ANA Discussion Forum
AN Community => AN Community => Topic started by: MDemisay on February 05, 2012, 02:32:33 pm
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Hi Everybody,
Lots of people will agree and disagree here! But in 2004, I named my tumor, it helped me greatly, really! It helped me gain control out of something at the time, I had no control! My tumors name was "Irving".
Since then in 2004, I had it operated on and sub totally cut back to where I was calling it "Ir". In 2011, it has grown back a little, now to preserve my sense of control before I nuke it, I have renamed "Irv".
I wonder how the rest of you feel :)! Does anybody care to comment here?
I don't mean to offend anyone, I'm just looking to help people by conceptualizing shrinkage before it actually occurs!
Feel better newbies, help is on the way!
Mike
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Mike
Right after I found out about my AN I named it "Alvin". Now all of my family and friends know what I am talking about. Some even ask how Alvin is doing. Naming it gives it identity and in my case helped me to deal with the intruder.
TJ
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I'm the culprit around here that coined the term/name "brain booger." :) Yep, my blob of an AN still keeps its name... the "brain booger."
Phyl
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"Bob" is the name of my dark passenger. That way folks can ask, "What about Bob?" Also, Bob was the evil spirit in Twin Peaks.
"Kill Bob" rolls off the tongue about as well as "Kill Bill."
-Tod
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Thanks for responding everyone! I knew that I was on the right track with the naming from all the responses I got when I initially came up with the idea in 2004. Back then I got a lot of responses, believe me! Some people were pissed that I would give an unwelcome invader in my brain a name. At the time they thought that personalizing it was harmful to one's psyche, imagine!
I was thinking about naming it "Ignatz" you know like the rat that used to throw bricks at Krazy Kat's head, but every time I thought of it, I just couldn't get that cartoon image out of my head! I think "Irving" was a weird enough substitute. Besides, the short form of that was "Iggy" which sounds like Squiggy (the Laverne and Shirley character)!
What do some others think? I think conceptually, we all have to think, how can I turn something depressing into something positive? This is where, in my estimation, we all have to begin! An acoustic neuroma can be a daunting name to a lay person. Reduce it and one begins to take the power back, and one can make it grow even smaller or for those of us that are lucky, remove it all together!
I wasn't so lucky! I feel truly blessed to have you on my side by association! Let us find strength in each other! Who knows, maybe someday we can meet and help each other! I can only use my left hand, but I may learn to sign using only one hand! What wonders and positive feelings can we all create, if we use our minds?
Mike
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I haven't named mine but my hair dresser has. Everytime I walk in,he asks how Herman is doing. ;D
I think I would rather name mine TOM -
T - tormentor
O - of
M - mine
Karen
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I haven't named mine but my hair dresser has. Everytime I walk in,he asks how Herman is doing. ;D
I think I would rather name mine TOM -
T - tormentor
O - of
M - mine
Karen
I like this!
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Mine is gone, so it takes no power from my life anymore!!!!
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I'd rather not dignify my AN with a name, but I would like to call him Gonzo -- and soon!
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For your consideration:
How about Quatto! Like in the Scifi movie that Arnold Shwartzenneger was in the one where the alien was like a growth coming out of the human hosts body!
That movie was made after I had had my surgery, or else I might have chosen that one! As I remember, Quatto was quite large though!
Mike
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Never named my AN - but maybe it's because it didn't hang around long enough. It was only 6 weeks between my diagnosis and my surgery.
Jan
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Jan,
I appreciate your good news and wish you luck! Can you see why I want to have "Irv" gone? Over the recent weeks he has caused me a lot of heartache and concern with his reemergence!
I don't know what to do and not knowing is costing me lost sleep, self respect, family respect, and signifigantly affects my mood. I would not wish this on my worst enemy.
Right now I want to target by any and all means the little bugger and delete him! Wish that it was so easy!
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I don't know what to do and not knowing is costing me lost sleep, self respect, family respect, and signifigantly affects my mood. I would not wish this on my worst enemy.
My feelings exactly!!!! :'(
Karen
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Within hours of diagnosis Bennie got his name ... I was alone when I got the diagnosis and had an hour long drive home in which I talked to myself and made a speech for my husband ...he came in and asked what the doctor had said about my sinuses ( my doctors nurse had told me I needed to go to an ENT because I had some over growth of tissue in my sinuses ... she didn't want to tell me I had an AN that needed to be looked at closer so she lied) ...anyway , my careful planned speech went out the window and I blurted out I have a brain tumor and scared him half to death ...I told him things were OK and told him it's name was Bennie and we decided that until we knew more we wouldn't tell the kids
it was a way to cope with a known intruder ... I felt violated by him at first but by the time of my surgery 3 and 1/2 years later he was just an annoyance ... naming him Bennie also gave a way for friends to mention him with my girls around ... their aunt was very sick and bed bound ... they always worried about any new thing that cropped up with Kathy and the medical jargon made it worse...
they didn't know about Bennie until about 2 weeks before I had surgery ... someone could ask how's Bennie and we could talk without upsetting the girls ... Kathy died 4 months before I had surgery at the age of 42 ... my girls were real clingy at 7 and 9 when I had the surgery ...they were worried that something would get me or their Dad ... when we told them about Bennie it made it easier for them to know that Bennie was an unwelcome guest that was being evicted ...acoustic neuroma , vestibular nerve , vestibular schwannoma ,
vestibulocochlear nerve , trigeminal nerve ,brain stem involvement and all the other words that were thrown at me would have sent them into a tail spin they didn't need ... Bennie as a term was easier to deal with in front of them and covered all ..
naming it also gave me power and ownership over it ... I had Bennie he didn't have me became my mantra ...I didn't let the Bennie Bumps as the little issues that came up were known as ... new hearing loss, dizziness, etc... he was a tenant that was going to be evicted when time was right .. the end
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Soundy,
Right on gir!l Sounds like naming your neuroma was a positive experience for you! I can not tell you what awesome power I feel now. Irving was reduced before to Ir and grew a little and became Irv.
Well now Irv has to go completely!
I was comfortable sharing space in my brain with him (and I'd even forgotten him) but now that he has taken to growing again, I have to give him his walking papers!
Three cheers to gaining power over these dreaded things! We have to take back our power, people! My family thinks I am crazy. I assure them and all of you,I am not.
Acoustic neuroma, sounds too exotic! I assure you it is not! It is not cute either (naming it), it's just a spiritual method (mind over matter) I use to tell myself that a little unwelcome intruder has come into my life once more to teach me something. What that is I don't know! But opportunities open up from misfortunes too, perhaps I have a little more time to learn sign language.
Perhaps, I will meet more people as I seek to be rid of it. Meeting people, sharing stories of triumph, becoming more prayerful and less satisfied could be a good thing too.
Why just this afternoon, I had a long conversation with a work buddy of mine that I hadn't talked to in 11 years. He told me of holistic methods of treatment such as forming prayer circles and praying with big Spanish candles. Perhaps, his call was a sign perhaps it was not.
All I know is he called me from out of the blue and he seemed genuinely concerned and helpful. Maybe he was pulling my leg, maybe not. We talked and talked it was nice to hear from him again. I felt uplifted for a while! That's a good thing. Cheer up people, change is coming! We should all feel relief soon, be well all have a nice weekend!
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family and friends that knew I named it thought I as crazy too with my methods of dealing with alot of AN issues as they came up ...mainly naming it ... but I figured that what got me over bumps and didn't hurt anyone were all valid ... have a good weekend
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Some of my friends named my 2 tumors - Itsy and Bitsy. I'm not sure which is which though ;-)
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Don't under estimate the power of prayer. ;)
Karen
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People always asked me how I could eat so much and stay thin, so I started telling them that I had a tape worm. Then I named it Freddy. When I found out I had an AN I told everyone Freddy had migrated to my inner auditory canal. Freddy has been radiated this week and I hope he is dying a slow death.
Hopefully you can soon say RIP to IRV.
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No name for it but I frequently refer to it as "my little visitor" or the "the hitchhiker". The word "Tumor" sounds too ominous.
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No name for it but I frequently refer to it as "my little visitor" or the "the hitchhiker". The word "Tumor" sounds too ominous.
that's it ... Tumor is just so threatening ... Bennie , the hitchhiker , Freddy etc ... they are not ominous or threatening sounding ... not to take from the seriousness of things , it is just a coping issues ... and naming seems to help many in coping
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Soundy has captured the zen or the flavor of this thread! Congratulations it seems as if we all have to learn how to "conceptualize" shrinkage and not let these little things affect our lives like they have! Whether you are just starting out in the beginning or are in the middle or at the end!
It seems we all have something to gain here....perspective!!
Whether it is actual survivors, caregivers, or family and friends everyone stands to gain something from our journey why not deal with it humorously?
Dealing from a position of strength is vastly better than dealing with this from a position of fear!
Good luck with this challenge everyone!
Mike
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The word "Tumor" sounds too ominous.
This is SO true. It took me at least one year post op before I would call my AN a "tumor" and I couldn't stand it when others used that word.
Every time my neurotologist would mention my tumor, I'd immediately correct him and say "you mean, my acoustic neuroma". Man must have thought I was crazy ::)
Jan
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My theory about naming it has one goal- eventual elimination or in my case shrinkage.
If you think you are comfortable with that name then so be it!
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Hello Again Everyone,
It's has been quite a while since I bumped up this thread but I figured I would just give the newbies out there something to conceptualize and think about as you begin this fascinating AN journey we all have been stuck with. I would have liked to meet you under more pleasant circumstances than this, certainly!
But now that you are here take it as a challenge! Can you come up with a name for your little bugger as some of us have already? There should be a prize for the most imaginitive name at the next biannual conference.
I have my own theories about supplying it with cutesy names, that is something not for me!
Trying to inspire confidence not fear!
Mike
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Everybody,
Everyday as the death of "IRV" comes closer (June 11th) , I am feeling more and more powerful and in control of my destiny which is of course to be healthy.
I imagine the radiation in my minds eye as shrinking the tumor to one tenth the size it now is.
As some of you know, my wife had a bout with breast cancer back in 1992 this year it will have been 20 years without a reemergence of CA.
With this treatment that I am about to undergo (one dose), I can imagine her intense frustration with me over my reluctance to have this simple thing done one time. Whereas, she had to undergo about 10 treatments of radiation. Believe me she came back from her treatments with burns (which after a time faded).
On June 11th, hopefully we can each be done with radiation forever!
Mike
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While looking for the cause of my dizziness the MRI revealed two different types of tumors. To keep them straight I named the Meningioma on the left side of my brain "Lucy" and the AN on my right ear "Ethel". Today I schedule July 18th to say goodbye to Ethel! WhooHooo!
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Indy,
Wow! A person who appreciates Lucille Ball, here I thought we were a dying breed. Myself I got rid of my AVM's in 1974 their names were Moe, Larry and Curley.
Before I thought that "Irving" (my AN) was a separate problem, now it seems that because of some dental x-rays I had between 2004 (I had "Irving" cut down to size) and now 2012 that "Irv" has grown back! ----Egad! Such is life!
It certainly teaches us that life is precious, so slow down and smell them once in a great while!!!
Are you in treatment for your meningioma (Lucy)?
Mike
Thank you for sharing your story !