. It was like walking into a used bookstore that also happened to sell weapons, smoking pipes, and funky hats. I guess RJ liked to wear different hats when he wrote. Not just the ones you saw him wear on tour or in publicity photos, but wacky Viking helmets or jester hats. Who knew? Maybe it helped him get into all the different characters. Maria, one of his assistants, seemed to think he did it just to keep them all laughing, or guessing about his sanity.
One other thing about the carriage house is that it was filled with gifts sent to him by fans. There were sketches, paintings, sculptures, plaques, and other memorabilia that he had received over the years from people who loved his work. It was pretty clear that he treasured those things. So, if you were ever a fan who sent in letters or gifts, be assured that he received them. I also received confirmation that he read every single letter written to him over the years. Clearly, he did not always have time to reply to them all, but he read every one and it meant a lot to him.
Okay, one last carriage house story, then I'll move on. While I was there, the temptation to sit down at his desk, in his chair, at his computer, became overwhelming. I noted at the time how strange it was to be feeling as though this act were sacrilegious. Of course, I meant no disrespect. I just wanted to sit at the place where these books had been written. As I eased myself into the chair, I was overcome by a profound sense of excitement and sadness. I could feel his presence and his eyes on me in this place where he poured out so much of himself through his writing. The screen was dark as my fingers hovered over the keyboard, aching to touch the letters. I typed the word "RAND", just a silly attempt to mimic the strokes that keyboard had seen countless times before. The computer screen, which a moment before had been a dark sentinel guarding its Master's desk, suddenly sprang to life from sleep mode and beeped loudly at me. I damn near jumped out of my skin! I vaulted from that chair as if the Dark One himself were in pursuit and fled with the distinct realization that there were a lot of sharp swords and scary masks watching my hasty retreat!
That same Tuesday night while we were outside, Wilson pointed out to me that even though we were in the downtown area of a major city, if you closed your eyes and listened, all you could hear were crickets. Our beloved RJ lived in a slice of heaven, my friends. You probably have heard him speak of how much he loved that city, and I can now see why. Look at these photos and the lush jungle of greenery that surrounded him. I have little doubt that the trees and landscape of his home helped him to imagine the Green Man and the Nym, the Ogier Groves, and the eternal forests in dreams where wolves hunt and dreamwalkers dwell. It was here in his Stedding, beneath the trees and a canopy of stars that I stayed late into the night, sharing stories with Jim's friends and family and letting the peace of the warm southern evening pass through me.
The following morning I arrived back at the house early. Even after the warm welcome the night before, I was amazed to find myself seated at the breakfast table with the members of his immediate family. (Somebody invited me to sit in Jim's chair, but I hastily declined because of my last adventure with one of his chairs. The walls of the dining room were covered in paintings of Jim and I felt them "giving me the eye.") The newspaper reports were rolling in and we all read them. One of them... the London Times, perhaps?... even used the term "Randland". Ha ha ha! I got a great chuckle from seeing that term used in a major newspaper.
Shortly after breakfast, I found myself helping out by doing dishes. Washing dishes is a soothing task for me, so I find that I do it quite often. (My wife thinks I'm crazy, but she never complains.) Also, I figured that, had any of you been there, you probably would have done the same thing. Jim has given so much to us that doing a simple chore like washing plates on the day of his funeral was an easy task to do. It also helped pass a little time before going to the church.
The funeral took place at St. Stephen's in Charleston. It's a small church with a simple and glorious beauty. Jim's ashes were on a pedestal in front of the altar. In addition to family and friends, I saw some fans who had come to pay their respects. Among them was Melissa Craib, the founder of TarValon.net. I was glad for her presence as she was someone I knew well, but more than that, I was glad she was there because she was another fan. Jim would have wanted her there. Melissa has already written up a report on the funeral. You can read it here.
Tom Doherty, the founder and president of Tor Books, gave the eulogy. He said Jim was one of the greatest storytellers of the 20th century, and that he believed time would show the same was true for the 21st century. I couldn't agree more. Whether or not you like the books, regardless if you're frustrated by their size or pace, I think we could all agree that the sheer majesty and scope of the Wheel of Time series is unparalleled. Simply put, it's the longest, and perhaps the most accessible, epic fantasy saga today.
By the way, I had the amazing fortune to be able to talk at length with Tom D. over the course of my visit. Tom is a man whose experience and insight into publishing is eclipsed only by his warmth and kindness, and his love for Jim and Harriet. If that sounds overly sugary, I assure you it isn't. I would be hard pressed to meet another man as kind and attentive as Tom.
Harriet's son, Will, Jim's brother, Reynolds, and Wilson all spoke at the funeral. Wilson read a truly moving essay that touched me deeply. I'll post a copy of it soon.
In the end, the most amazing part of the funeral was the singing. Now, I won't claim that we had the most talented vocalists in attendance, but what the congregation might have lacked in talent, it more than made up for in spirit. And that is what we sang, spirituals. Songs with roots that run deeply through the southern experience and blossom at need to replenish the hearts of the grieving and remind them of the hope that lays in faith. At one point, the church was bursting with song. I remember looking up as we raised our voices to heaven, and I thought of all of you fans who were not present. I thought of how, with the people above in upper balconies and the white walls, this must be a little what it's like to be in the White Tower for assemblies. The songs rose into the air, and together we sang Jim's spirit into heaven, and into one another, and around the world.
I should mention that Harriet wore one of Jim's hats to church. You know those wide-brimmed hats he wore on tour? (Not at all dissimilar to a hat worn by a certain ta'veren gambler.) Well, Harriet was sporting one of those very stylishly and it choked me up to see her wearing it.
Following the funeral was a reception where everyone could mingle and chat. I had met many of the people there the night before, but this became an opportunity to meet even more folks, and go deeper into conversation with those I had already spoken with. Many fond memories of Jim were shared. Aside from being a famous author, the fact that so many people would attend his funeral and have nothing but good things to say about him speaks volumes about the kind of man he was. I had come to Charleston for Robert Jordan's funeral, seeking a chance to say good-bye to a well-beloved author. What I actually found after three days with his family and friends was so much more than I could ever have imagined. I was gifted with the opportunity to learn about Jim Rigney, the man, a far more fascinating person than Robert Jordan could ever be.
I spent the few hours between the funeral and the burial touring downtown Charleston and mingling at the reception. Harriet's cousin, Harriet (yes, another Harriet), and her husband George were gracious and gave me a tour of downtown Charleston. I was able to learn a bit about the city and places Jim used to frequent. Most notably, I saw the Yacht Club where he was a member. One thing that strikes me about a place like Charleston is how much HISTORY there is everywhere you go, and how people here know their ancestry back multiple generations. Harriet and George told me that they were instructed when they were young to "know the maiden name of all four of your great-grandmothers." I was only able to come up with one of them. I promised George that I'd research the other three and get back to him! Many of you are wiser than I am and already know this lesson, but for those who don't know it yet, I humbly offer it here. Take the time to learn about your roots! Know who your family was and how you ultimately came to be. Most of our personal histories are still passed through oral tradition. So, take the time at some point in your life to know those who came before you and pass the information on to those who follow. This is clearly a lesson Jim learned early in his life, or maybe had bred into him from the start. These histories will help complete you and may even spark creativity or insight that you didn't know was there before.
The final stage of Jim's funeral was his burial. Once again I was humbled by the family's invitation to attend this very private affair. We buried him out in the country, and I say "we" now because it was made clear to me numerous times by different people that I was an honorary member of the family, a distinction that I kindly extended to all of you in spirit. Harriet dropped rose petals into the grave with her son Will by her side. At one point, she was presented with a folded United States flag as is traditional at the burial of a U.S. veteran. The men in Jim's family; Reynolds, Will, Tom Jones, and Wilson, all placed the dirt on top of him; an eternal blanket to keep him for the Ages.
The church where he was buried was completed in 1785 and has had continuous services since then. Jim and Harriet were married there. His grave is next to that of several family members who preceded him and Harriet told me that one day she would rest next to him at the same site. Prayers were read, songs were sung, and tears were shed. This was, by far, the hardest moment for me personally. Despite the sadness of those present, you could see the deep bonds of family coming together to support each other. The Rigneys, like your family, like mine... are just that: a group of people who have discovered that together they are greater than the sum of their individual members. I saw Jim's family brought together by his life. Like any other family, I'm sure they have problems and disagreements, but the strength in their love for one another is evident when they gather together. These were the people who loved him, and I'm proud to have stood with them as your representative.
While the tears flowed, and the bagpiper from the Citadel played his mournful tune, I saw something radiant which made me smile. A little baby, only a few months old with beautiful eyes, was looking directly at me. I snapped a photo of her because here was a sign of new life and promise among the cold stones and the earth. Here was someone that Jim probably cherished in his last months and would have wanted the world for. The Wheel of Time turns...
Towards the end, when most of the family was finished with their farewells, I took a moment to sit before Jim's grave. I tried to recall that first excitement I had when I read The Eye of the World thirteen years ago. I offered a bit of that feeling to him, so that the joy of having read his books might stay with him for a while as he rests. Once again I thought of all of you and told him how much we all loved him. I thanked him for the gift of his books, and I bade him farewell.
I remembered the previous times I met Jim (when he was on book tour). I would always see him and think "Wow! That man right there is Perrin and Mat and Elayne and Loial, and Asmodean and Elaida and everyone else all made flesh." I would imagine that by shaking his hand I would be shaking all of their hands. As the burial approached, I had expected to feel a similar thing when he was buried. I expected to feel as though we were laying all of those characters into the ground, but that never happened. I realized that these characters and events are very much alive and present. Go into any bookstore and Mat is as alive and witty as ever. Rand will always be his charming and...uh...moody... self. The Forsaken will always be a threat. Jim gave these characters life, but we sustain them, and that is what I truly believe applies to the living as well. We live life in order to interact and be with others. By sharing a bit of yourself with another person you connect with them on a deeper level. There is energy within and between us all. Life, God, or the True Source, whatever you want to call it, is what I think we're here for, or so I felt at that particular moment at the foot of Robert Jordan's grave.
Jim had wanted a certain song to be played at his funeral, Samuel Barber's Adagio for Strings. For some reason it wasn't possible to do it, so after most people had left the burial ground, Mary, Harriet's cousin whom Jim had treated and loved like a daughter, loaded the CD up in Jim's Porsche and cranked it up. The music evoked a sense of sadness laced with hope and the promise of salvation.
Oh, and, by the way, I got to ride in that Porsche on the way home. Jim bought it for himself when he became the New York Times #1 best-seller for the first time. (Book 8, I think). He told me a couple of years back via e-mail that "it handles like it's on rails." Indeed, it did.
The rest of Wednesday was spent back at the house. Once again, I walked through the carriage house, this time taking photos. (The swords and hats no longer seemed angry with me for sitting in his chair.) Wilson took me upstairs in the main house where I saw the original painting of the cover from The Dragon Reborn. This is the one for which Harriet asked the painter to remove Ishamael's face. I also was able to see Jim's numerous war medals, and those of his father.
The evening went on, and night fell. My flight for home left the next morning at 6 AM (yuck). Making my farewells was hard, as I had genuinely come to enjoy everyone's company so much. I felt like I was leaving the Winespring Inn in the Two Rivers. Several of the ladies wanted to make sure I had had enough to eat, and a few of the gentlemen wanted to be certain I had all my travel arrangements in place. On both of my back-to-back nights leaving Jim's house, I walked away with a plate full of food. I now know what the term "southern hospitality" means.
I could not possibly write about all of the conversations I had during my time in Charleston. There were so many of them, and much of what was said was somewhat private in nature. Mostly, conversations were about everyday things, but the WoT geek in me was curious, and so I poked around. I can tell you this much: nothing about the plot of the final novel was revealed to me. I'm no closer to the identity of Asmodean's killer than you are. (Although, come on people, it's been 15 years. You should know by now. Go read the WoT FAQ. When I suggested to Maria who I thought it was she gave me a "Don't-even-go-there" look.) What I do know about A Memory of Light is that we need to give everyone time to figure out what's going to happen with it next. Wilson has already revealed previously on RJ's blog that Jim left some pretty detailed notes on what would happen. He, Harriet, and presumably Maria and the other assistants, all know the endings and secrets. There are both written notes and audio recordings of Jim saying what happened. (Wouldn't it be cool to have that audio published with the final novel someday? Tor, are you listening?) How or when we'll see A Memory of Light in published form needs to be worked out. Jim's death is too recent and the wounds it left too raw to his family to say when the last volume will be completed. Time will provide us with the book we want, and the conclusion the series deserves. We just have to be patient.
Speaking of conclusions, so ends my adventure. Although, as Jim has told us eleven times before, there are no beginnings or endings to the turning of the Wheel. I hope this gave you even a little taste of what it was like. I'll never forget those days at Jim and Harriet's house. I am saddened by our loss, and at the same time, overjoyed by the opportunity I was given. I wish each of you could have seen the bookshelves, felt the grip of the swords, and heard the crickets. And the music. Wow... the music especially will stay with me forever. The Tinkers and Ogier need look no further for their songs than the ones we sang to Jim Rigney when we gave him to the earth.
I'll end with this beautiful quote that was printed on the back of Jim's prayer card at the funeral. I have a bunch of them and I'll figure out a way to give them away to some of you. The other fans at the funeral may have already posted them. The quote reads as follows. I have it burned into my memory.
"He came like the wind, like the wind touched everything, and like the wind was gone."
Thank you Jim, for touching my life, and the lives of all those reading this and beyond. We will miss you so.
In loving memory, and on behalf of all those reading this, I remain,
Thank you for all your support. James Oliver Rigney was a remarkable man. I am proud to have known him, to have been raised by him and to know him as a father.
I wrote the following 2 days after he passed away. It seemed to me that some readers might like to know some of the following. Thanks again for your support.
The death of Jim is undeniable. His absence is undeniable.
His presence is absent from my life like a mountain might be over time, but with Jim, it was in three hours.
I arrived 10am, my cousin Mary somehow pulled strings at airport. She was able to park Jim's car at the curb of the terminal building and then get to the gate to meet me so that we could get to the hospital as quickly as possible.
I took turns with others and sat with him on and off for 4 or 5 hours. He was incapable of speech. Somehow he had developed a fever but it was unclear what the reason was. They gave him every test to determine the reason. Tom Jones called. I put him on speakerfone and held the phone to Jim's ear. TJ told him that he loved him and wished he was there. Jim definitely responded as though he recognized Tom's voice. He smiled and closed his eyes, and I think he felt Tom's love.
This fever, on top of myriad critical breakdowns, was killing him. Occasionally, he trembled as though extremely alarmed. I think he was having nightmares.
I kept wiping his forehead with a damp cool towel. I held his hand. I encouraged him to rest easy. I told him I loved him.
In a little while his breathing began to slow.
There were many of us there, his family. Only two people were allowed at a time as visitors to see him. Will [Wilson] and my mother were with Jim—I had been asleep in the waiting room. They woke and got me. He had died.
His breathing had kept slowing. He had begun to die and he did die very peacefully. His breathing simply stopped.
It was obvious when I saw his body. He was gone. This tremendous man had moved on. I knew that this body on the bed had been Jim. I knew that the fire which moved him, which was Jim, was no longer in that body.
I knew that the loss of the fire of his life was who I mourned. His presence. His force.
What a wild ! and ferocious spirit. What a fire.
James Oliver Rigney was a great man of mind and heart. He loved learning and he loved spinning yarns. He was extremely playful and would become a cast of different characters. He occasionally became the character of the drunken Irish butler who was contractually bound to live under the stairs. The one who had to confess he had been watering the whisky, but only moderately, and never on the Sabbath. He had an immaculate Irish accent. His singing voice was beautiful. He loved to sing sea-chantys and anything else. He sang loud and strong and clear. On holidays and dinner parties he would sing for hours.
He was a very funny man. And what I think I loved most about his sense of humor was how funny He thought his jokes were. Not that he was a bad joke teller! He could spin some of the most absurd stories, which might begin quite casually and matter-of-factly. Upon delivery of the punch line or if he realized that my adolescent gullibility had waned, sometimes his face would turn bright red and he would laugh intensely, and silently, as though the mirth in it, if given voice, would knock out the walls of the house. His belly bouncing.
He would tell me the sad stories of the Nauga. I was 11 or 12. He spoke about "the huge numbers of those doomed rodents—all slaughtered to make so many couches and chairs." That was a perennial favorite of his. Explaining where naugahyde came from. That, and his suggestions that the "barrel-method" was optimal for rearing children. "It's quite simple, you see. You deposit the child in the barrel when he remains, if a boy, until his 35th birthday." She-children, of course, released upon their 18th birthday. He used to smoke a custom blend of tobacco in a pipe, one of hundreds of pipes he had collected. He was clear with his strategy for health as a result of smoking. "You see," he began, "I intend to become as though a creosote log, coated in tar and hence impregnable to nature's wear and tear." In short he would finish that of this he "was certain." Under the brim of his dark fedora I could see the light in his eye and it was a playful light. I can see him now. I love you Jim.
Over a hundred people e-mailed condolences to the undertaker in Charleston. There is no way to respond on that site, and I just can't do individual responses. I hope that those who wrote there also read the blog—thank you all for your very kind messages. I've read them all, and so has Will, and I've sent them on to Reynolds and Wilson.
The word now is ONWARD.
With love, Harriet
Since posting the report on Robert Jordan's funeral, I've come across some more items I'd like to share with you. (With permission from RJ's family of course).
First off, Tom Doherty and Wilson were kind enough to share the words they spoke at RJ's funeral with us. Tom is the president of Tor Books (who published the Wheel of Time), and has been a friend of RJ's for 30 years or more. Here's what he said at the eulogy:
"He came like the wind. Like the wind touched everything and like the wind was gone."
Jim Rigney, Robert Jordan, friend, doer, dreamer, maker of dreams, one of the great storytellers of the 20th and I believe time will prove 21st century as well. His Wheel of Time is a towering epic of power and scope. After praising it extensively, The New York Times said of it:
"—the evil laced into forces of good, the dangers latent in any promised salvation, the scenes of unavoidable onslaught of unpredictable event—bear the marks of American national experience during the last three decades"
Truly Jim wrote for us all.
And Harriet, the love of his life, what a team, Harriet is the finest editor I've ever worked with. Working together they produced wonderful things. His first two books, Fallon Blood and Fallon Pride were published by her company, Popham Press as a joint venture with Ace where I was publisher and she had been Editorial Director. And then at Tor, another Fallon, Conan and the Wheel of Time. The Wheel, which has touched the lives of so many millions and down the generations will touch so many millions more.
Jim was a man of courage and heart and vision. He was my friend of 30 years. He's gone ahead of us now. Beyond that last horizon to a place we cannot yet see. But I think he can see us and he's glad we're together and he's already thinking of stories he's going to tell Harriet and then the rest of us when we get there.
We miss you Jim. Thanks for all you've left behind.
Thank you, Tom, for sharing that with all of us.
From Irish Cream,
by Father Andrew Greeley
"The issue," said the little bishop in him homily, "is whether the tombstone or the flowers are more ultimate. It is perhaps odd that we Americans celebrate our day of the dead just when life flourishes and summer begins. Somehow we have our symbols confused. My parents called this festival Decoration Day because it is the day when we used to put flowers around the tombs. Now we put them everywhere and perhaps forget about the meaning of the festival and tombs. We honor those who died in the country's wars-millions of young men whose lives were cut short before they had a chance to flourish. All war is foolish. Some may, however foolish, also be necessary. That is not for us to decide today. We must rather consider those long rows of white crosses-and Stars of David-and think of how much those young men might have contributed to the life of our country if they had been given a chance. We must also think of the parents, the wives, the sweethearts of those who are buried in the military cemeteries and how much their lives were blighted by early and sudden death.
"It might be said that they died for their country. It is more likely that they died because they were drafted and had no choice. They may also have died because political leaders or military leaders made tragic mistakes. We must not use this day of the dead to glorify war but rather to sorrow for those who died and for those who lost them.
"We must also ask God, with all due respect, why he permitted all these young lives to be cut short with such tragic results. We don't expect an answer but we must ask the question. Indeed he expects us to ask the question and not to lose sight of the tragedy.
"Yet we put flowers on the tombs and we surround our homes with flowers. Hence the question: Which is more ultimate, the flower or the tomb? Death, which the white cross represents, or life, which the flower represents? Do we just make the tomb pretty or do we defy it?
"I put it to you that we defy the tomb. We do not pretend that there is no tragedy in all these deaths. We do not turn away from the stupidity, the futility, the ugliness of death, of any and every death. Because of our faith we seek to transcend it. Love is as strong as death, the Song of Songs tells us. It is a kind of draw between the two. If, however, love cannot prevent death, so death cannot prevent love and thus in the end love wins. Consider the lilacs here on the lawn: they ought to have been wiped out long ago by the wind and the snow. Yet they reappear every year at this time to remind us that there is beauty in the cosmos. If there is beauty then there is Beauty with a capital B. And if there is Beauty, death is not quite the end. There is yet more to be said. Beyond that today we cannot go and we need not go. All the beauty of this wonderful day once again defies death and we join in that defiance. Life is too important ever to be anything but life."
I have photos of family around me in my office. They are a gentle reminder that we work to have a life, not the other way around. In one of those photos, Jim and I are shoulder-to-shoulder, our heads leaning in and touching at the temples. A private moment captured by my Janet. At the end of a busy day in mid-October, I was heading towards the door, glanced at the photo and thought, "I haven't called him in days. I need to do it on the way home..." Then it hit me. I can't call him. He won't answer. The stages of grieving are something with which I am all too familiar. I knew what to expect: loss, denial, guilt, anger and finally acceptance. Even so, it is a trip we each must take every time we suffer a loss. And there I stood, staring at the photo, weeping for my loss and feeling guilty for forgetting, if just for a moment.
Thank you for your prayers, your well-wishing, your concerns about our family and especially for the mountains of praise you have heaped upon my Brother/Cousin. Thank you for every note. I have read all of them, all. They have offered more comfort than you could ever imagine. We are healing.
Here in this forum, I want to publicly thank Jason. He has been and continues to be a loyal fan and friend. Through his words and pictures you have been allowed a peek into the world that was my Brother/Cousin's. Jason told you he came to Charleston feeling a bit of anxiety. It didn't show. He blended into our family fabric as if he had always been there. Still he was there as your representative. The questions he asked were those you would have asked. The things he wanted to see were what you would have wanted to see. He touched, smelled and tasted life in the Two Rivers. With Jason's words and photos, I pray that you were able to gain a sense of closure.
Plans are well underway to erect a permanent memorial detailing the life and accomplishments of James Oliver Rigney, Jr., aka Robert Jordan. The site could not be more perfect, the library at the Citadel in Charleston. Items that you would easily recognize will be included in the exhibit: his ram's horn cane, his Citadel ring and one of his broad-brimmed black hats to name a few. The exhibit will be dedicated in the spring of 2008.
By now you are all aware of the grand news that Brandon Sanderson will be working closely with Harriet and Jim's staff to write A Memory of Light. Brandon has proven himself in the genre. Harriet, hand picked him for the task. I hope you are as pleased and excited as we that he accepted the challenge. As you will learn in Jason's interview, Brandon has long been a WOT fan. Now he has the privilege of donning the gleeman's cloak and telling us the ending of the tale. I am sure that he will do Jim's epic proud.
Remember my Brother/Cousin in the old familiar way. I miss you Bubba. Now, as Harriet has told us, Onward.
4th of 3
Brandon Sanderson came to see me for a couple of days this week, and he is as terrific as he sounds in the interview. I am really glad that things have worked out so that he can, and will, complete A Memory of Light. He will do a job that Jim would approve, I believe. And I'll be working with him throughout the writing. And so will Alan Romanczuk and Maria Simons, who have worked Jim through a number of books, and who are both now completely available for Brandon's support.
It is a great relief to have Brandon on board. This (choosing the writer to finish the series and getting the work launched) was the single thing I most wanted to do for my dear Jim. All the rest of the avalanche of stuff had to take a back seat—and there has been a lot that needs to be dealt with. So now I can deal with it—figuring out one colossal bad investment, dealing with the apparent collapse of the British literary agency (now apparently reconstituting itself), figuring out how to meet the payroll, all this mundane stuff. All will be OKAY, I hasten to tell you. It's just that it all needs to be dealt with, and that means TIME.
There is an e.e. cummings poem, I carry your heart, that you can google. [The poem is included below.] I did, and burst into tears. It tore my heart open and soothed it, too—because I do carry Jim's heart in my heart and I always will, until we meet again, which I hope and pray we will. When I said ONWARD I did not mean away from Jim. Not at all. I meant that we must always keep going, making, giving, loving, living, as best we can, through blizzard and desert. It is what we are called on to do. A friend wrote me at Jim's death, "the transition from love in the flesh to love remembered is endless and inconsolable" and oddly this was very comforting, because I believe it is true. It isn't the most important thing. The most important thing is to keep going, ONWARD, with his love, in his love. He loved you guys, too, you know, even if you never met him. How else could he have written these wonderful books?
So, hold him in your hearts and LIVE—it's what he wanted us all to do.
Greetings of the season to you all. And love. Harriet
i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear; and whatever is done
by only me is your doing,my darling)
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than the soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart
i carry your heart(i carry it in my heart)
e e cummings
On 8 March 2008, James Oliver Rigney, Jr. was inducted as the 47th member of the South Carolina Academy of Authors (SCAA) Hall of Fame. The setting was perfect, The Citadel, The Military College of S.C. The man most of you only knew by his nom de plume, Robert Jordan was a graduate of the Citadel and adored his alma mater. Jim would have loved the attention and been embarrassed by it. You see, he wrote not for acclaim. He wrote because that's what he loved to do. But every one of us likes a pat on the back and a "well done" from time to time. This ceremony was exactly that, a public affirmation of what we fans of Robert Jordan already know. Jim, aka Robert Jordan, has taken the world of fantasy to a level that was only a dream before. The long narrative is possible because of Jim. A writer in his genre was quoted recently for having said that we owe the likes of Harry Potter to Robert Jordan's Wheel of Time. Jim did not live to hear that line, he did however know that the SC Authors had named him to the Hall. He was informed of it at the beginning of September 2007. Jim's response, "I'll be there", for the ceremony. He lost his fight only two weeks later, but he left knowing that he'd had that pat on the back from his peers. For that, I am eternally grateful. Well done, bubba.
The evening was a celebration of Jim the man and RJ the writer. Mike Livingston, a Professor of English at the Citadel was asked to speak about Robert Jordan. He began with the first three lines from Beowulf. He detailed how fantasy has always been an important art, inspiring us all to choose the harder right instead of the easier wrong, to aspire for greatness and not settle for mediocrity. He wove a brilliant tapestry of fantasy through the ages landing upon our own Jim. R.J.'s impact on the genre will be felt for as long as man pens fantasy.
Marjory Wentworth, the Poet Laureate of South Carolina, was asked to speak of the man, Jim Rigney. She told of his mentoring of promising students. She recalled how he had seemed even more excited than she when she was named Poet Laureate. She talked at length of his generosity of education and his community. She remembered fondly his story telling, his singing and his most thunderous laughter. Marjory counted herself blessed for having had Jim as a friend.
The official words inducting Jim into the Hall were pronounced by D. Oliver Bowman, Chair of the 2008 SCAA Induction Committee. Our Harriet was radiant, a smile ever present. She worked her way through the crowd of over 150 making sure that she spoke with everyone. A special treat for her and all of us gathered were the "1st Graders", a group of 14 ladies with whom Harriet had begun school, that's right, in the 1st grade. There were 8 of them in attendance. They gather at least monthly to chat over lunch or tea. By way of acknowledging them, Harriet gave a Robert Jordanish, "Hoot Hoot", which brought laughter and an encore call. So, she did it again.
Linda Ferguson and Ellen Hyatt, SCAA board members, presented Harriet with a Memorial Gift, a clock. All felt it most appropriate for the Creator of the Wheel of Time.
The mood of the evening was light. Still as people talked of my Brother/Cousin, I was transported back to that horrible time in September. Perhaps the wound is like that in Rand's side, it may never heal. I do hope that it does, for I am sure that Jim would rather I remember the laughter, not the pain. That goes for all of us really. This night in Charleston, the Two Rivers made terra firma, the people gathered under the large oaks of Stedding Citadel, to sing the songs of praise to one of our own, James Oliver Rigney, Jr., who though passed will live in our hearts forever.
Brother/Cousin of the warrior god...
4th of 3
Family, friends and fans of fantasy gathered at The Citadel on Tuesday 8 April 2008 to dedicate a permanent memorial to my brother/cousin, James Oliver Rigney, Jr. This was a celebration of Jim's life and his work. I would be lying were I to tell you I was looking forward to the event. We had assembled only a few weeks earlier at the Citadel to induct Jim into the South Carolina Author's Hall of Fame. That evening had propelled me back to the awful moments in September when we lost Jim. Both Harriet and I were in dread of the same happening yet again. It didn't. Rather the opposite.
Harriet had told us all, Onward, still she and I (and I'm sure the rest of the family) were mired in that part of grieving that causes us to hang on, denial. Only a day before, Harriet had rolled up her sleeves and dove headlong into the first chapter of A Memory of Light. She, Jim's loyal staff and Brandon were hard at work on the book. She called me to share that and her excitement was obvious. She sounded like a new woman. Harriet told me that she finally knew that Jim wasn't coming back. That doesn't mean that she doesn't still hurt. The hurt will never totally subside, but now it doesn't interfere with going "onward". Indeed it helps to maintain purpose and focus.
Recently, I've been reading interviews that Mr. Jordan did before he died. (Thank you to those who have sent these to me.) I had already read some of the questions and answers, but others were fresh to me. I'm very interested in his comments as I want to make extra certain I don't miss-step and contradict anything he said in an interview, even if that information didn't appear in the books or the notes for the final volume.
I've found a lot of his answers very interesting. Among the more tragic are the ones that came when people asked him what would happen to his series if he died before it was finished. It kind of twists my heart a little bit each time I read a question like that, knowing what eventually happened.
In response to most of these situations, Mr. Jordan was joking and whimsical. Common responses were along the lines of "You'd better hope that doesn't happen, otherwise you'll never get to see that last ending I've been planning all these years!" He often indicated that he'd leave instructions to have all of his notes burned and his disc drives wiped, then reformatted six or seven times so that nobody would ever know how the story came out.
Humorous tone set aside, I see something in these responses. Inside, I think the concept of anyone else working on the Wheel of Time was very painful for Mr. Jordan. I really think that early on, he was against the idea of anyone else finishing the last book, should he die.
However, Harriet has talked to me of the last days before his death, and I also have transcripts of the final dictations he made. Transcripts that talk about what should happen, how people should end up, and how the ending should be written. The tone of these writings and of what Harriet talked about is very different from his earlier comments. It's humbling to see how he changed, instead becoming determined—insistent, even—that the last book be finished after he passed away. Harriet mentioned to me that he didn't want to select someone himself. That thought was too hard for him. I can understand why.
In the end, I see this as his last gift to all of us. As an artist, I can completely understand why he wouldn't want someone else to work on his world and his books. And if he had actually decided to leave instructions for the final book not to be completed, I am sure—very sure—that Harriet would have seen to it that his will was followed. But that wasn't what he decided. He demanded that this book be written. Even though I know that the idea brought him pain.
This was his final sacrifice and gift for you all—the decision to give us the last scenes and instructions for the book, rather than taking that knowledge to the grave with him. From what I've heard of the last months of his life, I know that he spent a surprising amount of time giving dictations, telling about places that nobody else knew existed, and explaining how the characters were to end up.
There are a fair number of people who are against this project happening in any form. They don't make up the bulk of the fan community; in fact, they seem like a very, very small percentage. There are others who aren't opposed to the book being finished in general, but who are opposed to me specifically working on it—though this group is even smaller than the first. Either way, I can sincerely understand both complaints. It seems to me that the Robert Jordan of five years ago would have been in the first group himself!
I have repeatedly acknowledged that I can't replace him. But he wanted this book done, and I'm increasingly confident that I'm the best choice for this project. There are plenty of fantasy authors out there who are better writers than I am—George Martin, Tad Williams, Neil Gaiman, and Robin Hobb all come to mind, among others—but I don't know of another author publishing in fantasy right now who has been as close to these books and these characters as I have been over the last eighteen years.
Knowing that Mr. Jordan was distressed about the concept of anyone finishing the books makes me even more determined to write a book that he would have been—that he will be—proud of. He loved you all very much. Those who complained about the time he took to finish books, or the length of the series, did not know the man at all. He did not write this series to the length he did because of money; he did not 'artificially inflate' the Wheel of Time because of any external pressures. He wrote this series the way he did because he loved it, and because he knew that we loved it.
And I think that's why he chose to have this novel completed. In the end, your good was more important to him than his own good. What grander summary could be made of a man's life than that?
This book is going to be beautiful. I promise you that.
When bestselling author Robert Jordan died last year from a rare blood disease, fans of his popular series, "The Wheel of Time," braced themselves for the possibility that his 12-book fantasy world would end one volume shy of completion.
Before his death, Jordan, whose real name was James Rigney, Jr., signed over the book rights to his wife, Harriet, and requested that she find a capable author to finish the series for his fans. After his death, a eulogy posted on the website of Brandon Sanderson caught the attention of Harriet Rigney, and a successor was named. Rigney announced that Sanderson, a 32-year-old fantasy writer from Provo, Utah, would complete the final book, slated to be released in 2009.
In 2006 Rigney announced that he had a rare medical disorder called cardiac amyloidosis, caused by a build-up of amyloid protein in the heart. The average life expectancy for someone with his condition was four years. In that time, he would do his best to finish The Wheel of Time saga with one more book. Eighteen months later, he was gone.
The first real indication that something was going on manifested itself in October 2005. He was on the last signing tour in Philly and took a day of private time and visited with my family at West Point, where my youngest son was a freshman. We did a backyard barbeque at a buddy's house who was stationed there at the time and Jim inhaled the biggest steak you've ever seen in your life. It was a good day. And, sidenote, when Harriet and Jim left, a buddy of mine who I graduated with back in 1974, who was at that time the parish priest at West Point, said, "Oh man, Will, I'm glad they're gone." And I said, "Why?" He said, "Those are the smartest people I've ever been around. It's hard to talk to them." He was laughing, and he said, "They stretch you, don't they?" I said, "Yeah, they do."
Anyway, West Point is located in an area of New York, the central Hudson valley, that is all hills. And him walking around, he'd have to stop occasionally and lean against something, or lean down on his knees and catch his breath. And he'd get dizzy, and see spots. We realized that he needed to get this checked out. It was within a week or so after getting back from the tour that he called me and said, "They know what it is." And I was thinking it was something not as catastrophic as it turned out to be. You know, maybe he's not eating well, not enough sleep, something. So I say, "OK, what is it?" And matter-of-factly, he says "It's amyloidosis, and it's fatal, and I intend to beat it." Just that way.
He thought he had seen it then, but in fact he had seen it years earlier when we were doing a walk in the Charleston area, across the Cooper River Bridge that they do annually. I reminded him that, on that walk, he had some breath issues. He thought about it a moment and said, "Ah, you're right." And the moral of that was that amyloidosis, which is now on everyone's radar, is because of Jim, and the work Harriet has done since losing Jim. The V.A. now recognizes it, it is service related, so servicemen can be checked. It is being taught to doctors early on, so when they are looking at patients and they are talking about this or that symptom, and they see something that looks like a common cold, it may not be a common cold. It may well be the onset of amyloidosis, and if it is caught then, it is treatable.
So Jim told us then, "I intend to beat it." He didn't know that he would personally succumb to it, but in fact, through his efforts and through his notoriety, he is going to beat it.
The skinhead look seems to meet with a good bit of approval. Should I adopt that? Get the salamander tattoo and arrive at signings on a Harley. Fat Boy or Soft Tail? Not one of those new ones that try to look like a BMW, though. Maybe I should just go for a Japanese crotch rocket and blow into town at 200 mph. Well, even those need a little work to hit 200, but they'll leave a Harley in the dust for sure. No hate mail, please. I love Harleys, but I needed to go really fast, I'd be riding Japanese or Italian if stock.
Some of you seem a little confused over what I mean by a salamander. My walking stick for black tie has a silver head which most people think is simply a lizard with malachite eyes. Only close observation will show that the lower half of the lizard is actually flames. The salamander, the lizard that lives in fire. The ancients believed that asbestos was salamander skin, that salamanders were fire elementals, and even that salamanders were the guardians of the gates of hell. In any case, they have always been seen as symbols of survival under adverse conditions, able to walk through the fires of hell unharmed. Of course, a group of us were going to get salamander tattoos during an R&R in Hong Kong. I was too drunk to make the appointment, and I was the only one who made it back to the world, but I figure that was coincidence.
An aside. When I speak of so many million stem cells, that refers to that number per kilogram of body mass.
For Child of Lir, most hospitals by far in the US do not have wifi or first run movies. The Mayo Clinic is most definitely top drawer.
For Doctor, I've pretty much settled on channeling, if that is the proper word, myself. It seems to work. Although that first day, at lunch, I did slip briefly into Brando from Apocalypse Now, and I must say that afterward we could carry on a pleasant conversation at our table without any bother from brainless chatter from tables around us. I may keep that one in reserve.
That's about it for now.
Remember guys, Illegitimei no carborundum!
To Lynn, I'm sorry I missed you while you were here in Rochester. One of the nurses, Ken, told me that another SCT recipient was on the floor for a visit while I was getting my transplant, but not that you were a fan, or I'd have asked to see you. I'm sure they would have let you mask up and come in, if masking was even necessary at that point.
We had a really great day together this past Saturday. Our dearest Harriet insisted that the boys needed to visit the local Harley shop to procure do rags for our chrome domes. RJ entered the showroom of gleaming road-ready American icons with a thunderous, "Holy Mamma! We're in Church!" Stopped people dead where they stood he did. Janet, my love and shade of my heart, found a camouflage do rag which the Vietnam Vet thought fit him most nicely. Then she happened upon a black rag with a luminescent blue pattern on it. She showed it to me and I announced that they were dragons. RJ's head popped from around the opposite side of the display and he queried quite like we were still adolescents, "Dragons?" Two left the shop and were soon upon our heads. Oh we did kick tires and discuss at length the merits of this or that bike. I longed for the Classic mid life comfort bike, bedecked of faring, chrome, CD player, et al. RJ offered that I might as well be riding in a car. In the end I think we were both eyeing the Soft Tail. But our favorite was the Fat Boy in a very stealthy new matte paint, Black Denim.
All the rattling about the Do Rags is for a reason. You, his loyal fans and supporters, know that this world that you so love has sprung from that amazing mind of his. Rand, for all his heroics is but a figment of my dear brother's imagination. RJ on the other hand, is now and has always been the Dragon. Seeing him wearing his dragon bedecked do rag only refocused me to that fact. When he called me with the news of the disease, he announced with calm resolve that it was there and that it was fatal. He also vowed to beat it. Heroes do that you know. He has shared the amyloid ordeal most openly with you all. Read between the lines of his postings and you will see that this was no small struggle. While he is setting all manner of records for an amyloid patient, we have yet to learn if the amyloids are truly gone for good. Time will tell. Pray, as I do, that they are. Dr. Hayman is truly of the Yellow Ajah. But, the medical treatments required to vanquish this unseen enemy damned near kills the patient. Thusly, RJ is back from near-death and reborn to us. Fantasy is just that. Reality is much more inspiring. I am here to proclaim loudly to all of you that my brother-cousin, my confidant, my friend, is indeed the Dragon Reborn. Long live the Dragon!
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 lose 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,
He was not well on our final book tour, which was Knife of Dreams. He failed to receive a diagnosis until after the end of the tour. This is true of the disease amyloidosis in general. By that time his heart had received so much battering from the disease that it was simply failing. And it took about a year for that to happen.
It was so sad. I mean, he was a friend; I took it personally, and he was a brilliant, epic storyteller. There was nobody like him, and it was a terrible loss.
He had spoken publicly before that, that he would destroy anybody who tried to work in his universe, and he would sweep his hard disk three times to make sure that nobody could ever get anything out of it, but in his last weeks, he was telling us what needed to happen.
He wrote these very detailed notes. He dictated passages in the beginning and the end of this last book, and Harriet knew he wanted this series finished.
In 2005, Wheel of Time author Robert Jordan was diagnosed with a fatal blood disease, disrupting his plans to finish the beloved series. With his fans in mind, Robert Jordan worked diligently through his final days, writing outlines, notes, and manuscripts so that his masterwork could one day see completion.
His fans—the people who had stuck with him all these years from 1991 on—deserved closure. And, he had created an outline which gave them closure, and he wasn't able to finish it himself. We wanted Jim's story to be told.
A friend was staying with me in the week after Jim's funeral and put a print-out in front of me and said, "I think you need to read this." It was Brandon Sanderson's eulogy for Robert Jordan. And it was—it was beautiful. Such an expression of love for the books and for Robert Jordan's work. And it ended, "Mr. Jordan, you leave us silently, but you leave us trembling." And I thought, gosh, this is the attitude I would love to see. Brandon at this point was a published fantasy writer, so I called Tom and said, "I want one of his books to read." His world, his people, his conflicts were all clear in my mind. And I called Tom, and said, "Tom, I think this is the guy."
And she picked Brandon. And we're just delighted because we think nobody could have finished it as well.
I had no idea how to react to this. I could barely talk when I replied to Harriet. In fact, I sent her an email the next day. It said, "Dear Harriet, I promise I'm not an idiot." Because I couldn't get out words. Yes, I wanted to be involved in the Wheel of Time. No, I didn't think anybody else could write the Wheel of Time. What do you do when you're in that situation?
We met in December, and I picked him up at the airport, brought him back, and said I've got some hot soup on the stove. He said, "I'd rather have the ending if I could, please." [Laughs]
Which I sat in his chair and read, well into the evening that night.