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DRAGONMOUNT

A WHEEL OF TIME COMMUNITY
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Guest Robert Jordan

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spigots or caudrens  

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  1. 1. spigots or caudrens

    • spigots
      24
    • caudrens
      23
    • pie spoon
      45
    • washer woman. shaped washer.
      28

Some of you don't like my striped shirt, and some don't like the braces but you'll have to get used to both, boys and girls; I like stripes, this simple red-and-white isn't even close to one of the full-bore stripes. With French cuffs. As for the braces, I adopted those some 20 years ago. A tailor in London was marking up the waist of a pair of trousers when I commented on the fact that I had trouble with trousers sliding down...and off "Sir has no shelf," he replied, and I realized he was right. I have very little behind. Hence the braces. Though I will admit that I have to go get these trousers taken up. When I bought them, I weighed approximately 30 pounds more than I do now.

 

I am sleeping about 20 hours a day, and feeling ready to go back to sleep as soon as I wake, but I feel good enough to try bringing you all up to speed on how things have gone. Some of this will be repeat work, so bear with me. Those who've been there can consider it a recap with maybe a little extra that wasn't there before. No jokes in here, or not very many. Just the straight ski-nay.

 

The first symptoms I am aware of occurred last Memorial Day. I was on my way to a charity fund raiser when I suddenly felt light-headed. I was afraid that if I did not stop, I would fall over, but since I was crossing an asphalt parking lot and didn't want to fall on the hot asphalt, I decided to keep going until I reached the grass on the other side of the street. I got there, but along the way, buildings began to glow white and everyone I could see acquired a nimbus. I made it inside, paid our entry fee (total elapsed time about 1 minute) and sat down for a while until I could join the festivities. A weird occurrence, but I paid it no further attention.

 

Exactly one week later I was in the lobby of the theater showing Spamalot, five minutes to curtain. I went light-headed, and then I went blind. This lasted for about 3 to 5 seconds. [The blindness has not reoccurred, but I have not driven since. Three seconds of blindness at 80 is nothing I want to fool around with.] A lot of people (exclusively women) have asked why I didn't go to the ER. The men I have talked to, including every male doctor, has understood. On the one hand, a night waiting in an ER and on the other, five minutes to curtain for Spamalot, original cast. A no brainer.

 

Still, on getting home, I went to my doctor, and she set up a full neurological work-up, a full cardio work-up, a full pulmonary work-up, everything she could think of. I aced them all. The techs started frisking me on the possibility that I was sneaking in a ringer. No ringer, but golden test scores.

 

Then I went on tour for Knife of Dreams. I came home expecting to be five or six pounds up from where I started (3 meals a day in restaurants for five weeks), but I was nine pounds up. My cardio man put me in a Halter Monitor, which you wear 24 hours a day and which records pulse rate, blood pressure, and a mini-EKG. This showed that I had an irregular heart-beat with roughly 1.5 second gaps plus low blood pressure. When low blood pressure combined with a downward spike in the BP, the result was light-headedness.

 

The doctor told me to load salt, and it was a good thing that he did. First off, I put on 15 pounds in 2 weeks. Then I had an episode of light-headedness while seated, which had never happened before. Harriet insisted on calling the doctor, who said to meet him at the University Hospital immediately. I was check in with what turned out to be congestive heart failure, a buildup of fluid around the heart. Once I was put on lasix, I lost 35 pounds in ten days. I also was seen by Doctor Zile, the head of the cardio department, because my cardio man had just gone on vacation. It turned out that he was med-school buddies with a man named Gertz, who is the #1 man in the world on amyloids. The result of that was that I was tested for amyloids (bingo!) and aimed at the Mayo Clinic.

 

Now, we're going to skip over a few things in here -- my first mini-dose of chemo, two hospitalizations with dehydration, fever and chills so bad that it was taking me three or four attempts to grasp my reading glasses, etc. The reason I've taken you step by step this far is that I got my first symptoms in May, my first diagnosis in December, and a confirmation of that diagnosis in January. That isn't just fast, in the world of amyloidosis, it is blindingly fast. Many people take 3, 4, 5 or even 6 years to get to that diagnosis. I intend to start a small foundation aimed at educating GPs primarily. At the Mayo, they say that by the time they get an amyloidosis patient, said patient has been beaten up within an inch of his or her life. It shouldn't be that way. I got lucky, but it shouldn't depend on luck.

 

Okay. Back to the rendition.

 

After roughly a week of testing to see whether I was a viable candidate, they decided that I was. Then I began bone marrow stem cell collection. I was able to collect 9 million ml/kilogram of body mass, which I though was very low. They will do a transplant with a few as 3 million per kg body mass, but they don't like going below 4, and they will not, can not, go below 2. I had been hoping to hit at least 12 million and preferably 16 million or even 20. Not until it was over did they tell me that people with amyloidosis often have trouble harvesting 4 million, and some can't make the 2 million.

 

After this came two days of chemo. The drug used is melphalan. The old fashioned name is mustard gas. Yeah; same-same World War I. On each of those two days they give you just short of a lethal dose of mustard gas. There is nothing haphazard about this. They calculate exactly what it will take to kill you and stop just short of it.

 

This is the point where I got my hair cut the first time. You see, movies notwithstanding, if your hair does fall out, it comes in chunks and patches, not smooth sheets. I figured I'd keep control of what I could keep control of and had the barber do me with a razor.

 

On the third day, called Day 0, you get back some bone marrow stem cells. Your appetite has already gone away by this time, but you haven't really noticed it because you've been hooked up to an aphaeresis machine for stripping out the stem cells. If you were a non-amyloid patient, they would give you more injections of growth factor, they same stuff they gave you to make you produce extra stem cells in the first places. Not if you are an amyloidosis patient, in which case the growth factor can make you put on 30 to 40 pounds of fluid in a day, in which case you are hauled off for congestive heart failure. This while your blood numbers (white blood cell counts, platelet counts, red blood cell counts etc) are headed through the floor. Not a good thing, as they say.

 

I've said that your appetite goes away during this, but this isn't a matter of just hunting for what you'd really like to eat. You don't want to eat anything. Nothing. Your favorite food? Forget it. You try to force something down, try to get some calories down. Protein powder, whatever, you choke it down. Only it still isn't enough.

 

I went to the Mayo weighing 240 pounds, and that was 6 pounds lower than my trainer and I had established as my dry bottom weight. This morning I weighed 217 for the second morning running, and I am ecstatic. I didn't loose anything.

 

I'm very grateful to those of you who sent Harriet a care package. More grateful than I can say. She showed it around, laughing sometimes. And sometimes crying. You see, she's still afraid she could loose me. We won't know whether any of the treatment did any good for at least six months, and probably not for a year. Until then, we hang on and fight. Her as much as me. She's my whole corner team, cut man and all. Leaving the Mayo wasn't the bell to end the fight. That was the end of Round Five, and Liston made it a nasty one. (I've alluded to it earlier, and I'll let it go at that,) But I beat him back, got inside his rhythm by the end of the round. Is he ahead on points? Am I? I don't know. I just know we're fighting by the old rules. None of this 12 round kiddy stuff.

 

"Welcome to the Garden, Ladies and Gentlemen, for at least fifteen rounds of cham-pi-on-ship boxing. By prior agreement, this fight cannot end in a draw. The match will continue until one opponent either cannot come out of his corner to answer the bell or cannot answer to the mark by the count of ten."

 

(And we got one of Marciano's old refs, so don't worry it's going to be stopped on cuts. This guy figures if you step into the ring, you expect to bleed.)

 

Anyway. The pictures are not for life-style options. When I can grow the hair back, I will. The goatee may stay, but not the shaved head. The tattoo, maybe. The Harley? Oh, yeah, I'm pretty serious about that. Harriet seems to leaning to riding postillion.

 

Well, that about wraps it up for now. I'll be back to you in a few days.

 

Take care, guys.

All my best,

RJ

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Guest Courtney

Posted

I'm glad that you've made it through Round 5. You are a strong competitor, and I know that you will keep fighting. As a Registered Nurse, you are the type of patient that I think has the best chance: one with a good attitude that plans on kicking the diseases butt. Keep it up! I'm rooting for you! :)

 

~C

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Guest Todd Jackson

Posted

Mr. Rigney,

Long Time Fan, first time commenting. Please know that you and Harriett are in my family's prayers. I appreciate the courage you have, everyone can see it when you are smiling in the pictures. I also wanted to let you know that your courage in defending our country is appreciated. I was a small child when you were in Vietnam, but I had 2 uncles over there and a nephew in Iraq now. And I shake every veteran's hand and tell them thank you when I see em. Again, I will be praying for you and your lovely wife, I can see she is as much an inspiration to you as mine is to me.

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Guest The Grey Jedi

Posted

Show 'em how it's done, RJ, the amyloids shall know defeat at last!

 

~The Grey Jedi

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Guest Aage

Posted

Dear Mr. Jordan.

 

First of all I would like to say I am a great fan of your books. Not only the Wheel of Time but also the Conan books that you have written.

 

Having that said I would like to give you my support in the fight against your illness.

 

Best regards

Aage from Norway

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Guest Carl Anderson

Posted

Dear Mr. Jordan,

 

When my wife Robin was pregnant with our daughter Anzia eight years ago, the first few months were very touch and go. Her doctor told her that she would have to take it easy if she was going to keep the baby. Understand that my wife is very, very energetic and active, and taking it easy is contrary to her nature. However, I gave her a copy of The Eye of the World (which I had just read), and over the next few weeks, as she read through all seven books then published, Robin did in fact take it easy, and she was ultimately able to carry our daughter to term.

 

While I'm grateful for you for writing my all-time favorite fantasy series, I'm also grateful for the contribution that your books made to my then-unborn daughter's life. Because of that, I have kept you in my thoughts during the past several months. Both Robin and I wish you a full recovery.

 

Anzia, by the way, loves reading fantasy novels . . . I can't wait until she's old enough to read all of the Wheel of Time books, from The Eye of the World to A Memory of Light!

 

Thanks again. I hope you're feeling better soon.

 

Carl Anderson

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Guest Kenda

Posted

Just wanted to say that I am praying for you! I became a fan of yours when I had cervical cancer in 2000. I was 20. My boyfriend gave me The Eye of the World to read to occupy my mind and time. I was hooked from that day forward. Your books helped me get through my hard times...I cannot express how much that means to me. Thank you for that. Anyway, good luck...your fans are in your corner. We love you and your work.

 

P.S. Harriet...hang in there...it will get better.

 

-Kenda

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Guest Wendy Rose

Posted

Dear Mr and Mrs Jordan

 

A wise man once wrote "Not everything that is faced can be changed, but nothing can be changed unless it IS faced." Thankyou for having the courage (1) to face your challenge head on and (2) to share your journey.

 

Re-reading WoT (I read the whole series when a new book is due) helped me through the dark days after my husband of forty years woke from the dream.

 

My prayers and positive thoughts are with you both at this time. But then, you have beaten this thing, haven't you! So you don't need them.

 

Wendy

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Guest The Australian psyco

Posted

I'm mildly less evil than my name suggests-mildly- but I have a very random rhetorical question/comment.

Is it just me, or do you -Robert Jordan- seem to like giving the girls the most interesting parts?

First theres Aes Sedai, but also Madiens of the spear, wise women, Only a woman ruling Andor, Elayne getting female guards, the most evil forsaken being (in my opinion) the girls, (my personal favourite) Min, who dresses in men's clothes but also seems to have the most control over Rand, and no doubt a whole lot that I can't remember and will need to re-read the books to find, as I'm a little out of it today. Very few books with male main characters, if they can be called that considering the depth you have, and so much femenie power. YAY! Go girls! Let three out of four of Aviendha's children be girls! (when she has them) Thanks for giving me my warped say, and goodnight, or morning, or whatever it is in the Land Of The Free But Not As Cool As Australia!

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Guest Niran

Posted

I wonder why this young Robert Jordan was hiding behind that great, old-man beard. :)

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Guest Martin

Posted

Dear Mr. Rigney!

 

Best wishes to you and your wife from Germany. I hope you will get well soon.

 

Martin

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Mr. Jordan,

 

My mother is actually going through the same procedure that you are. She has myeloma, which is a cancer of the bone marrow. She did her stem cell collection during the first week of May, and was forced to wait on the chemotherapy because of her low red blood cell count. We're hoping that she will start chemo next week.

 

Good luck to you in your recovery, and good wishes to you and your family through this difficult period. I'm glad you posted about your therapy; it provided comfort, so thanks.

 

Joe

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Mr. Jordan,

 

It is so nice of you and your family to keep everyone posted. Even though most of us have not met you, we feel like we have gotten a good peek at your heart and soul through your wonderful books.

 

By the way, 246 pounds as your ideal body weight. You must be Perrin sized!

 

Best of luck!!

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Guest Rachael

Posted

First of all,

Your post left me speechless and I had to come back the next day to reply to it

I’m sure by now you're sick of the words awesome, awe-inspiring…or anything else with ‘awe’ in it

Having millions of fans feeling it is great, but have them all post it (I admit; I am as guilty as the rest of them)

So moving right along, a spoonful of sugar for you:

 

Heaven playing sports

St. Peter and Satan were having an argument one day about baseball. Satan proposed a game to be played on neutral grounds between a select team from the heavenly host and his own hand-picked boys.

 

"Very well," said the gatekeeper of Heaven. "But you realize, I hope, that we've got all the good players and the best coaches."

 

"I know, and that's all right," Satan answered unperturbed. "We've got all the umpires."

 

:)

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Guest eric

Posted

best to you, sir. neither this world nor the one you created wants to let you go.

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Guest Linda Pardue

Posted

All I can say is 'ouch ouch and ouch'. I hope that from now on mustard is only associated with food!!!!!! To nearly die to be cured - again, ouch. Most get at least a little downtime between treatments - that was too drastic a rollercoaster ride!

 

 

I hope and pray you heal quickly, well and permanently!

 

Blessings

LKKP

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Guest Arje

Posted

Dear RJ and Harriet,

 

Great to hear that things are progressing well and that your attitude is exactly as it should be: always positive and never giving up. We've gone through a similar process with on of our own and have always remained positive- it has now been 8 years and we're still fighting.

 

As a rider, I certainly understand the Harley thing (even though I ride a 'crotch rocket') and highly recommend it. Nothing makes you feel as alive or as free - just you wait and see....

 

Thank you for the WOT and the many days of entertainment you have provided for all of us.

 

I wish you and Harriet all the best and hope for a speedy recovery.

 

Arje

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Guest Tyler

Posted

You have my thoughts

 

 

Tyler

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Guest Liam

Posted

Dear Mr Jordan,

 

I can only echo the sentiments of all the other people who have responded to your blog. I really hope you make a speedy and full recovery and the process is not too awful.

 

I was interested to read that you had suits made in England, that tweaked something: you seem to have a remarkable grasp of regional English dialogue and traditions, whether it's "pasties", "meat pies" or "lifts" the list is almost endless. I am from the North of England and you use phrases that I only hear from native speakers of that area, never mind other English people. I mention this for a reason, like the characters from your books the use of such dialects really touched me, it echoed my granparents' language and evoked feelings from my past. The Wheel of Time it seems is more than just a fiction as I you made my own ancestry resonate in me.

 

Thank you. Thank you very much.

 

Kindest regards, and the very best of wishes.

 

Liam Hemmings

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Guest Chris

Posted

From one old fart to another: "hang-in there, good luck and God bless!"

You got me hooked on WOT 18 (?) years ago when I bought what I thought would be a quick read in between serious (history, etc...) reads; and, I have kept reading (over and over again) since then, eagerly awaiting each new book. Get better, let the writing wait, concentrate on getting better!!

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Guest Eveliina Jaurakkajärvi

Posted

Dear Mr. Jordan

 

Greetings from Finland. I was very sad when I heard of your illness. Most of the things you described went over the top of my head, although I am going to be a doctor in future (quite distant future still) , because there is a language barrier between. I hope you'll recover. Concentrate on getting better, writing can always wait. I love your writing, Wheel of Time is my favourite of all time, it is the best thing I have ever read anywhere. I've read it in Finnish and in English. And I love it, as I said. Greetings to Harriet, too, and strength for you both. Get well soon. All your fans here in Finland are rooting for you :)

 

Sincerely,

Eveliina

 

PS. Sorry about all the writing mistakes I must have done ^^

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Guest Shawn Bradstreet

Posted

Dear Mr. Jorden

 

I just found your blog today and what i have read brings even more respect from me to you.

You are a brave man and the best author ever!!! Please get better and continue to be great.

 

your fan, shawn

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Guest jacky

Posted

Oh,what a beautiful blog! I like it very much! I'm agreeable to your point of view!

my name is å应釜 I hope to make feiends with you !

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