Author Topic: Happy Endings/New Doors  (Read 6024 times)

Debbi

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Happy Endings/New Doors
« on: April 11, 2008, 07:47:34 am »
Okay, so I want to start a new thread here about happy endings and new doors being opened.  I've been touched by so many of your stories and what I think I've taken away is that an AN may very well be life-changing, but it doesn't have to be life changing in a bad way.  So, I'd like start a thread where we can share out positive stories - what good things have come out of this for you? 

Selfishly, as I approach surgery, this will help me to maintain a positive attitude.  And, more altruistically, I hope that others will take away some comfort, too.

Thanks in advance to all who want to share!

Debbi - waiting for my happy ending...
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

ppearl214

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Re: Happy Endings/New Doors
« Reply #1 on: April 11, 2008, 08:04:34 am »
debbi,

I'm not sure if you have heard of this gentlemen or the message he shares with soooo many others... Randy Pausch.  I have been following his exceptionally tough (and painful) journey.... I have listened to him speak.  I have seen him interviewed. I have seen how humbled he is by all the attention that he attracts.... but, to me.... all based on his positive message about living life..... life is what you make of it.  We accept what we cannot change and make the best of it as best as we can.  I love his analogy of Tigger the Tiger vs. Eeyore.  In my life, I choose to be Tigger... knowing that I must deal with what lays before me in my life journey... and accept with what may come my way and make the best of it.  His lecture:  http://download.srv.cs.cmu.edu/~pausch/

I am a "happy ending" in my AN journey... I still struggle with my other medical whoas.... but each day, I take it step by step, inch by inch.. and do the best I can......

I'm tickled you are finding inspiration in others here on the site... as do I.  I send you huggles for wellness, mental strength to help you through... bad jokes and watered down drinks, just in case.... but, I give you a shoulder and good ear and the best support I can.

A terrific mantra shared with me by my co-worker, who has also been very ill....

"Loving heart
Clear Mind
Healthy body
Peaceful soul
Blessing one and all....."

Hang in there debbi!
Phyl
« Last Edit: April 11, 2008, 08:06:10 am by ppearl214 »
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Pembo

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Re: Happy Endings/New Doors
« Reply #2 on: April 11, 2008, 10:10:48 am »
My AN was life changing in many ways. The positive I can think of is I am more assertive. I learned to get tough with the doctors. I learned that if you ask for an appointment asap and you don't back down, they'll find you a spot. I learned that if I believe in something I can get others to listen. I've also learned that I have a hard time listening to people complain and complain and not do anything to change their situation.  I've become more proactive instead of reactive and encourage others to do the same. I've also learned how to research on the internet which has come in very handy since my son's diagnosis of Asperger's syndrome.  I found confidence in my abilities. I have become more empathetic and have learned to listen to people.

This site has helped me alot. It's good to know you are not alone and it's good to help others in their AN journey.

All that said, could I have lived without knowing all this and not had to endure the AN journey? You betcha! lol
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

Kaybo

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Re: Happy Endings/New Doors
« Reply #3 on: April 11, 2008, 10:36:23 am »
Where do I start?  I think (hope) that I have conveyed over and over again that I have an incredible life...is it exactly what I thought it would be before I had AN surgery?  Nope, not at all!  However, I think we have to just take whatever we get & go with it!  I love the saying, "If life give you lemons, make some lemonade!"  Since it seems so many of us enjoy gardening and digging in the dirt, my new favorite is, "A flower has to go through a LOT of DIRT before it can bring others joy!!"  Love it, Love it, Love it!!  I think that is my new personal motto!!!  I may have changed it a bit, but that is how I want to say it!!
When we first went through this whole AN thing, Dave & I said that if I could just help ONE person, then it would be worth it -- hopefully, I have done that!

K

PS - Phyl~I have definitely been inspired by Randy Pausch also.  Have you heard anything about him recently...I wonder how he's doing?
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!

ppearl214

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Re: Happy Endings/New Doors
« Reply #4 on: April 11, 2008, 11:16:46 am »
PS - Phyl~I have definitely been inspired by Randy Pausch also.  Have you heard anything about him recently...I wonder how he's doing?

Hi K!  :-*  ABC News - "20/20" did their special on him the other night... they showed a short interview that Diane Sawyer did with him last week. He looked ok.  More visible weight loss... slight twinkle missing from his eye.... but the mental strength in his words....honestly, I don't know how he does it.  His will to live, his drive, the immeasureable love of family and friends... his humbleness in his words of how world wide support has reached out to him.... honestly, I am just floored. I know I have a great deal of mental strength... but, if I could have 1 iota of his mental strength.... I'd be a very rich woman.  Still trying to keep close tabs on him as our journeys cross in somewhat similar paths. 

sorry debbi, just wanted to answer K's questions.....
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

leapyrtwins

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Re: Happy Endings/New Doors
« Reply #5 on: April 11, 2008, 11:33:04 am »
Deb -

I've learned to count my blessings and to appreciate life more.  Yes, I had an AN, and yes, I'm SSD, but there are a lot of worse things I could be.  When you initially hear brain tumor, a lot of really scary things go through your mind and you realize that there are people every day who get news much worse than an AN.

I have learned to be more thankful and to express that thankfulness to others.  I think I thank my doctor every time I see him - probably overkill, but I realize how truly lucky I am.  And I never want him to think that I don't appreciate all he's done for me. 

I have been inspired to connect with others both through this forum and through the WTT list and I want to do anything I possibly can for people who are in the same boat as I am.  There have been so many who have eased my "journey" and I want to ease the journey for others.

I try to find humor in all situations and I find that I'm a much more positive person.  I find myself smiling now; I'm happier.

I realize that I am braver and stronger than I thought I was and that I can overcome situations that I doubted I could overcome in the past.

I have come to look at my AN as a gift, not a problem.  It's like K said under another topic, there is a reason for everything and I truly believe that.  I had an AN for lots of reasons and I think I'm only beginning to tap the surface of what will be possible in my life.

Jan

Oh, I almost forgot to say, that Deb I am confident you will find your happy ending.  You might have to be patient, but you will find it  :)


 



« Last Edit: April 11, 2008, 11:34:57 am by leapyrtwins »
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Kaybo

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Re: Happy Endings/New Doors
« Reply #6 on: April 11, 2008, 12:21:38 pm »
Jan~
I just loved what you wrote -- I am so gald that you think you are more positive and HAPPIER!!  You are a strong lady!
<3  <3  <3  <3
K
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!

Jim Scott

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Re: Happy Endings/New Doors
« Reply #7 on: April 11, 2008, 12:48:05 pm »
Hi, Debbi:

Great topic!  Thanks for posting it.  :)

I've learned to be more compassionate toward others, especially those suffering with physical challenges, something I may have overlooked prior to having a physical challenge of my own.  I've also learned to appreciate my relative good health and to realize that I'm quite mortal.  I deeply appreciate the love of my wife of almost 38 years.  She kept a near 24-hour vigil either at my bedside or nearby (she slept on a couch in the nurses lounge) while I was in ICU (4 days).  I wasn't all that attentive to her when she was hospitalized for back surgery (in 2005)  yet she never remonstrated with me but was just happy to see me when I visited her, which was often, even if my presence wasn't constant.  She showed me what love and devotion look like, and not for the first time, either. 

I've learned that prayer is helpful on many levels and that a positive attitude, as I had, pre-surgery, is also a great motivation to get better.  I simply expected to be O.K. following surgery (I had a fabulous neurosurgeon with thousands of AN surgeries on his resume) and I was very anxious to regain my normal life and put this episode behind me.  I did balance exercises, walked plenty and simply 'fought' my way back to health.  I'm fine today and I'm pleased to share my 'story' with others who may benefit from it, as I trust you will.  :)

Jim 
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

leapyrtwins

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Re: Happy Endings/New Doors
« Reply #8 on: April 11, 2008, 03:18:10 pm »
Jan~
I just loved what you wrote -- I am so gald that you think you are more positive and HAPPIER!!  You are a strong lady!
<3  <3  <3  <3
K

Thanks K.  You are also positive and strong.

You are happy, too, but that might have been how you were prior to getting your AN; I'm not sure.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

nancyann

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Re: Happy Endings/New Doors
« Reply #9 on: April 11, 2008, 04:46:14 pm »
I am definitely in a better place for having had all the complications - I NEVER thought I would say this ! !

I don't 'sweat the small stuff' anymore.

I'm taking MUCH better care of myself.    I've let go of 'grudges', guess I've let go of alot of the past that I allowed into my present.

All in all, I am much happier post - AN than pre - AN. 

Do I wish this never happened ?  Only if I could have gotten to where I am now, which I don't think would have happened without the AN complications.
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

sgerrard

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Re: Happy Endings/New Doors
« Reply #10 on: April 12, 2008, 12:18:01 am »
I am definitely in a better place for having had all the complications - I NEVER thought I would say this ! !

And I never thought I would hear you say that! It is great to hear, both as an indication of your improved well-being, and as an inspiration to all.

I have gained two main things from my little AN. I interact, communicate, and relate better with other people; and I am far more aware that life is short, and there is no time for grudges, grumbling, and hesitations, you must try the things you you are tempted to try, and see what happens. In that direction lie the happy endings.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Debbi

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Re: Happy Endings/New Doors
« Reply #11 on: April 12, 2008, 06:14:13 am »
Thanks so much, Steve, Nancy, Kay, Jan, Phl, Jim, and Pembo - this is such a gift.  For me, and hopefully for others.  You are all my heros!

And, I know there are more amazing stories out there, just waiting to be told.  Mine will be one of them.

Debbi - humbled and hopeful

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

Jeff

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Re: Happy Endings/New Doors
« Reply #12 on: April 13, 2008, 05:37:25 pm »
It's great to read so many inspiring stories and see such positive outlooks.Recently, I have spent a great deal of time reflecting on the past 6 years since I was diagnosed with NF2. In that time period, I have gone through 3 AN surgeries, and the last one left me deaf.

I have been a teacher for 20 years. I taught band for 16 years and thought that my diagnosis meant the end of my career. Thankfully,withsome hard work and great support from my family and friends, i have moved to another position within my school district.

Last Spring, April 18 to be exact, I had my third AN surgery. I had many complications and nearly died on more than one occasion.

Thankfully, I have recovered well. I can now do most of the things that I want to do.

I am most thankful for my wonderful wife and great daughter. They have taken great care of me. AndN while I knew that my coIworkers were great, I have been humbled by their kindness and their generosity. They have really taken care of me, at both work and home.

And, I have gained insight into how people perceive those who are different (I look funny, walk funny,talk funny, and can't hear a thing). Generally, people who don't know me or didn't know me aren't sure about me (I think that my persecution complex is showing :).

I have been forced to find new interests (anybody want to buy my 300+ record albums?). I think that nurturing my new interests has helped me to improve cognitively.

I also think that I have a renewed appreciation of people and the things things that make them unique. Sometimes I feel like George Bailey in It's a Wonderful Life.

Life is good!

Take care,

Jeff
NF2
multiple AN surgeries
last surgery June 08

Kaybo

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Re: Happy Endings/New Doors
« Reply #13 on: April 13, 2008, 05:40:08 pm »
Jeff~
Although you have had it really rough, what an inspiration to us all!!

K
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: Happy Endings/New Doors
« Reply #14 on: April 14, 2008, 12:22:51 pm »
Jeff -

You are amazing.  I am already grateful that this AN has given me an oppotuntiy to "meet" people like you and all the other courageous and inspirational people on this forum.  I hope to add my own "doors opened" in the future - but for now I already know that I am gaining something pretty big and pretty special.

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