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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

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    • pie spoon
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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 Chad

Posted

Glad you are doing well. Good luck Mr and Mrs Jordan.

as they say here in Korea "Fighting!"

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Guest Leopoled Booth

Posted

Dear Mr. Jordan,

 

First off I just want to say thank you very much for sharing your wonderfull "Wheel of Time" series with the me and with the rest of the world. I first discovered your work, quite randomly, in 1993. I was captivated by "Eye of the World" and tore through it and each subsequent volume and finished "The Fires of Heaven" litterally within a week of the release date of "Lord of Chaos." I had no idea at the time when book six was to be released so you can imagine my excitement when I walked into the books store within days of finishing Fires and saw it sitting on the best seller rack (It was, of course in the #1 slot). I flew through Chaos and have anxiously awaited the release of each sucessive book, though really I don't mind the wait much as it gives me time to reread all my favorite WoT books. Ok, but enough with the babbling :)

 

Secondly, I want to thank you for taking the time to keep we, your loyal fans, updated on your condition. I don't know if you are a religious man, but I for one strongly believe in the power of prayer. It gives me great hope knowing that there are so many people out their praying for you (myself included), however, your situation has also reminded me that there are many people in the world who are ill and have no one to pray for them. Thus, this whole ordeal has inspired me not only to remember you in my prayers but to remember them as well.

 

While I hold prayer as the paramount I do also believe in the power of the all mighty dollar. Some would say that money is the root of all evil and to his I can only say, well perhaps but like anything else money cannot take root unless it sits in one place for too long. Therefore, money can bring a great amount of good into the world if we are willing to spread it around. Ok, so what is the point of all this? Well, I'm just trying to say that I know from what I have read here on "Dragonmount.com" as well as from talking to other fans that your ordeal has indeed spread awareness of amyloidosis and has inspired many to donate to amyloidois research. So, I hope you can take some comfort in knowing that some good has come out of all of this.

 

I hope and pray that you will feel better soon. Keep up the good fight and know that I will be in the stands routing for you all the way. I would like to be able to say that I will be the one routing the loudest, and I certainly will give it my best shot, thought I know I will have alot of competiton for that honor. Give my best to Harriet, Wilson, and all your brothers and family. They will be in my thoughts and prayers as well.

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Guest Linda M

Posted

Dear Mr. Jordan,

 

It is so good to hear from you! All us fans really appreciate you taking the time to let us know how you are doing. Please know my thoughts, prayers and strength are being sent to you and to Harriet.

 

Linda

 

PS Keep the stripes and the braces!

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Guest Adam

Posted

Good to hear you are in much better condition than you could have been, all things considered. Happy to hear it indeed! That said, i'm calling "What not to wear." They'd do you a treat. A wardrobe makeover, a little facial scrub and maybe a manicure and you'd be 'hella pimp.' That's 'teenage-ignorant-moronese' for stylish. You'd have to give your wife a bat to beat away all the floozies trailing you in the streets.

 

Hear's hoping you can fight like a bikie in addition to looking like one! Oh, and remember, in this fight, you don't get disqualified for punching in the kidneys or biting ears and whatnot.

 

cheers.

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I totally thought you were not posting because you were out cruising the Harley with your beloved Harriet! I must admit I was worried about you Mr. Jordan, when I first heard of your unforunate condition, I had just started getting into your blog, which I totally enjoyed. I wish I was one of the fans who have been with you from the beginning but, I must say that I started reading your series when I was medically discharged from the US Army in Feb 1999. My Father had been on dialysis due to Diabetic complications for about a year when I returned home in 2000, I would often find myself awake with him at 4:30 in the morning as he awaited transport to the dialysis center for his early morning treatments. I would wake him at about 4:15 am every morning for transport and wait for him to return home about 8:00am the same day. It was those hours waiting that I began reading your series. I quickly devoured each book, unfortunately my Father passed away in Feb of 2003, but earlier that summer I was diagnosed with Diabetis. I say this only because I know what it is like to faced with that which could end your days on this earth. I loved my Father dearly, as did my sisters and brothers, he was indeed a very special man, to his family and to the community.

 

So when I heard of your illness, I immediately began a daily vigil of checking for a post from your blog.

 

Same as I did for my father. I didn't mention it before, but I changed his bandages, and cleaned his infected feet on a daily and then every other day basis. I am Native American, born and raised in Northern Minnesota, I currently reside in Virginia because my husband, enlisted US Army is stationed here. He is currently deployed to Iraq and I am here alone, with my 2 children, Erik and Andie. I patiently awaited Knife of Dreams here in Virginia. I am a fan and have been since the last days of my father, and i hope to be a fan of yours an Harriets for many years to come.

 

I miss my father dearly and dream of him ofen, I hope that for many years to come I will be able to read your blog, learn of the success of your beating your illnessess and any thing else that stand in your path of sharing your life with Harriet and your many fans on this Earth.

 

 

My father succumbed in 2003 to complications due to diabetis because he thought if he had surgery the doctor's suggested he have he would be able to live 3 to 5 more years and be able to give to others in his family and community taht much longer. Unfortunately, he did not survive long after the surgery. I think of him every day, as I am sure my sisters and brothers do as well. I believe there is a time and place for all of us to depart this earth and leave our loved ones behind. I believe that time is not upon you now Mr Jordan, I wish you and your family many happy years.

 

Very Sincerely,

 

SEA A Jones

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Guest Chris

Posted

Mr. Rigney,

 

We fans really appreciate one of our favorite authors being so open and honest with us. I've been reading your books since I stumbled across The Great Hunt during my freshman year of high school, and i have been a die-hard fan ever since. I may not have any of the amazing survival or memorial stories as some of the other posters, but please just know that you are in our hearts and in our prayers. We all worry about you, and pray for nothing but the best. Get well soon.

 

Chris

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Hey Jim,

 

Just to say you are the coolest guy. You're going through so much and yet spare the time to console and encourage your readers. Thank you for all your efforts and I sincerely wish you and yours all the strength in the world to get through this rough time. We know you can beat it...

 

All the best

 

M!n

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Guest Wind

Posted

Hi

Did you get to see the cool 'Dragons: A Fantasy Made Real' Show on Discovery? I saw it this evening and it made me think of you. Keep your talons up!

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Guest Egwene

Posted

Thanks for the update *smile* ... as someone else was saying... we do get worried about you when you've been quiet for a while.

 

Looks to me that maybe the early diagnosis might have given you a slight advantage in this fight. Maybe those guys with the very low stem cell harvest were diagnosed late? The fight is not over yet... but I think you look to be in better shape than some of the previous combatants at this stage. Hopefully you are able to take courage from that.

 

Wouldn't it be great if someone developed a medical website where people could put in all there syptoms and it would give them results of what it might be in descending order of matches. I don't know if medics allready have such a tool at there disposal... if not, they really ought to. It is obviously not possible for them to know all the symptoms for all the illnesses there are, espescially those conditions which are rare.

 

I had problems sometime ago and I was able to work out what was wrong with the help of hours spend searching the Net. The diagnosis was eventually confirmed by the consultant. However, the sum total of his advice was 'live with it'. I decided I didn't want to... trawled the Net again... and now due to dietry advice given to people in other countries, I have been able to keep my illness under control (fingers crossed).

 

I wish you every success with your campaign to raise awareness... I certainly won't forget the disciption of symptoms having read them here.

 

Lots of love as always to Harriet!!

Egwene

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Guest NaClH2O

Posted

Thanks RJ, for all the trouble you've taken to keep us informed. It means a lot to me (and I assume other fans too) that you've taken the time keep us up to date. Congratulations on your early(ish) release from Mayo, and your early diagnosis seems just short of phenomenal. Good luck on getting the Fat Boy. After the guys in the back shop hook it up so that all is seen of RJ and Harriet is a black streak along the SC country roads, you should get your tank decorated with some red and gold dragons. That way us poor mortals will get to see a black streak with red and gold highlights. You can then name it "The Black Dragon".

 

NaCl(sending "WELL" wishes to the universe)H2O

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Guest Michael

Posted

Hi Mr. Rigney

 

I am glad that you are feeling better. Some of us who are working too many hours might even be envious of someone who can sleep 20 hours a day :) I hope that you continue to recover well, and when you are asleep, that you dream only wonderful dreams. I look forward to your next post.

 

Sincerely,

 

Michael Kibbe

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Guest Jennifer

Posted

Amazing. I fell upon this blog, as a previous writer did, with the intent of discovering some information about the series that has captured my soul. ( I'm not just trying to polish your newly-bald head, either!) I have always been an avid reader of books. Any type...with the exception of 'science fiction' or 'romance', that is. I had been through college and grad school, never really knowing what I really wanted to do in life. After being a stay-at-home mom for 5 years, I realized my brain was tired!! (ever try and argue logic with a 6 yr old?) I wanted a job that I wouldn't hate going to. After the boys were in school, I looked around and decided that EMS was for me! My family thought me insane, but I went to school, and became the happiest little EMT-b you ever saw. I loved my job. The 24-72 hr shifts didn't really bother me, and actually worked out with my husband's schedule, so life was good. Went on to become a paramedic, and found my niche. I was finally making an appropriate salary in a field where I felt truly fulfilled.

As with all things that seem to good to be true...it was not meant to be. My brain was willing, but my flesh was not. I had to leave the field officially due to CRPS developing in my right hand. I had been able to continue through a lumbar spinal fusion and thoracic spinal problems, but my right hand betrayed me. I suddenly had a lot of time on my hands and reading was just about the only thing that could distract me from my mental, physical and emotional pain. I was chatting with an on-line friend who had been through a similar test, and also read...alot! She told me of this really incredible series she had read, and suggested it to me. I heard 'science fiction', and thought 'oh yippee', but I picked up the title anyway. One day, the pain was so bad, I was getting physically sick, and had run out of the stack of 'good books' and decided to give "WOT" a shot. By the end of that book, my world-view had changed. Not only did I have to have the next book in the series, I had to have the one after that, just in case I finished early...couldn't go without, you know? My long, sordid point is that your world has helped me through mine. I was able to relate to the pain of the characters, and recognized the reality of it, as I was in the midst of it myself. I realized I had given up on trying, as is so easy to do. I have been through multiple procedures and feel more like a pin-cushion every day! It was a rough 9 months. Like yourself, I have a condition that is under-exposed in the early stages, and mine is called Ehlers-Danlos. At the tender age of 36, I am just about totally disabled, because no one knew what to look for when I was younger. I was a hypocondriac, or just plain crazy. Now, I know the truth and can fight to keep my son from the fate I face.

I came to this site to tell you that you had helped me through, but it turns out you have helped me again. Blessings to you and your dear Harriet! It is often harder to see someone you love going through something than going through it yourself. Strength to you, as well.

Just amazing. Thank you.

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Guest sithdad

Posted

Dear RJ,

It would seem that about the same time you experienced your first symptom I had my first introduction to the WoT series. My father and I travel to local businesses and set up book fairs. At first we got in a few copies of Crossroads at Twilight. The cover art caught my attention, but since it was book 10 I didn't want to go and jump into a series that far along. A few weeks later we ordered some copies of New Spring and here I thought was my chance. So, I took one home for myself and started reading, which I haven't done since high school, 10 years. I, like everyone else here, was hooked hard and fast. I devoured the book in about 3 weeks and proceeded to the same to each subsequent book until I finished Knife of Dreams February of this year. I found myself at a loss as what to read now that I have "caught up". I have tried some other fantasy genre authors and so far I have not found anything even remotely close to your calibre. When I read that you had been diagnosed with amyloidosis which was causing cardiomyopathy I was absolutely speechless.

I have lost a realtive to lung cancer and I know what chemo does to a person and I also know how much family means at this time. You, as you are aware, are very lucky to be surrounded by such wonderful people. It is well known that people with strong positive attitudes heal faster and better than those who become depressed. With that said, I look forward to reading more of your books in the years to come. Keep up the fight knowing that if we could all somehow help you beat this thing we'd all take up arms and march into battle.

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Guest TheKrisp

Posted

thanks for the update, RJ!

 

we appreciate you giving us a peek inside your world to let you know how you're doing.

 

win the fight!

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THanks for the update, RJ. I'm sure this must be very difficult for you, but please know that while Harriet may be the most important, she's not the only one in your corner; you've got all of us too.

 

I've been in the pharmaceutical industry for over 13 years now, and I've seen some amazing things. It sounds like your getting top-notch treatment, and you've certainly got the right attitude. We're all hoping for your expeditious return to normalcy!

 

Yours,

 

Timothy Stough

Validation Manager

PR Pharmaceuticals

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Dear RJ,

 

Us fans will be behind you all the way. Just as we're rooting for Rand in his march towards Tarmon Gaidon, we're all rooting for your in your fight against this disease.

 

Hang in there! And appreciate your updates. :)

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Guest bradcondray

Posted

RJ and the lovely Harriet,

 

I am very glad the package helped in some small way. All the folks at wotmania wish you not only a speedy recovery but also a lot of quality time with each other.

 

I am so thankful that I found your books...they have added much pleasure to my life.

 

I hope all the little items in the package found some use..... Deadsy tried to get me to add some underwear but ....well...nevermind.

 

 

You both remain in my prayers....

 

Bcondray

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I hope the best for you and your family. You have shared so many great and wonderful thoughts of yours with the world. Thank-you. It's fun to imagine you roaring down the highway on a beautiful Harley with dragons as hair, your wife holding on tight, loved ones on the bike next to you. Be free Mr. Jordan. May life be full and sweet for you. I will say a prayer to our creator for you. God Bless.

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Guest Z. Tribal

Posted

Mr. Rigney,

 

After reading this last blog, and researching a bit on my own, I find you are quite right on beginning a foundation. The least I believe I could do is to pass this by my schools administration. Hopefully I can get amyloidosis added to my school districts health education department.

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Guest Paul Reynolds

Posted

Hi, Mr. Jordan. I don't know if you're actively reading these things as of late, but I saw your interview on Amazon.com and noticed that you seem to be a big Mozart fan. I was wondering if you had any predilection for the clarinet concerto, and if so, if you'd like me to send you a recording of me playing it on my senior recital, as I'm a music major at a prominent conservatory. I think I'm too late for the big "get-well" project, but if there's a way a fan of yours since 95 can spruce up your ears, I'm all for it. Best wishes!

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Guest Henry Citarella

Posted

Mr. Jordan,

 

First off, I have to commend you on how well you are taking all of this. You show us loyal fans more courage and strength than most people can ever hope to attain. Wilson said it perfectly when he said you really are The Dragon Reborn. I am amazed at how confident you are about beating amyloidosis. I wish you, Harriet, and all of your family the best during this trying time. Before I end this, I have to tell you that I love the WoT series. I've read it all twice through in the past year and am entertaining some thoughts about reading it a third time. After all, I have to have some kind of WoT patch before the next novel comes out. On behalf of myself and all of your other readers, I just want to say that while we are all eagerly awaiting "A Memory of Light," we just want you to get better first. There is no reason for us to pressure you into finishing the series before you are ready to and Harriet seems to need you a whole hell of a lot more than we do. Keep up on the blogs once in a while so we can find out how you are doing. Remember, you can beat Liston, even if it takes longer than 15 rounds.

 

All the best,

Henry Citarella

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Guest Amy Farmer

Posted

I'm glad you're back home. I hope you start feeling better and the appetite comes back.

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Guest Herman Basra

Posted

Hello Mr. Jordan,

 

This is a totally off-the-topic question. I have been trying to find the answer too, but I couldnt find any website that would relay this information for me. So I decided to ask directly the source. I am trying to find out if you and Terry Pratchett (if you know him) had ever been part of the Inklings group that Tolkien belonged too?

 

Please let me know if you get time to answer to this fan's question.

Regards,

Herman

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