Author Topic: Mourning the "old" you... embracing the "new" you  (Read 17988 times)

ppearl214

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Mourning the "old" you... embracing the "new" you
« on: January 26, 2009, 04:08:14 pm »
Hi all,

over time, I have heard of so many (myself included) that have a difficult time trying to adjust to physical, emotional, etc changes that we endure during this journey we didn't sign up to ride.

Many have a very difficult time trying to adjust to things, such as SSD-hearing loss, facial/eye issues, tinnitus, memory issues, balance, etc. 

Many here have offered such hugs and support and words of encouragement to those that have had or are having a difficult time trying to adjust to the "new" you (ie: post treatment, etc).

Many here have met me face to face and can see the war I wage as my body tries to fail me daily.  Beyond my AN issues, I have other medical issues, etc.  I use to be a runner/power walker.... now, I walk with a cane.  I use to be 30 lbs lighter... now, I'm a whole lot more heavier.  I use to be in the gym 6 days a week, doing cardio and circuit training. Now, I am lucky if I can lift a bag of groceries.  I miss my "old" me SO very much.... but, I've learned to adapt as best as I can to the "new" me... even if the body is not what I ordered.

As it pertains to AN's, based on those that post here or communicate with me directly, note the difficult time they have trying to embrace the "new" self they have become. 

Thoughts... remedies... words of encouragement, etc are so very welcome here. I am hoping you all will share here about trying to embrace the "new" you... and how you've learned to mentally/emotionally cope with it.

and for those here that are trying VERY hard to adapt to the "new" you.... share here... and we are going to support you as best as we can.

We've discussed this lightly throughout the threads on this site... I'm trying to centralize a thread here to use as a reference point for down the road, for those that may be having a difficult time... I/we can point them to this thread to let folks know that they certainly are not alone.  I'll post later exactly how I've embraced this "new" me, as much as I don't want the "new" me.... but, it is now who I am and I have learned to love it. :)

thanks all!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

jerseygirl

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Re: Mourning the "old" you... embracing the "new" you
« Reply #1 on: January 26, 2009, 05:44:54 pm »
Phyl,

This is one of the best posts I have seen on this forum. You just hit it precisely.  I was not my usual self during the recovery period and just kept telling myself that if I could recover after the first surgery, I can do it now. I also realized that the hardest thing to do for me was asking for help from others. I used to be so damned independent! Others, in turn, were so used to me being independent and never needing help. Now, I am less of a caretaker and do ask for help periodically to train everybody else around me that I have needs,too. My condition was such a shock to everybody. I just went from one extreme to another. Now I am somewhere in the middle.

I also refuse to accept my "new" self. It just makes me angry that I have limitations or cannot do things the way I used to. I keep searching for ways to overcome that.

                  Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

nteeman

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Re: Mourning the "old" you... embracing the "new" you
« Reply #2 on: January 26, 2009, 08:09:14 pm »
Phyl,

As one who faces his surgery tomorrow morning I know that this is going to be a turn in the road for me regardless of the outcome. I don't think I'll be the same person no matter how good the surgery turns out. Of course I hope the outcome will be good and the changes will be minimal -- I do not expect my AN ear to ever hear good again and the chances are 50/50 that I'll be completely deaf in that ear.  I have hope for the other aspects of post-surgery outcome and I believe I will adapt to whatever happens.

That said, as a 57 year old man who has kept him self in pretty good shape most of his life, and even before the AN, I'm still not the same me I was at 18 or 20 or 35 or 45. I wish I was but it just can't be. Things happen, you change, you get older, illness, money problems, job losses -- they all take there toll.  We have no choice but to make the best of what we are right now.

Cherish the memories of the 'old' you, don't mourn them, and yes, embrace the 'new' you.

Cheers,
Neal
Diagnosed 12/16/2008
AN 2.4 X 2.0 X 1.6 CM
surgery performed on 1/27/2009 Mt. Sinai Hospital, NYC
Dr.Bederson & Dr. Smouha
9:30am thru 5:50pm
http://www.facebook.com/neal.teeman

Tisha

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Re: Mourning the "old" you... embracing the "new" you
« Reply #3 on: January 27, 2009, 07:14:38 am »
Hi Phyl,

I didn't realize you had all the extra challenges.  You do seem to stay so upbeat and are quite the inspiration.  Although my symptoms are still relatively new, and may get worse as time progresses as the tumor swells, it still is a  "new me" for now.  Really, all I have to do is read the paper and it puts everything into perspective.  All the tragedies in the world and I realize that my hearing issues are insignificant and I can handle it just fine.  That's probably not the most healthy way to put it into perspective, but it does it for me (sort of smacks me in the face). 

Good thread.  Tisha
1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

suboo73

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Re: Mourning the "old" you... embracing the "new" you
« Reply #4 on: January 27, 2009, 09:02:12 am »
Hi Phyl,  There are so many thoughts racing through my head right now as i read this thread...  Although i am currently in 'Watch & Wait' mode and only have some hearing loss, in the past i had been so frustrated with a lack of explanation for that condition - i couldn't hear everything clearly that my children said, got frustrated in a crowded room trying to talk to others, and didn't always feel i was giving my all as a preschool teacher.  I remember when i read the MRI report, i felt actual relief knowing the reason for my hearing loss.

That was then, and this is now.  No going back to the 'before,' just like Neal said. (One friend said this same thing to me, but not with Neal's positive attitude...boy, did that drag me down!  As a matter of fact, i didn't respond to this person - don't want to spend the energy.)

I came to this site looking for information; what i see is so much more -the love and caring that everyone gives is indescribable!

In embracing the 'new' me, i find it helps to sometimes share my story with others. Even more so, I always try to listen more, knowing that we each have a story to tell.

And last but not least, i try to take one day at a time, with grace, patience and a little humor! 
Thank you, for all you do.

Sincerely,
Sue





suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

Jim Scott

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Re: Mourning the "old" you... embracing the "new" you
« Reply #5 on: January 27, 2009, 04:05:10 pm »
Phyl:

I think part of the problem many of us have adapting to our personal 'new normal' is that the majority of AN patients are middle-aged (or close to it) and have spent their adult lives without having to deal with the issues that currently confront them.  Now, they can't balance well or their face is numb on one side and alters their appearance so that they no longer 'look like 'themself'.  SSD is a big adjustment for all of us, with or without hearing aids (BAHA or otherwise).  Headaches and/or an eye that won't close properly and has to be lubricated almost constantly is quite a challenge for anyone, harder when you're confronted with the challenge at 40 or 50 years old and not quite as resilient as you were a few decades ago. 

AN 'complications' - whether from surgery or radiation - are problematic both physically and emotionally.  The physical can usually be dealt with at some level, although headaches can be maddeningly stubborn and SSD can only be partially alleviated with hearing devices.  Some of us have only minor issues to deal with and we tend to take them 'in stride', as it were, knowing how much worse off we could be.  Still, my SSD and (mild) tinnitus, the (apparently permanent) 'numb' spot on the side of my tongue, my occasional itchy 'dry eye' along with my inability to regain 100% of my ability to balance is a bit frustrating and yet, invisible to others and, compared to what some AN post-op/radiations patients suffer, hardly worth complaining about (except, occasionally, to my always-sympathetic wife).  Perhaps it's a bit easier for me because at my age (66 next month), I don't have to deal with work issues, run after young children, or beg off racquetball games.  :) Even so, I totally believe in optimism.  I never ask 'why me?'   As a Christian, I trust God to guide me through whatever comes and I realize that this life, in this body, is temporary and fleeting.  As the old Christian hymn says:  "This world is not my home".  Basically, like most Christians, I believe I'm just 'passing through'.  This belief helps me (and my wife, who has multiple health issues) deal with things we have to endure while we're in this body.  For the non-spiritual folks, simple positive thinking and steely determination can also go a long way.  I truly believe that our message boards are a great resource and a welcoming place for all AN patients, pre and post-op/radiation.  Because ANs are relatively rare, we're a source for sometimes hard-to-find information beyond the strictly clinical and of course, a very supportive 'family', of which I'm proud to be a small part.     

I've written before about my respect and admiration for those who deal 24/7 with some of the more difficult aspects of AN post-op/radiation problems, including facial paralysis and searing headaches.  I'm not so sure how well I would handle such things but I'm in awe of those who do handle these problems with grace and aplomb.   They're an inspiration to us all.  Although we very much welcome positive outcomes and success stories, I suspect that the day-to-day perseverance and strength of those AN post-op patients dealing successfully with 'issues' are the best kind of encouragement of all because they demonstrate a positive mindset in action.  They either see the 'light at the end of the tunnel' (whatever that may represent) or have made peace with their 'condition', especially if it is intractable, as, unfortunately, some AN post-op problems can be.  Either way, these folks show us all how it's done - and I salute them.

Jim
« Last Edit: January 27, 2009, 04:27:29 pm by Jim Scott »
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.

Larry

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Re: Mourning the "old" you... embracing the "new" you
« Reply #6 on: January 27, 2009, 04:17:51 pm »
Well said guys.

I am very lucky to have a very supportive family, especially my wife who has to put up with a lot of "pardons" and moods through headaches. I also have two little dogs that are always there for me even though they want to play 24/7, they are a great comfort.

It is hard to adjust to the person post AN but as you say Phyl, hust got to accept it and get on with it. Doesn't stop kicking the door down in frustration from time to time but hey, I can live with that.

laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

MAlegant

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Re: Mourning the "old" you... embracing the "new" you
« Reply #7 on: January 27, 2009, 08:01:18 pm »
Hi all,
This is exactly right.  There are things that physically remind me that I've gone through this and emotional things and both have changed me.  Both of the changes cause me to occasionally "kick the door" but in the end I have chosen to live my life anyway and do the things I want to do anyway and if my face never feels the same I guess I'll just get used to it.  As for the things I can't do, there aren't many, but I'm dealing with it.  And this is the only place where everyone gets it!  How cool is that?
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Jeff

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Re: Mourning the "old" you... embracing the "new" you
« Reply #8 on: January 28, 2009, 09:25:54 am »
Great topic and wonderful thoughts.............

As one going through a period of deep "mourning," I needed to read this. It has been nearly 2 years since my surgery with catastrophic complications. I realize that I am fortunate to be alive and I am thankful for that. And my doctors are "amazed" that I can even walk, let alone work. These past 2 years have been a continuous struggle to regain as much as I possibly could. It seems now that I have regained what I am going to get. And it's tough to reconcile my thoughts to that fact.  I have been released from care by the neurosurgeon who installed my shunt. This is a good thing, but that just drove hone the point that this is how I am going to be.

Like Jim, I believe that I am "passing through." Right now, I am just trying to make the best of it.  I look forward to reading your thoughts and comments.

Best wishes,

Jeff
NF2
multiple AN surgeries
last surgery June 08

Soundy

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Re: Mourning the "old" you... embracing the "new" you
« Reply #9 on: January 28, 2009, 10:54:37 pm »
As soon as I think I know the new me I change ...so I guess I am evolving me

I think it was Scott brought up age... at 47 and multiple health issues going on I think that has made
acceptance harder for me ... up until surgery "Bennie" was just there... now the after effects of his removal 
are  daily problems  to deal with... hoping with a little more time I will find that place that is comfortable
enough for me to say...I'm alright ... and fully mean it
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Syl

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Re: Mourning the "old" you... embracing the "new" you
« Reply #10 on: January 30, 2009, 02:41:35 pm »
I'm almost 8 months post-surgery. I don't want to say that this is what the "new me" is like just yet. I'm going to wait for my 1st yr anniversary before I can be sure of who the "new me" is.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

MAlegant

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Re: Mourning the "old" you... embracing the "new" you
« Reply #11 on: January 30, 2009, 04:36:18 pm »
Right, I'm the "evolving me".  Which I will live with until my one year anniversary (like Syl), and then I will still be evolving.
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Captain Deb

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Re: Mourning the "old" you... embracing the "new" you
« Reply #12 on: January 30, 2009, 05:58:04 pm »
OOOOhhhh The old
Denial
Anger
Bargaining
Depression
Acceptance

thing.  I guess I found this forum or re-found it in it's modern form at about my depression stage and it helped me move to my current acceptance stage.  Dr Love and I entertained dreams of sailing off into the sunset during our golden years--literally sailing off on a 40 to 50 footer.  But with chronic headaches and now financial issues brought about by my being unable to contribute financially to said dream, things have certainly changed.    I can't imagine being caught offshore in a gale with a frigging migraine!!

My first grandson was born the night before my surgery and I cannot imagine life without him or his little brother.  Even though they aren't biologically mine but are my step grandkids,  it would tear my guts out to leave them ashore for months or a year at a time and go off sailing now and not see them.  So life does change.  The whole lemonade thing.


As a fiesty feminist lady yacht captain artist who has made her own way in life and never been dependnt on ANYONE for ANYTHING (and didn't even get married till I was 46 fer gosh sakes,) I am now totally dependent on my dear sweet husband financially, emotionally and just about every which way imaginable. This upsets me to no end sometimes, but then I just get on here and I blow off some steam or I call Phyll or something.

The New Normal stinks sometimes but its all we got and it sure beats the alternative. Just gotta look for the pony in the room fulla pony poo!!  Hee!! Hee!! Hee!!

Capt Deb
« Last Edit: January 30, 2009, 06:57:13 pm by Captain Deb »
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

NancyMc

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Re: Mourning the "old" you... embracing the "new" you
« Reply #13 on: January 30, 2009, 06:49:06 pm »
I've been trying to tell my friends and family that I might not be the same post-op.  They all assume that patients coming out of surgery are improved; why else would they go in?  Even Dr. McKenna said in front of my good friend, "No one every says they're better after surgery."  But he's in denial.  They all say, "I'm sure you'll be fine."  And I agree, as I've got a great team in Boston.
At least my children understand.  I have a college classmate whom we've visited many times in Scotland.  She had a grapefruit-sized meningioma removed in emergency surgery with all the possible side effects . . . walks with a cane, SSD, facial paralysis, has to drink from straw and dab eye with tissue, apply eye drops, etc.  So, I can tell them that I could have similar side effects.
I am worried about the outcome four weeks from tonight, but I've coped with rheumatoid arthritis and osteo arthritis, SSD, balance issues and tinnitus, so I'll put in my best effort to regain as much function as I can.
You will be my inspiration.
Thank you.
Nancy
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

salamander

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Re: Mourning the "old" you... embracing the "new" you
« Reply #14 on: January 30, 2009, 07:09:27 pm »
I am now at three months.  I am also evolving and trying to be patient while my body determines what the "new me" will be.  I am fluctuating between hope for an improved outcome over time and striving for acceptance of what may not improve.

I am amazed at the broad range of outcomes that are experienced with AN Surgery - from practically skipping out of the hospital to life changing effects.  I did a lot of research prior to my surgery, but still felt unprepared for my outcome.  I think the reality was an outcome that I was totally in denial about as an even remote possibility.  The hearing and the balance weren't terribly "visible".  However, losing my beautiful smile with a yet unknown outcome has been very hard and difficult to even comprehend.  I hate seeing someone I know for the first time because it is such an immediate expression of sympathy and awkwardness.  I'm trying to adjust my thinking to considering all these new "features" to be badges of honor that allow me to "flaunt" that I survived brain surgery!  (sometimes it actually works  :'(  )

The headaches are also hard to understand.  I have different headaches every day.  I hope that it is still the healing process.  Randomly, when I get up from sitting down, I have "brain freezes" after taking a few steps.  I have learned to just stop and stand while they slowly release.  "never be in a hurry" is my motto.  Sometimes the back of my head hurts.  Sometimes my brain throbes inside my skull.  If I drop something on the floor I debate how important it is to pick it up and leave stuff on the floor for days until I feel up to dealing with the head pain of bending down to pick it up.  How to describe the levels of pain to a headache neurologist seems daunting.  (I will be seeing one later this month).  I guess I'm trying to decide what to just "suck up" and what to try to address with drugs or therapy.

Given all of that, I'm incredibly greatful to be alive and to have retained all that I did.  I am humbled at how kind everyone in my life has been.  Thanks for starting this thread.  I think it feels good to just vent and contemplate as we try to describe the difference between the old and new.

Samantha
2.9 cm right side AN;
Retrosigmoid/Sub-occipital surgery 11/08;
SSD(w/tinnitus), facial weakness, dry eye, eye weight, headaches.
Some movement of face at 7 months

 


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