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Author Topic: 3 yrs Post-CK and thriving!  (Read 10320 times)

ppearl214

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Re: 3 yrs Post-CK and thriving!
« Reply #30 on: May 26, 2009, 02:33:16 pm »
Quote from: tsl on May 26, 2009, 12:16:28 pm
I still remember the first words that you spoke to me:  "We are going to get you through this." 

You remembered... and you just put a very warm smile on my face. Theresa... thank you. Truly!  :-*   I am very, very proud of you... you have truly come a long way and thank YOU for ALL you do for AN'ers...   :)

Phyl
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ppearl214

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Re: 3 yrs Post-CK and thriving!
« Reply #31 on: September 03, 2009, 02:34:57 pm »
well, JKL will enjoy this. I moved my own thread to Post Treatment forum :D

Update:

today, I had my 3-1/2 yr follow up with my radio team at Beth Israel. Found out some news I didn't know.. and news I already knew :)

1.  Was informed today that my AN was actually touching my brainstem at time of treatment.  :o  :o  Actually, for me, I'm glad I found out after-the-fact!
2.  Hearing still at same level as pre-CK.  Everyone at BI is thrilled serviceable hearing same as pretreatment and was saved (my personal goal in choosing CK)
3.  AN was touching brainstem pre-treatment.. and now it isn't (nice gap it's got going), thus, further AN shrinkage (now stablized at 8mmx6mm) since treatment.
4.  Radio-onc feels that based on my AN today.... it has "plateaued" (how DO you spell that?) in its reaction to radio/CK and should not do anything further from this point onward.
5.  Sucker looks dang necrotic :)
4.  They acknowledge they owe me dinner and drinks for being their AN CK poster child.

For me... it's done. Yes, will see them same time/same place next year but as of now... my AN journey has officially ended. They do not forsee any further hearing issues etc due to the AN.

I'm done.  

I'm blessed, as I know there are many that do or do not follow in these footsteps, but know that my determination to be here for all those enduring an AN journey does not end.  I pray that there will never be another AN in my head (G-d willing) and I remind myself that each medical journey (regardless if AN, Cancer, broken bones, etc) is so very unique onto itself.. and I don't take my good news lightly, as I know there are many that do not have such great news provided.  But, the good news for all of us is this... we are here. We are on this good green earth, here for each other. And regardless of my outcome or other's outcomes, we are here for each other and that, to me, is the greatest blessing of all.

For those that have been here since 2005 when I began my AN journey and for supporting me the way you have... I very humbly say a BIG thank you. And for new found AN "family", I remain here for you as well.

Wellness wishes to all.  Just wanted to share the news.  I'm overjoyed, overwhelmed... and now, to get the rest of me fixed and back on track.

Hugglez to everyone!
Phyl
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Kaybo

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Re: 3 yrs Post-CK and thriving!
« Reply #32 on: September 03, 2009, 03:33:10 pm »
GREAT NEWS, phyl!

love ya!
k
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Great life!

Jim Scott

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Re: 3 yrs Post-CK and thriving!
« Reply #33 on: September 03, 2009, 03:58:02 pm »
Phyl ~

Wow!  'Congratulations' seems too mild to express the happiness I'm feeling on reading your fantastic 3½ year post-treatment results.  Bravo!  May you continue to thrive - and hang around here a bit longer.  :) 

Jim
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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.

nancyann

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Re: 3 yrs Post-CK and thriving!
« Reply #34 on: September 03, 2009, 05:01:06 pm »
Wonderful news Phyl,  couldn't have happened to a sweeter person ! !
Always good thoughts,  Nancy
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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
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2.4 Gm. Platinum chain 2017
right facial paralysis

Sheryl

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Re: 3 yrs Post-CK and thriving!
« Reply #35 on: September 03, 2009, 08:14:46 pm »
WOWEE!!  We are both so happy for you.  Too bad we couldn't have "arranged" our Boston visits together. 
Warm wishes,
Sheryl & Larry
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9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

Mark

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Re: 3 yrs Post-CK and thriving!
« Reply #36 on: September 04, 2009, 12:02:54 am »
Phyl,

congrats on a terrific update report!

Great outcomes are always wonderful to hear, but even more so when they happen for someone as special as you who gives so much encouragement and support for people on this forum.

As they say "you rawk"  :D

Mark
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CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

yardtick

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Re: 3 yrs Post-CK and thriving!
« Reply #37 on: September 04, 2009, 07:31:29 pm »
Inch by inch and day by day..............you made it GIRL  ;D

Anne Marie  :-*
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Our we having fun YET!!! 
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ppearl214

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Re: 3 yrs Post-CK and thriving!
« Reply #38 on: September 04, 2009, 08:44:47 pm »
thanks all! Truly!  And Sheryl, I wish I had known as I was at B/W today meeting with Dr. Claus for a different reason but she took a look at the AN and was absolutely tickled the way it looked.  Was great to see her smile about it.

Yes, dear AnneMarie... "day by day, inch by inch...".... I hold true to my mantra and it certainly has helped me many a day when things get rough.  Hugglez to you! You know it!

thanks again all for the congrats.  I really appreciate it.

Phyl
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hevreh

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Re: 3 yrs Post-CK and thriving!
« Reply #39 on: September 05, 2009, 01:12:28 pm »
Hi Phyl;

Your journey inspires us and was a key factor to follow your lead. Glad to learn our docs at BIDMC find you a done deal!!
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cindyj

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Re: 3 yrs Post-CK and thriving!
« Reply #40 on: September 07, 2009, 08:29:02 am »
Awwww, Phyl, great to hear that "official" news from your docs!  Thanks for sticking around for all of the rest of us :-*

Cindy
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rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

ppearl214

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Re: 3 yrs Post-CK and thriving!
« Reply #41 on: September 07, 2009, 05:49:58 pm »
thanks all for the wishes... and yeah, you're kinda stuck with me now! :)

Phyl
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Larry

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Re: 3 yrs Post-CK and thriving!
« Reply #42 on: September 08, 2009, 08:46:03 pm »
Been off the forum for a while but thats great news girlie.



Laz
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