ANA Discussion Forum
AN Community => AN Community => Topic started by: msuscottie on April 23, 2008, 11:00:10 am
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As some of you know, I've been toying with the idea of writing an AN book about my experience. As I write each page and get closer to the end, I've started thinking about possible titles. Anyone have any ideas?
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If you use it, do we get a cut of the profits!! ;D Just kidding...had to beat Jan to it!! I'm SURE that Lori can think of something good...
K
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How about "I'm (not) All Ears?" ... okay, that was just silly - sorry. I haven't even had surgery yet and apparently the anesthesia has already gotten to me...
Seriously, I love the idea of a book!
Debbi - blogging in NJ...
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How about "The Story of an AN"??? :-)
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Lorenzo (or his friend) gets credit for the best AN pun, which I think would make an excellent book title:
One Lump or Two?
Steve
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Actually I like the name of Deb's blog - Deb's AN Adventure. I think it's very clever and it has a nice ring to it 8)
Obviously, you'd have to substitute your name for Deb's since it's your story not hers.
As for me - I think I should write a book about BAHAs - hopefully Lori will join me unless she's too busy assisting her husband with that garage/surgery business ;D
BTW, nice new picture Scott. I notice you've aged since the last one, though LOL
Jan
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Maybe we could all contribute a chapter? ;D
BTW, has anyone read "The Brain Changes Itself?" I'm just starting it and it seems pretty amazing what out little old gray mass can actually do.
Scott - are you thinking of self publishing or getting a publisher? I have a couple of clients who are in the process of writing books right now, so may be able to come up with a name or two on the publishing side if it would help.
Hey, in less than a week, I'll be a postie...
Debbi - trying not to jump right out of my skin in NJ
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Scottie,
Good to see you back! I hope all is well with you and your family. Your little girl must be doing amazing things now! (Does she like the water in the toilet bowl or the garbage better?)
My suggestion for your book title is " My Journey from Within"
Good luck,
Brenda
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Well, I'm going back and forth with two different book ideas ...
One would be a personal memoir of my journey ... I've written close to 100 pages through all of my experiences so I was thinking of doing something with that.
The other idea (which I'm leaning towards) would be like some of you have mentioned and take 10 or 15 "stories" from AN folks like you and me, and compile them all in to one book. If you take people with 15 different experiences/cases, it might make for an interesting read for someone newly diagnosed ... there is bound to be at least one story that each person could relate to.
I'd be happy to write a chapter and coordinate the other chapters and actually put the book together. The tricky part is with publishing ... It's expensive to self publish, but that is an option. At the very least, a "book" like this would be something that we could share with newbies.
I brought this up on here about a year ago and things got too intense when people wanted me to supply contracts to them for writing their story and guarentee them a certain % of profits. That's when I let it go. I don't know that anything like this would make a penny, especially if self-published, but it would help people who are facing this AN crap and thats what I'm interested in. Obviously, if the book blew up we would share any profits, but until that happened, I think any money made would go back into any publsihing fees. This is all beyond the point. Way ahead of ourselves.
I guess the first thing to do would be to determine if there is enough interest from people on here with unique stories that would actually be willing to write 10 or so pages about their experience. Last time I brought this up, there was a lot of interest, but only two or three people that would actually commit to writing anything. I would think each chapter/writer would have a unique experience and write about something different.
Mine would, for instance, tell my story of having two microsurgeries AND GK
Just throwing it out there again to gauge interest :)
Oh, and Brenda, my little one (Addison) is almost 2! I can't believe it. She's growing like a weed and is no longer a baby. She's a little person now. It's crazy :o
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I like the idea of input from various people, since we all know that everyone's AN experience is different.
You could have my story for free - no contract or royalties.
Jan
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You're hire Jan :) What would be the focus of your "chapter"?
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Me again. I'd commit to writing a chapter - of course, I need to get through the surgery first in order to know how it ends...
I'd probalby want to take a humorous approach since humor has been much of what has helped me get through the tough days.
I actually am a contributing author to a business marketing book that is coming out later this year - not getting paid a dime for it, but that's not why I did it. I think your approach is right on target - let's write something that might help others who are going through the AN experience. Maybe a "chicken soup" approach?
Let's not lose this idea, okay?
Debbi
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Awesome, that's 3 chapters commited. I figure we need about 12 chapters, 10-ish pages each, 120-ish page book.
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Scott~
I have an Addison too -- she is 10 now -- I can't even believe it!
I would definitely commit to chapter -- I don't want to scare anyone off though -- I had it kind of rough, but I think (& the surgeon the other day said) I have a good attitude!! ;D That should count for something! I don't want anything in return unless we're on Oprah -- I'd have to be included in that!!!
K
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You're in. I think it's important to show what a textbook surgery is like and what a rough one is like. I've had one of each, so my story won't be all roses either. I think above all, new folks want to hear the truth. I did when I was new. I think this could be a very valuable thing if we can make it happen.
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I'm not sure what my focus would be - other than to highlight my very positive outcome and talk about my recovery in general. I could also explain how I came to choose surgery over radiation and how in my case it was a good thing since my AN grew rapidly.
I would definitely address SSD and my thoughts on it and why it led me to pursue the BAHA.
In addition, I'd also talk about how the AN affected my life and how having one has changed the way I look at things. There would be mention of the ANA and this forum. And I'd also definitely incorporate humor, because as Deb said, it's helped me through my AN journey.
Jan
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I definitely go for the HUMOR!!!! ;D
K
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Hey, here's a book title - "Everything you want to know about ANs, but are afraid to ask" ;D
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Jan, I think that's a great title!
Scott, I'd offer to write a chapter, but I was fairly "textbook", so maybe if someone needs a good bedtime story, mine would work! :D The book is a fantastic idea!
So, here's my latest bright idea.... Scott, you hurry up and publish that book, we can have you and LADavid on Oprah as guests, we can be in the audience and Oprah can give us all a free copy of the book! And maybe she'll throw in a new car too!
Our garage surgery is on hold this week until after the neighborhood garage sale this weekend. I needed to make space for a waiting/recovery room, so I'm getting rid of some junk! I hear K's husband is pretty good at IV's though - he may be able to hold down the fort for a few days!
Lori
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Scottie
I, like you, was taking a swing at writing a book about my AN. I actually somewhat wrote the story in a one of the threads on here. But here's where I ran into problems. I could only address my experience from a Translab. I think in order to make the book universal, it needs to encompass all forms of treatments and all ages and backgrounds. That way when a potential AN patient is seeking guidance, they can read about the full scope of an AN. I like the Chicken Soup For the Soul idea. We are all different with one thing in common.
As far as self-publishing, I've looked into options for publishing for other things I have written. It is possible that Rodale Publishing may jump on this idea since they are leaders in Health and the concept is unique. And there are other options like Lulu that don't require a cash outlay. And at last resort, there is Publish America ( a lot of bad things to be said about it).
Count me in for a chapter -- and count me in for assistance in editing and publishing. I can go either way -- profit or non-profit -- profit since I haven't been able to work with facial palsy; non-profit -- I need writing credits.
Excellent idea.
David
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Hey Lori
Just saw your post on the Oprah Show. LOL. Actually not a bad idea. I don't know about Scott, but I have to get rid of this synkinesis first.
As I said in the previous post -- this is a very good idea. There are 3 - 4000 new AN's discovered annually in the US. Which means there are at least that many questions that need to be answered and decisions to be made. This works as a text book. It also works from a human interest standpoint.
One other thing about publishing -- this project could find support and assistance from ANA.
David
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Now wait a minute...I think I should go ON Oprah -- I have a paralyzed face & am not afraid to show it to the world -- they need to see what we are really dealing with here!!!
K ;D
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I'm excited about the positive response from everyone. I think this is do-able and I'm willing to coordinate. It sounds like LADavid has some knowledge of the process which we'd definitley take advantage of. I'll give Oprah a call and see if she wants to have us :) I agree that each chapter should be a unique experience and not just 12 chapters of people who had textbook translab surgeries, ot 12 watch & waiters. Lori, I do think there is some value in writing about a "textbook" surgery though. It's important for people to know how it's really suppose to go. One of my surgeries was textbook, and it was a lot different than the other one, so if you're interested, I'd love to include you.
Jan, I think SSD and BAHA is a great angle to really get into in your chapter.
Debbie, I think your angle could be fascinating in that you can really log your thoughts prior to surgery. Many of us have to draw on what we can remember. I sure your thoughts/writing could me much more vivd.
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Kay
You do have a point. It's not my face that is an issue though -- it's that I can't speak with the synkinesis -- at least speaking that is understandable.
But I do think you have the most compelling story and the greatest achievement over adversity. Your message would be the one to hear.
BTW, does the IV seem to be working? And how is the healing?
David
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I can probably use some of the bits and pieces from my blog (minus some of the totally silly stuff of course). Which reminds me that I should do a little blogging today...
Debbi - jittery in NJ
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Well, alright, Scott - since you've twisted my arm - I guess I could write a chapter... I think I've only had about 5 minutes of my 15 minutes of fame , so I need to do something else to fill up the rest of my time slot anyway! :D
Ok, David, we'll have Oprah seat you strategically on the set so that your good side faces the audience - we have a year to work on your lines - you'll sound good by then!
K - I think all your bruises will be gone by then... we may need to hit you over the head with something heavy just for effect. You'll have to take one for the team. :P
Lori
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Jan, I think that's a great title!
Lori
Actually I kind of "stole" it ::)
When I was reading posts earlier today the title of a book my mother had when I was a child popped into my head. I have no idea why ???
The title of the book was something like "Everything You Want to Know About Sex*" and at the bottom of the cover in small print was "* but were afraid to ask". I can picture the cover of the book - it was yellow - but for the life of me I can't remember the author's name. He was some kind of sex "expert".
My mother used to have this book "hidden" in her nightstand next to her bed but my siblings and I would regularly borrow it and read parts LOL Now, keep in mind that I was a child at the time and I'm currently 46, so this was WAY before Dr. Ruth, Howard Stern, MTV, and yes, folks, even Oprah. I don't think my mother ever did find out that we were reading her book - and I certainly don't plan on telling her now ;D
Jan
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Oh - forgot to say - there's NO way I'm clocking K with a heavy object - team or no team!
Jan
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Count me in too... Mine could be about the decision making process...and my surgery if need be.
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Thanks Jan!! You are a ture friend...I'm beginning to wonder about that other AN girl...I think she is jealous that we are moving in on the garage business!!
;D ;D ;D ;D ;D
K
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Thanks Jan!! You are a ture friend...I'm beginning to wonder about that other AN girl...I think she is jealous that we are moving in on the garage business!!
;D ;D ;D ;D ;D
K
You know, I got the same impression - but I'm thinking there will be enough business to go around. LOL
Jan
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Title idea:
"The Acoustic Neuroma Journey - The journey from diagnosis to recovery through the eyes (and ears) of those who have been there"
I might be interested in contributing a chapter as well if wanted. I have my surgery in 2 weeks (*gasp*).. We'll see how helpful that "story" would be to anyone.
Brian
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Title idea, but you'd have to get on the Oprah Show first.
"It took a brain tumor to get me on Oprah"
Syl
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Brian and Syl - those are both great titles too!
Oh, K - I was just kidding! I can't hit you over the head since I read the thread where you'll be doing the babysitting! I'll put the kids on a plane to your house this afternoon. 2 more little girls - you'll hardly notice them. I'll even dye their hair blonde so they'll fit in with your girls! ;)
And Brian, I hope you have a very boring and uneventful chapter to add to the book!
Lori
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Hi,
I have not been on the ANA forum for quite a few months and just noticed this thread for the first time. Count me in. I read through all the posts quickly but didn't note exactly what chapters are already "spoken for". I am 8 yrs. post surgery. I am also a professional in the counseling field: a licensed marriage and family therapist. So I could do a chapter on coping emotionally with all aspects, from initial diagnosis to coping with after effects, making treatment decisions along the way. It could be somethlng like a chapter by a professional in dealing with life's difficult stressful transitions, who also personally is on this particular journey. Let me know if you are interested
Kate
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Hi Scotty,
I'm glad you are still working on this project. Maybe something will come of this one day soon! I wish I could come up with a clever title for you - but right now I "got nothin'".
Maybe something will occur to me, and if I write it down real quick, maybe I'll remember to tell it to you later! ;D
Sue in Vancouver
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It's still something I'd love to do, it's just been rough to get off the ground.
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HI Scott-
I was just thinking about this yesterday and wondering if it is still and idea.
Wondering if a first step might be to gauge ANAs interesting in providing this as one of their resources - either as a for-fee book, or as a download? Maybe one of our wonderful Global Moderators could help with this in terms of talking to powers that be at ANA?
Then, seems that the next logical step would be getting interested authors to submit a chapter outline - this would be less than a page from each author with topic and general outline. That gives us an opportunity to see what we've got in the way of overall content.
I would be happy to volunteer to helpl you with this. I don't have ANY publishing experience, but do have a little bit of writing experience. I'm thinking LADavid and Jim Scott may also be able to lend some expertise?
I love this whole idea and hope we can get it off the ground!
Debbi - as always, with lots to say...
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I'm still ready, willing and able ... I think it's been a matter of people wanting to participate, but then not finding the time to sit down and write a chapter, so if we can find a crew of writers committed to writing, then I think we could make it happen.
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I will buy the first copy ...
I read through this the other day and was trying to think what I could write and can't think of a thing
to write ... or more accurately can think of too many and couldn't write a cohesive paragraph about one
subject...
The wait ...dealing with family that just wanted it ripped out while I was content to wait til Bennie began
to grow at an alarming rate... the SSD ... the never ending ringing in my ears that at time brings me to tears
because it can no longer masked by sound since I have no hearing in that ear... the loss of my ability to sub
at school because I could not guarantee that at some point in the day I would not have to lay down or leave...
the frustration of not being able to fully participate in the farm work... farms don't have smooth paved walkways
and working the cows is now a real danger as I stumble about ... I am no longer a fully functioning part of our life ...
I feel left out when husband and the girls go on the fence rounds that are a weekly ritual of walking the fences
looking for breaks and along the way looking for deer , feathers ,mushrooms ,flowers ect... less about the fences and
more about life ... and I am no linger a part of it because I can not manage walking up and down the hills over
limbs ,rocks and other obstacles ... they bring me back rocks,flowers and sometimes take my camera so I can take
a virtual walk with them... stick them on the computer and make a slide show that they narrate for me ... my
husband says don't worry ... they can handle it without me ... tells me rest or read or whatever... down time from
the kids ... the thing is I don't want them to handle it without me ... I am still here and get angry sometimes at the
changes in my day to day life...he still goes to work every morning and comes home to the farm to work some more
and says to not worry he has things covered... just sucks sometimes...
And for some reason I keep thinking about the gnome I saw at the end of my bed when I was coming out of
anethesia... turned out to be a nun but I still see her as a gnome ... I doubt many have had a gnome come visit them :)
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I always tell people that I saw death, and it looks like a tiny Fillipino man ... because when I was in recovery, I opened my eyes for a second and there was a chaplain (who was filipino) standing over me reciting "as I walk through the valley of the shadow of death ..." It was at that point that something in my head clicked and I thought, "son of a bit%h! I died"
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When I came around and saw the little gnome/nun I kinda thought the same thing except my
surgeon and anesthesiologist were with me too and didn't figure we had all croaked
te little nun was about 4 feet nothing , beutiful little black woman with full cheeks that reminded me
of the shell of a buckeye
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Hadn't seen this thread before today - think it's a great idea, especially to somehow associate it w/ ANA, if they're willing. As one who is barely more than a newbie here, I know it would have been something I definitely would have been interested in - still would be interested in it! We have such a great wealth of information and experience here, not to mention some super writers (thinking of Jim Scott as well as many others). My journey/story is not complete (as I can't make up my mind) and it may be on the dull side, but I'd help in any other way I could.
Cindy
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I always tell people that I saw death, and it looks like a tiny Fillipino man ... because when I was in recovery, I opened my eyes for a second and there was a chaplain (who was filipino) standing over me reciting "as I walk through the valley of the shadow of death ..." It was at that point that something in my head clicked and I thought, "son of a bit%h! I died"
Scottie -
that is SO funny! You've got to put that in the book ;D
Jan
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Yes, I think the gnome nun and the Filipino chaplain definitely deserve a mention! :D
Lori
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When I came around and saw the little gnome/nun I kinda thought the same thing except my
surgeon and anesthesiologist were with me too and didn't figure we had all croaked
Soundy -
this is right up there with Scottie's chaplain story.
It's strange how you had the presence of mind to logically realize that since the two docs were there with you, your "number wasn't up" yet :)
Jan
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yep ... the walls were still standing , to so didn't figure a bomb ,earthquake or fire had swept
through and got us all... though in lightening fast speed , that still amazes me since my brain now
operates is snail mode most of the time , these things crossed my mind , before deciding we weren't
dead that there really a gnome at the foot of my bed :D
the gnome/nun thing was kinda scary as it happened ... but later funny ... I went back post op and
met her as a nun... she still looked a bit gnome-ish , even without lots of good drugs and an
hour or so out of surgery.. Sister Mary Margaret I think was her name...the whole story is here
somewhere
A chapter of this odd interpretations our brains made of things might be funny reading
On second thought I think her name is Mary Grace... Mary Margaret was one of the little girls
I had at Day Camp a couple weeks ago
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Soundy -
I went to a catholic women's college, so in my experience there are a million variations of Mary "something". Mary Claire, Mary Grace, Mary Therese, Mary Jo, Mary Beth, Mary Alice, Mary Catherine, Mary Margaret, Mary Eileen, Mary Anne, etc., etc., etc., The list goes on and on :D
I was one of the few that wasn't named Mary; but it's my middle name, so I fit right in ;)
Janet Mary
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OK, I'm entertained just reading this thread, so let's establish 10-12 people willing to write a 5-10 page "story" about their experience. Just add your name and "focus" if you're interested ... I'll start ...
1) Scott - 2 Microsurgeies + GK Radiation
2)
3)
4)
5)
6)
7)
8)
9)
10)
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OK, I'm entertained just reading this thread, so let's establish 10-12 people willing to write a 5-10 page "story" about their experience. Just add your name and "focus" if you're interested ... I'll start ...
1) Scott - 2 Microsurgeies + GK Radiation
2) Debbi - the whirlwind 2-month lead up to translab, and recovery
3)
4)
5)
6)
7)
8)
9)
10)
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OK, I'm entertained just reading this thread, so let's establish 10-12 people willing to write a 5-10 page "story" about their experience. Just add your name and "focus" if you're interested ... I'll start ...
1) Scott - 2 Microsurgeies + GK Radiation
2) Debbi - the whirlwind 2-month lead up to translab, and recovery
3) Jan - retrosigmoid + BAHA
4)
5)
6)
7)
8)
9)
10)
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Well, what can we do with 3 people? :D
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Give it some time. Not everyone is a forum addict like Debbi & me ;)
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Well, you can count me in for number 4, but I'd have to figure out what to write about...
And Jan, in regards to your nun story - at my college we had Sister Mary Bookstore (she worked in the bookstore, of course), Sister Mary Calculus, Sister Mary Registrar, Sister Mary Library.. who knows what their real names were, but at least we all knew where they worked! My high school had Sister A/V (in charge of the audio/visual room) I wonder if her name was Mary?
Lori
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Lori -
we had Sister Mary Paperplate - she was an older nun who wore the old-time habit with the headpiece that resembled a white paper plate - hence her name :D
Hey, do you like that word "hence" ? I'm trying to expand my vocabulary ;)
Jan
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I have no clue how to get that quote thing to work, but I will contribute my story...
K
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I'm in Scottie. I have started but had to put it down coz of rotten headaches.
need to look up the spelling of every anti inflamatory on the market (lol)
Laz
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OK, I'm entertained just reading this thread, so let's establish 10-12 people willing to write a 5-10 page "story" about their experience. Just add your name and "focus" if you're interested ... I'll start ...
1 ) Scott - 2 Microsurgeies + GK Radiation
2 ) Debbi - the whirlwind 2-month lead up to translab, and recovery
3 ) Jan - retrosigmoid + BAHA
4 ) Lori - who knows? ;)
5 ) Kaybo
6 ) Larry - rotten headaches
7 ) Brian - retrosigmoid, poss. CSF leak under skin which caused MASSIVE headaches
8 )
9 )
10 )
(That better?)
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Almost there, let's get a few more! :)
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How about Captain Deb? She's bound to have an interesting story!
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Good idea, Jan - and I also think we need MaryBKAriz since she has such an amazing CK story. And how about our own Jim Scott to write about debulking and FSR? Do we have a GK story?
I'll PM Jim and Mary and see if I can get them over here...
Debbi, fingers poised on the keyboard...
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I have some GK included in mine. 2 surgeries + GK, but it might also be good to get a view from someone who only had GK. After 2 surgeries, I kind of view GK as a cakewalk, which I know it's not, so my view might be skewed.
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Scott,
I can write about my two experiences in 1988 (suboccipital) and 2007 (endoscopic retrosigmoid) but the first one was so horrendous I wonder how much help it can really be for any newbie because nobody does things this way anymore (thank GOD). It is too easy to get wrapped up in all my suffering after the first surgery. In a way, it is really encouraging because recovery does happen (even if it takes a long time), technology moves forward and it becomes possible to have a "good" (contradiction in terms?) follow-up surgery.
Eve
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I think it's important to talk about both good and bad experiences. The important thing is that they are realistic experiences. I had the same kind of deal. My first surgery and recovery wasn't good. Then my second one was more textbook and my GK was a piece of cake, so I plan on discussing the highs and lows. You're in ;)
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Debbi -
Jim and MaryBK, both very good ideas!
BTW, nice picture ;)
Jan
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I just sent you guys (& ladies) an email ;D
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I will be sure to purchase a copy or two. Really hope it happens.
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Hi, Scott and friends:
I had neglected this thread for awhile because it had become relatively dormant but I see it's come back to life. Good.
I received a PM from Debbi today (thanks, Debbi) nudging me to write a chapter for the AN book. Of course I'm willing to contribute my experience, which included a cancer scare (false alarm) as well as successful retrosigmoid debulking surgery and FSR. I had an excellent surgeon and a fairly rapid and complete recovery so mine would be a positive story. I need to know how many words are required and where to send my chapter, when completed. I assume and accept the fact that this will be a volunteer work (no money), which is O.K. :)
Jim
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Great Jim ... if you want to send me your email address via private message, I'll make sure you're included on the emails with further details.
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Kaybo and Nancyann would also have great stories and would make nice additions to the book.
I know Kaybo is out of town until tomorrow; maybe she'll respond then.
Got your email, and I'm "in"
Jan
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Me, too, Scottie.
Debbi - fingers poised
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I would be happy to write about my recent CK that ended up being one instead of three days, very unusual turn of events!
If interersted, I would like to contribute.
Mary ::)
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Great, just PM me your email address
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Thanks to those of you participating. We've already got two or three stories in!
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Scott,
I had GK last summer, and would be willing to write up my story. Pretty short, and pretty sweet compared to others. I would also probably include, if appropriate, my decision-making process which includes my experience wih both my mother and my first husband's brain surgeries. It's a fine line, since I don't want to scare people away from microsurgery, but it was definitely a big factor for me. So..however it might fit in appropriately. If you've got standalone GK experiences committed to write-up already, I have no big need to write up my story, though!
I also stand by my offer from last year of serving as a proofreader. I'm pretty good at spotting things.
I'll send you my email address.
Ciao,
Dana
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Scott,
I should have mine ready over the weekend. I have written it, just want to review it.Looking back at Eve's post in june, my story will come across rather bitter towards the medico's and I think it's worth telling coz its true. Our introduction to the book should, amongst other issues, identify to people that "the process" is very different for everyone. there are good outcomes and there are not so good ones.
cheers
Laz
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Yeah, we'll definitly have some sort of introduction. My story isnt all happy/cheery either. About halfway through I was like, "Geez, I need to lighten this up a bit." ;D
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I think I will be the LAST writer to get my story done - I haven't even started!! Once I get going, though, I think I will be fine. We are just traveling so much this summer and keeping up with 3 girlies is keeping me hopping (not to mention all the time I have spent on the phone about my DSL!).
K
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Kaybo -
have no fear - I'll be right up there with you.
Haven't started yet, but I do have good intentions (too bad that doesn't count!) ;)
My internet connection crapped out last night, right while I was trying to post a reply to Jimbo - so I feel your pain about the DSL line. I'm thankful my connection is working this morning. I don't know why it is - but I'm just going to go with it; no questions asked.
Jan
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Hi every one....
A Possilble title could be "But They Told Us It's Not REALLY A Brain Tumor!!"
irene
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Well i still haven't dotted the i's or crossed the t's yet. i will do very very soon - still battling the headache.
As for our name, i think something short and simple.
i can think of some silly ones but nothing very good.
Oh with the intro, do you think we should have some facts, not opinions. like the different surgery types, the different radiation treatments, wait and watch, symptoms, post treatment issues etc or would that take too much away from the "personality" of the writings.
Laz
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Potential titles;
"It Really is All in My Head"
"Accoutic Neuroma: Patient's Stories"
"What?"
"HeadStrong"
Regards,
Rob
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Scott:
I hate to admit this but I haven't even started my story - and I usually hate procrastination! Things have been a bit busy for me and what time I can spare for the internet I spend playing moderator and contributing to the forums. However, I really want to share my AN experience and have committed to do so, and I will honor that commitment. I realize this isn't a competition but I hope my story is acceptable, as the level of writing so far has been excellent. I guess there is only one way to find out!
I'm going on vacation (Disney World) Aug. 23rd to the 31st but will set aside time to write when I return, even if I have to stop posting on the AN site for a day or two. I'm sure it'll survive without my contributions. Meanwhile, I commend those who've already submitted their stories and I hope to join their ranks soon or Soon. :)
Jim
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Scott,
Do you need any more chapters written? If so, I'd be willing to share my story. I was misdiagnosed/blwn off for over a year before I was even diagnosed. Once diagnosed, I had surgery within three months and it has been quite a journey for me. If you could use another chapter let me know and I will start writing. Do you have any target dates for story submissions.
Bridget
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Jim -
I'm with you - still haven't even started my story - just too darned busy lately ::)
I do, however, hope to soon.
It's also on my to do list to contact Judy V @ the ANA about a possible introduction - I haven't forgotten.
Jan
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This is my first post to this thread, though I've been reading it. How about "There's no such thing as a benign brain tumor"
Best,
Marci
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This is my first post to this thread, though I've been reading it. How about "There's no such thing as a benign brain tumor"
Sorry, I don't get it ??? and I'm big on sarcasm.
Jan
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For a book title. You know, even though it's benign, it's still not good. Ok well if I have to explain it then it's definitely not a good title. LOL.
M
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Sorry. I took your title to mean quite literally that there IS no such thing as a benign brain tumor - and ANs are 99.9% benign so I just didn't get it ???
Jan
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You'll have to excuse Jan - you know those analytical accountant-types! :D
I'm working on my revisions....ugh...thank God for computers - I would have wasted a whole rainforest of trees with all the paper I would have used up by now!
Lori
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Revisions ???
I thought your story was great the way it was, Lori.
Who suggested revisions?
Jan
You don't have to name names if you don't want to. You can just PM me.
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Lori~
at least you have revisions...
K
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I am still revising mine, too. I had a friend, who's also a published author, read it and he made some suggestions which I am incorporating. Also figured I'd wait until my first follow up MRI in a couple of weeks to add what will hopefully be more good news to my story...
Deb
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Lori~
at least you have revisions...
K
Excellent point, Kaybo.
I have yet to put pencil to paper - or should that be fingers to keyboard ???
Anyway, I'm confident we'll both "get our show on the road" soon.
Life is short,
Jan
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Well, the usual grammatical and spelling errors that I didn't notice the first time. Guess I should have run the old spell check, huh? Amazing how I can pick up on errors other people make but I miss my own! Oops. Oh well. I never claimed to be a good typist. Or an English teacher!
It was also suggested I add a little more on the BAHA, but I was leaving that to you, Jan, and plan to put a little more in there about the facial issues.
One of these days....
Lori
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It was also suggested I add a little more on the BAHA, but I was leaving that to you, Jan,
Oh! Guess I'd better start writing soon, huh? :-[
Jan
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Fellow authors:
I just sent Scott my chapter, all 4,757 words. Glad to have it finished. I've been absent from the forums while writing - the only way I could get it done. I left out a few minor details to keep it from being too long but I believe I managed to capture the essence of my experience. If editing is necessary, I'll do it, of course, but time is a problem for me and it could take awhile to re-write.
I trust it will be acceptable.
Jim
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Jim, will there be a glossary at the end of your portion so we can look up the words we don't understand? ;)
Lori
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Jim, will there be a glossary at the end of your portion so we can look up the words we don't understand? ;)
Lori
Lori:
That would take away all of the fun! ;D
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Ah, great... guess I better dust off my Oxford English Dictionary! ;)
Lori
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Ah, great... guess I better dust off my Oxford English Dictionary! ;)
Will you "translate" for the rest of us?
Jan
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Cheeky Bloke remains in the wings for assistance with the Oxford Dictionary..... according to the bloke, it's "proper" English! :)
Ah, great... guess I better dust off my Oxford English Dictionary! ;)
Will you "translate" for the rest of us?
Jan
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I'll add my title IT'S NOT EAR WAX!!!
When I ask people to speak up or repeat what they said, I often get this reply, "Are you sure it isn't just ear wax and not really a tumor?". My husband used to ask the same question even though he saw the AN on the MRI. When he saw that it had grown this past year, he said he wouldn't throw out the ear wax theory any more. One guy even asked me if I could just get the tumor out using a Q-tip. Everyone meant well. People have been very supportive now that they know I am having GK. They ask me what they can do to help after I have GK. I anticipate walking out with no problems, but maybe I should just milk the situation and ask for meals for a month! My husband's cooking stinks, and I'm not much better!
A book would be great, and I would definitely want a signed copy.
Nancy
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Phyl,
Does this mean we'll have to read the dictionary with our pinkies up in the air in order to be proper? :D
Lori - still speaking "proper" New Jersey-ish
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I'll add my title IT'S NOT EAR WAX!!!
When I ask people to speak up or repeat what they said, I often get this reply, "Are you sure it isn't just ear wax and not really a tumor?". My husband used to ask the same question even though he saw the AN on the MRI. When he saw that it had grown this past year, he said he wouldn't throw out the ear wax theory any more. One guy even asked me if I could just get the tumor out using a Q-tip. Everyone meant well. People have been very supportive now that they know I am having GK. They ask me what they can do to help after I have GK. I anticipate walking out with no problems, but maybe I should just milk the situation and ask for meals for a month! My husband's cooking stinks, and I'm not much better!
A book would be great, and I would definitely want a signed copy.
Nancy
Nancy:
A signed copy is yours, should a book ever materialize. Right now, we're in the planning and early implementation stages; writing and submitting chapters as drafts. Scott is valiantly acting as editor/organizer with input from the various authors. An actual book would be great but that may be a long way off. I would like to see at least some of the chapters 'serialized' in the ANA newsletter ('Notes') which would offer the readership our stories in a convenient form. We'll see.
I was flabbergasted - and its not easy to gas my flabber - when I read about your husband and others asking if you had 'ear wax' instead of a tumor. I'll give your husband a pass here (I know he'll be relieved) but really, for anyone to make such an assumption is simply absurd. I can't imagine asking if the tumor could be removed with a Q-tip. One has to wonder where these folks get their ideas. I guess the 'Q-tip guy' would think you could fix a broken ankle by wearing tighter socks. Yeesh!
While 'milking' your GK isn't advisable and might actually put you in a mindset that could unnecessarily prolong your recovery, which is normally pretty rapid as I understand it, (my 26 FSR treatments didn't require a recovery period) a few days of help, including meals, might not be such a bad idea. :)
Jim
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Jim,
Sometimes I give my husband a pass!!! He lost the hearing in one of his ears a couple of years ago, and the doc pulled a ton of ear wax out of his ear. I think he was just hoping I didn't have an AN. He has always been worried about me even when he suggested it might be ear wax!!! As for the Q-tip guy, all of us in the neighborhood are pretty sure he is an alien. He can come up with some stuff that is way out there. But, he is always good for a laugh, and he buffed out all of the scratches on my car without me even asking. God love him!!! I just think these ANs are rare enough that people just don't understand how to react to them. Some of my friends have read some material on them, and I have appreciated their doing that.
I wouldn't really "milk" the GK, but if anyone offers to cook me a meal, I'm not turning them down!!!
I hope the book materializes.
Nancy