Author Topic: Writing a Book - - Looking for Stories and Quotes  (Read 6427 times)

Debbi

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Writing a Book - - Looking for Stories and Quotes
« on: May 12, 2010, 09:04:12 am »
As some of you know, I started writing a book earlier this year.  The book is about life changing medical “events” and how we deal with them.  I am using my own acoustic neuroma experience as part of the story, but want to make the topic broader and encompass other life changing medical diagnosis (diabetes, celiac, fibromyalgia, chronic pain, cancer, etc).  I don’t have to look very far to find many people who’s lives have suddenly changed when the doctor said, “you’ve got (fill in the blank.” 

So, I am looking for stories and quotes from you.  I am specifically interested in learning how you coped with the initial diagnosis (and it doesn’t have to be an acoustic neuroma, it may be something entirely different) and how you have coped with living your life differently as a result of the diagnosis.  I won’t use anyone’s actual names and will endeavor to keep all stories completely anonymous.

If you have some experiences you’d like to share, please either add them to this string or send me a PM (or a direct email – see my profile for email address.)

Thank you so much! 

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

grega

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Re: Writing a Book - - Looking for Stories and Quotes
« Reply #1 on: May 12, 2010, 10:34:30 am »
Hi Debbi .... let me be the first (by the looks of things herein) to wish you well with your book!  Should be a very interesting project.  I'll consider responding with some info.

Greg
1.5 cm AN retrosig 11/04.
Drs. Henry Brem & Michael Holliday @ Johns Hopkins, Baltimore
SSD right. Tinnitus big-time, only when thinking of it.
BAHA since 7/20/10 ... really helps w/ hearing, specially after programming in subliminal message: "Hey, don't listen to your tinnitus!"

CHD63

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Re: Writing a Book - - Looking for Stories and Quotes
« Reply #2 on: May 12, 2010, 01:33:43 pm »
Hi Debbi .....

What an ambitious undertaking to write a book!  Best wishes as you work on this interesting project.

I would be glad to participate, but I am not quite sure whether you are looking for unusual/unique aspects or just notes from each one's personal journey.  I feel like my experience with the AN was rather ordinary ..... from the normal terrified reaction upon diagnosis through to an uneventful recovery.  The only thing unique about my situation might be the fact that this was my second skull-based surgery, leaving me with no functioning vestibular nerves.

Just PM me with the kind of response you might like and I will be glad to send it.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Debbi

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Re: Writing a Book - - Looking for Stories and Quotes
« Reply #3 on: May 12, 2010, 02:20:00 pm »
Thanks Clarice and Greg-

To give this a little more context ... I think that for many people who are diagnosed with any sort of medical condition, there are two really difficult periods:
1)  coping with and understanding the initial diagnosis - this is when many of us go through fear, denial, bargaining and even depression
2)  what happens "afterwards" - For those with lifetime conditions such as firbromyalgia or diabetes there is the process of coming to grips with the fact that life has changed and it's not going to be what it was before.  For those of us navigating through the post treatment phase, there is still fear and depression to deal with.  Some get through it quickly, others have a much harder time. 

My intention for the book (the working title is "When Life Gives You Lemons...a Survival Guide When the Doctor Says...", but that may change) is to give the reader some examples of how others have dealt with life-changing medical conditions or events.  I know what it was/is like for me to adjust to being deaf on one side and I know what I do to get through the hard days, but what do others do?  What gets you through the tough days?

I hope this helps!

Debbi (budding author) ;D
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Debbi

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Re: Writing a Book - - Looking for Stories and Quotes
« Reply #4 on: May 14, 2010, 07:00:42 am »
Thank you Clarice for sending me so much wonderful information.   :)

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Kaybo

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Re: Writing a Book - - Looking for Stories and Quotes
« Reply #5 on: May 14, 2010, 10:02:30 am »
You pretty much know my story so if you want anything from me, just ask!!  ;)

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Debbi

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Re: Writing a Book - - Looking for Stories and Quotes
« Reply #6 on: May 17, 2010, 08:45:19 am »
Thanks to all who have PM'd or emailed me!  If you're on the fence, here are some specific questions ...

1)  What led you to the testing/diagnosis - what symptoms did you have?
2)  how did you feel in that first 2 or 3 minutes after hearing "you've got a ..."?
3)  if you had multiple treatment options, how did you make a decision?
4)  Was there anything special that you did to prepare for treatment/surgery?  (spiritual, physical, other)
5)  Any surprises immediately following treatment?
6)  What was the first month post treatment like?
7)  How do you feel a year later (physical and emotional).

I am going to sprinkle short quotes throughout the book, so feel free to answer some, all (or none).  And, remember, this doesn't necessarily have to be acoustic neuroma related - just something that you feel has been life-changing.

Many thanks!
Debbi (still budding... :D)
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

moe

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Re: Writing a Book - - Looking for Stories and Quotes
« Reply #7 on: May 20, 2010, 11:03:16 am »
What gets you through the tough days?


Drugs, man. And sleep. Pretty boring life.

Wow you are ambitious! I'll send some info your way, probably stuff you've already read. Maybe an introspective view as a nurse being the patient. I've always wanted to write about that, but I'm too preoccupied with all my nuances and  life activites to sit and do it. You just may be my incentive! ;D

Good luck :)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Debbi

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Re: Writing a Book - - Looking for Stories and Quotes
« Reply #8 on: May 20, 2010, 11:40:25 am »
Haha - drugs - very funny Maureen! 

But seriously, I'd love some perspective from you as a nurse AND as a patient.  In some ways, having an inside view of the medical world is probably a double edged sword when you suddenly find yourself being the patient.  So send me anything/everything.  And, hey, maybe it will be the start of YOUR book... :)

Debbi (fingers poised on keyboard...)
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

moe

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Re: Writing a Book - - Looking for Stories and Quotes
« Reply #9 on: May 20, 2010, 12:39:38 pm »

  In some ways, having an inside view of the medical world is probably a double edged sword when you suddenly find yourself being the patient. 
 

Yep you bet.
It's hard work being a patient. I wanted to know what was going into my body, when I was coherent enough. I wanted to know my hemoglobin, hematocrit levels.
I said  NO WAY when they were going to "top me off" with some blood after the bloody thing was removed and my levels had dropped drastically. Fried chicken livers & onions were the cure!

I knew I didn't need that IV put back in when there was maybe just one more dose of antibiotic. I asked her to call the doctor, but she didn't!
She put the iv back in anyway, in the middle of the night of course, only to have it taken out in the morning.

People knew I was a nurse (and my hubby is a navy doc), so that affects some things. Like, "do you want some pain med?" uhh yea.

I was throwing up in the ICU after brain surgery. Repeatedly. They should have been pushing something in that IV  at rapid succession to get it under control, but all I remember is the heaves, the head exploding, and some well intentioned nurse dabbing my mouth with a cloth. Give me a dang cold washcloth will ya?!


With my most recent face surgery, I had this fear of throwing up. Did well the first night. Kept asking for nausea medicine, just in case. I then knew it was either zophran or  reglan or phenergan. They rotated them.
I had one throw up the morning after the face surgery. I was doing soooo well.
The doc had ordered 2 potassium pills, on an empty stomach, which came up. Bad doctor! Bad nurse for not asking the doc to make it IV form. I was an easy patient. I'm in the ICU!
The next day, I DID get IV potassium like I should have the previous day, and was fine. Then I was paranoid until I left the hospital that I would throw up.

And as a nurse, I know when I want my pain med and nausea med, and you better bring it to me! And bring me the nausea medicine before the narcotic, not with it!

So that's all for now. ;)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Cheryl R

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Re: Writing a Book - - Looking for Stories and Quotes
« Reply #10 on: May 20, 2010, 01:12:57 pm »
Moe,   Sounds like my surgeries!      Like my questioning why my jugular (which was done for my CSF leak surgery since no veins around from the previous trans lab) had an  x ray taken for it on Sun when it was put in Fri night in surgery and the  x ray should been done right then.   Was already locked by Sun.     Plus I have stories too.
                                                     Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Debbi

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Re: Writing a Book - - Looking for Stories and Quotes
« Reply #11 on: May 20, 2010, 01:51:29 pm »
I just want to thank everyone who has taken time to share their stories with me.  Not surprisingly, I am awed and touched and humbled.  And, I am reminded yet again of how similar and yet unique our experiences before/during/after are.  Thank you to those who have PMd me, and those who've responded here - and please don't stop!  I am already thinking about the next book!   ;D

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

msuscottie

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Re: Writing a Book - - Looking for Stories and Quotes
« Reply #12 on: May 28, 2010, 01:30:12 pm »
Like I told you before Debbi, I'll be happy to help with anything you need!   :)

Debbi

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Re: Writing a Book - - Looking for Stories and Quotes
« Reply #13 on: May 29, 2010, 06:39:20 am »
Hey Scott!

Haven't seen you around these parts for awhile.  And, thanks for the offer.  There are actually quotes and observations from your story on the Brain Gang Blog that I would love to use.  I will be putting all quotes in as "J, an acoustic neuroma patient" or "C a diabetes patient" - keeping all contributors completely anonymous.  Your story is a powerful one and you have managed to articulate some of the emotions that we all experience during this journey - so thank you!

Meanwhile, for anyone reading this thread, if you haven't checked out Scott's blogsite, please take a few minutes to do so.  It's loaded with all kinds of information and patient stories - great reading.  http://thebraingang.wordpress.com/

Cheers!

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

msuscottie

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Re: Writing a Book - - Looking for Stories and Quotes
« Reply #14 on: June 07, 2010, 02:57:28 pm »
 :)