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A WHEEL OF TIME COMMUNITY
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A Little News, Not too Important

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Guest Robert Jordan

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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.

 

RJ

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Guest Conan Stuart

Posted

I'm praying for you RJ. Keep it up! HOT DAMN is right!

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hot damn is right!!! that's fantastic. hehe, the guy before me had the same sentiments. sweet. :D take care of yourself....

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Another repeat...

 

HOT DAMN!

 

Keep fighting the good fight! We'll keep praying :)

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Guest Michael Clair

Posted

RJ -- So glad to hear the positive news. You are a man who has touched the lives of many, and I am but one. As Superman hears every voice, and God hears every prayer, I hope you hear the well wishes of all your fans.

 

-m

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Guest Jaime Platt

Posted

Rah! Rah! Rhee!

Kick Liston in the knee!

Rah! Rah! Rhass!

Kick Liston in…the other knee!

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Go RJ! Go RJ!

 

I was excited reading this blog. Your boxing analogy is great. I know where you are in your fight better because of them. Keep going partner, we have your back.

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It is those good pieces of news that keep us going, renewing our resolve, and replenishing our strength. The bad news is what keeps us fighting, even if we might be an underdog, I can’t stand to loose. We may get weak, but we continue to throw the left jab to keep the opponent at bay. Do you remember Knob boxing at the Citadel? I had the same thing at VMI, Rat boxing.

After I graduated from VMI, I did not believe that there could have been anything tougher than my Rat year. I was wrong. That Rat year might have been tough, but not near as tough as life can be after graduating, making your career, and raising a family. However, it did give me needed tools to help me during rough times in my life. A lot of upperclassmen tried to break me, as I was a football player they tried even harder. My name was well known to those upperclassmen, and believe me when I say, I had little free time because of it. My one thought that got me through all of their harassment was ‘winning’. Because to me, it was just another of life’s games, and I could never let someone else win that game. That “Game†can be any competition. Competition can be with others or with yourself. I would consider your affliction to be your game. The game is between you and your affliction. The question is, do you rise to the challenge and give everything you have, or quit. YOU are not a quitter, as is shown by your most recent results. Keep putting up the fight, defend when you have to but keep throwing the jab. In one of these rounds your opponent will tire, then the time will come to discontinue the jab and start throwing the combinations.

Continue the good fight, my prayers are with you. Make your own luck.

 

Steve

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Guest R. Artagnan

Posted

Hi Jim,

 

I just had a chance to read your most recent posting. I am so happy to read your encouraging news.

Best wishes on the good news getting even better!

 

And add me to the list of those thousands in your squared circle corner.

 

Roger Artagnan

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Personally, I don't think there's any need to tell us everything. You have to make sure that you're fighting the best way you know how, and sometimes that means holding back. Do what you need to do. Fight like you need to fight, and know we're with you in ignorance or knowledge.

 

Truthfully, there were times you didn't sound so great, but THIS news--this is good. You did get a round from Liston, bless your heart. I'm so happy for you right now. I know enough about you to know that if that light at the end of the tunnel had been a train, you would've done your best to punch that train out too. But since it's not a train, that's got to be a huge weight off of your and your family's minds.

 

Keep swinging, keep Liston off balance. Float like a butterfly, sting like a bee.

 

Much Love to Harriet,

 

Nick

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Dude, RJ, thank God for this medicine. 95 to 13 is HUGE.

I literally felt tingles all over as I read this entry. I'm so happy for you, H, and crew!

 

You may not get a k.o., but we're rooting all the way for a victory!

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Robert,

 

Get better and forget about your book for a while. I happen to live close to the airport which you fly into and I will find you and rough you up if I hear that you've been risking your health by working too much.

 

God Bless! All your fans wish you the very best.

 

Tim

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WooHoo! It is wonderful to hear some good news from you!!!

I hope you are in for a period of smooth sailing after those doggone rough patches.

 

I don't have any experience that compares to what you are going through, but here is my little offering for today:

 

What I've learned from running marathons:

1) You can keep going when you are tired, you can keep going when you hurt.

2) Persevere.

3) It helps to be too stubborn to know when to quit.

4) Persevere.

5) Those cheers from the sidelines really do help....

6) Persevere - WE KNOW YOU CAN DO IT!!!

 

You keep fighting, I'll keep praying. Deal?

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I, too, check this website frequently and am so grateful to hear

of your good news! Thanks to you and your family for keeping all

of us informed and for understanding how much we care! I hope you

and Harriet were able to enjoy her birthday get-away. Take care

and keep moving forward with all you've got! We know you will!!!

 

Rebecca

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Guest D.H.B. IV

Posted

Many prayers sir. If the mind is willing the body has naught but to do what it's told.

Fight like a savage to the very end. Refuse to be extingushed. Burn with rage and only still your heart when the black blanket has completely covered you. Let the blood boil in your veins to prove you still exhist. Threaten death that if he takes you before your work on Earth is finished that I, D.H.B. the fourth will crossover and exact my wrath...there should be no problems concluding my crossover. If the mind is willing your body will do as you tell it. People have told me that rage and anger are bad for the heart, but rage and anger are powerful weapons, remember that. And last but not least you love your neighbors like there's no tomorrow because we live in the present, there will never be a tomorrow. All is quiet in the three-fold land. Keep the peace, find shade where so ever you rest, and may you be blessed with water all the days of your life.

-Traveling Stranger

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Guest Jose Beitia

Posted

Very glad to hear the good news! I just keep praying for your recovery. Keep up the good fight and rage against the cold dark night!

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That is AWESOME news!!! I'll keep praying - you keep fighting!! (Always special prayers for Harriet)

 

Leisa

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Guest Patrice Gagnon

Posted

Dear RJ, Harriet,

 

My first ever post on these pages... But definitely the first time I come around. I've been around from the very beginning, and my prayers and my best wishes have always been with you.

 

Now, I will gladly add many many thanks to God for his listening to all of us.

 

Don't you ever give up. Your strenght is an inspiration.

 

I will keep on reading to find out any other good news!

 

Patrice

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I haven't been posting like I usually do, but I've checked in every few days to see if there's any new developments for you. Knowing what I do of the disease, how little you want to capitalize on it, and how much some people do, my admiration of you has increased in leaps and bounds by your sheer determination to not let it get the better of you. The fact that you try to share anything in your life with us sometimes makes me feel as if you're a favorite uncle (perhaps twice-removed!), one who we seldom see, but just know you're out there somewhere and will occassionally show up at a family gathering here, or someone's birthday there, etc. Thank you for even caring about the fact that we might wonder how you're doing (most well-known people (whether actors, musicians, authors, etc.) wouldn't.)

 

I also feel the need to tip the proverbial hat to Harriet. I've taken care of my father-in-law through strokes and Alzheimer's (until his death), my schizophrenic mother, and my diabetic mother-in-law (who just had 2 stints put in, refuses to eat regularly, won't exercise or get out of bed unless it's to get her pain pills, etc.), so I know that behind every person who is sick and trying to get better, there is some one who loves them, cares about them, and won't let them lay down and die. Considering how often I'd love to beat my head against a wall (and sometimes their's), I know it's got to be incredibly stressful for you, giving your light the love and support he needs to WANT to keep getting up in the morning. Keep it up, Harriet. You truly are a blessing!

 

Until next time...

 

Marigan

Loyal servant to the Great Lord of Chaos, Demandred!

 

(P.S. Shaidar Haran killed Asmodean, Aran'gar is the one who ordered Slayer to kill Rand in Far Madding, and Mesaana is disguised as Bennae Nalsad...) (At least, that's what I think :) )

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Great news. Keep it up. You're a real inspiration to millions of people.

Michael

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Guest Richard Scott

Posted

In the immortal words of Jason Nesmith: never give up, never surrender.

 

Good news and I'll say a prayer for you! You have too many more stories to go anywhere, as everyone and even God can plainly see.

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First time well-wisher here! But the prayers have been non-stop since I first heard back in the spring. Your books got me through 3 months of sitting on my butt waiting to be able to walk again after a car accident 10 years ago and I've been hooked since. You've been helping my husband with my b-day present for years with your usual Fall releases and he thanks you! Perhaps this will change some of your perspective on the who, what, when and why of your characters? Don't life experiences do that?

 

I'm so ecstatic about your news. Anything positive is a breath of fresh air after all you've been through. Of course you'll keep fighting, we're just here to provide the ringside cheers and encouragement that will make you continue to get up off the mat and punch back. God just has to let you get better if for no other reason than to free up some space on his prayer server. Thanks for keeping us updated. It helps us be more specific in our calls on the divine hotline!

 

Carrie

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Guest Racha Giurgiu

Posted

Hugs. Gentle ones, but hugs at any rate. Happy to hear happy news.

 

Racha

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Guest Nathan Love

Posted

Now that youve taken a round from Liston, you'll have to go for Ali ;)

Hopefully 13 will be your lucky number and things will continue to go well. 95 to 13 in a month or so, that is a dramatic decrease. 13 may not be good, but heck, its better than 95 :D

I know how scary congestive heart failure is, my grandpa used to suffer from it (Thank the Lord he hasnt in a long while). But hed be fine, then hed be in the hospital. It was real scary. So i know where your comin from for not telling us everything like that.

 

Keepin ya in my prayers!! God is listening!!

 

-Nathan Love

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WOOOOOT!!!! WOOOOT!!!! WOOOOOOOOOOOOOOOOOOOOOOOOOOOOOT!!!! Good to hear, glad things are progressing well for you.

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Guest Relada Reed

Posted

Hey, it is important news! No, it isn't a remission, but it is a big set-back to the disease. Hopefully things will keep improving. Keep your dukes up.

 

Good thoughts and prayers to you,

 

Relada

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