ANA Discussion Forum
Archive => Archives => Topic started by: thecakes on March 14, 2006, 07:23:46 am
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Iworked in a factory. When the big news came out, the talk about " the tumor was as big as a "grapefruit". I thought this was funny. How can a brain tumor be that big? My skull is'nt large enough to accomodate that baby.
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now that is funny! :)
Ok, stoopidest thing said in my office about mine and treatment... "will she foam at the mouth after her radiation?" ;D They wish!
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I liked the "so were you surprized?".
"No, actually, I've been planning all my life to grow a tumor in my brain." Duh!!!!!!
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eveybody kept saying "no ****' like it was some big joke..DUH who'd joke about having a brain tumor?
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Lets see...
Join the military....check
Have Kids..... check
Finish my degree.......check
Brain tumor.......check !! :D
People are amazing...
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he he he...I love you guys. You make me laugh. This is a good thread.
Laughing is good.
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Thanks for the laughs! :D
Needed them today!
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MRI to confirm the AN diagnosis: $1500.00
Surgeons bills for AN translab surgery: $20000.00
Hospital bill for AN translab surgery: $73,000.00
Having a co-worker ask (to my face!) "Did you die?": Priceless
There are some things in life that insurance will cover; for the rest of coping with AN, there are the stupid! ;D
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Cakes - You always come up with the best threads!
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My 18 month old grandson, kept walking around to my left side, pointing at my scar and saying "Boo-Boo" for the first month after surgery.
Rob
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Now he's allowed to say that :o) My niece just didn't quite get the connection..maybe she needs more boo boos?
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now THAT'S funny! :)
MRI to confirm the AN diagnosis: $1500.00
Surgeons bills for AN translab surgery: $20000.00
Hospital bill for AN translab surgery: $73,000.00
Having a co-worker ask (to my face!) "Did you die?": Priceless
There are some things in life that insurance will cover; for the rest of coping with AN, there are the stupid!  ;D
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6 weeks prior to the tumor discovery my husband had a work related accident in which large roofing  sheet metal slid off a truck, knocking him to the ground, literally covered his body in sheet  metal..  Move ahead to the tumor discovery and being treated on an emergency basis. I asked his boss at the time to meet me in the hospital cafeteria.  I don't know what I expected, maybe alittle compassion, but the first words out of his mouth was "Could the tumor of caused his accident?"
Guess this tumor was a pretty special tumor, we know how rare these tumors are, and 6 cm tumors are fairly rare, but how about a telekenisis Acoustic Neuroma that can make objects move, especially big objects 26 ft long, 700 pounds.  Now that's some tumor!!!!!
Best to all
Raydean
ÂÂ
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Wow incredible ....now why would you want to hurt the man who's going to help you through the ordeal. Think he was just hoping to get out of a workers comp claim? Geesh...that's up there with my son's grandparents telling him I caused his dad's brain cancer...DUH...I got special powers ya know...no where's my wand?
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I must have had at least 4 people ask me if I was awake for the surgery
YIKES!
Captain Deb
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I remember getting a call from the emerg. department that an out-patient was downstairs and only wanted to talk to me (I 'm a nurse, work in psych. in a hospital, this was at 1 or 2 am). As I walk up to the nurse in charge down there to aske where in the department this patient was she looks up, makes eye contact and goes completely white and says "I thought you were dead"....I'm not quick with come backs so I just responded "nope", and went about my business. I later found out that it was rumored that I did die! (yes sometimes hospitals are like they look in the tv shows!).
Kathleen
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My cousin has it in his mind (no pun intended) that I should have been "fixed" the day after radiation. Every time I talk to him he asks me "you're all better now though, right?"
TOM! IT IS NOT A ZIT! IT DOES NOT JUST GO AWAY AFTER A WEEK!
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I remember waking up in ICU to facial paralysis (not expecting it) and very groggy, asking my nurse what was wrong with my face, I then remember saying "I hope it doesn't last too long" and he replies, "well, it if doesn't come back in 3 days, you are cooked". I layed there so scared and helpless. When my surgeon came in the next morning, he saw how upset I was and I told him what was said to me. That nurse was taken off the floor immediately and he did not deny what he said. I was told later on, that he no longer worked at that hospital.
matti
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Hey I think I dated Kilroy's cousin lol
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My boss holding a meeting while I was at the doctors office for a check up and telling everone to humor me because I was probably going to die. When I came back to work the next day I had a crying co-worker and the biggest bunch of flowers your ever saw. Poor lady had cried all night because there was no cure for my cancer. Cancer?????? Who forgot to tell me?
Or maybe another co-worker who ask who would do my work when I was gone. Geez, I have a brain tumor what's her excuse?
Or maybe the first Dr. God who told me not to worry about surgery because not many people died from it. After all I had lead a full life hadn't I? He shold know because he had done 20 to 30 AN's in the last ten years and most of them turned out fine. What happened to the others?
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A guy who works with me says this to me after I was diagnosed: "So are they going to give you some ear drops or something?" My answer to him: "Actually yes, the drops are made of acid, it will just eat away my whole inner ear and eat the tumor." :D
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My favorite comment, after telling people that I've lost the hearing in my ear, is "But maybe it will come back." yea, right. ??? ::)
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Too funny Jeanlea I'm told the same thing which is usually followed by...well you can hear me now right? DUH no I'm lip reading while we talk on the phone ;D
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I had my neurosurgeion's Physician Assistant ask me, at my first office visit after surgery, if I'd noticed any of my hearing coming back. My wife and I stared at him, stunned.
"Uh, you do know I had translab surgery, right?"
"Well, sometimes it comes back."
To this day, I'm still not sure what that conversation was about!
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You know this thread bothers me.
People say dumb things all the time. Don't tell me none of you have ever said something dumb in the time of a crisis. Have a little compassion and remember, 99.9% of you had never heard of AN before being diagnosed. You friends, coworkers and family members were new to the idea, too!!!
DSKI
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DSKI, I agree but in times like this when we are the one's actually experiencing this and our family and friends and co-workers are also trying to understand, a little stress relief for everyone dealing with their own AN's is acceptable. Yep, I say stoopid stuff all the time. I've learned to laugh at myself for it. Heck, I'm famous for it. But... it certainly doesn't make me less compassionate. This forum is for all of us (and yes, it's certainly not just AN patients but family members as well) to learn, grow, share and yes, even try a little humor as stress relief. I'm sorry if this humor is not humor to you... and it may not be to many others either. But, in light of what we all are experiencing, it's just our light-hearted way to enjoy what is going on in our own little part of the world. I'm sorry it offends you. My suggestion...don't read this thread and please read those threads that are of interest to you.
Phyllis
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I have not posted on this thread before but I must admit that I do lurk and read it with a smile on my face. This AN stuff is really overwhelming at times and my family and I normally handle stressful things with "sick" humor. I have to admit that we have even named my tumor and whenever I forget something, says something stupid, drop something or about anything else, at least one person says "Don't worry Mom, its the tumor not you." and then everyone has a laugh. Sick, yes but it also relieves some of the stress.
Karla
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Karla,
I have to ask.. what did you name it? :)
Phyl
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Mine is named Phineas.
You know this thread bothers me.ÂÂ
People say dumb things all the time. Don't tell me none of you have ever said something dumb in the time of a crisis. Have a little compassion and remember, 99.9% of you had never heard of AN before being diagnosed. You friends, coworkers and family members were new to the idea, too!!!
DSKI
I don't think there are any posts here that are written with malice (with the possible exception of the ones directed towards doctors or bosses who more than likely deserve it). This is fun; we might be brain damaged, but at least we're not stoooopid.
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Mine is named Phineas.
I'm thinking of naming mine:
Billy-bob (said with Twue su'thern twang)
Thoughts?
(gawd, that really is sick...LOL!)
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Hi Everyone,
Since nobody seemed too offended at us naming my tumor I will share the name that we picked. We went with a very simple name. We call it Tommy the Tumor. My three year old grandson overheard us laughing about this and he went to daycare and told them that his Grandma had a baby growing in her head and its name was Tommy the Tumor. My daughter made me go in and explain this whole thing to the ladies at his daycare. Once they got over the shock of hearing I have a tumor, they could not stop laughing about naming it. They did say that it was pretty sick though.
Karla and TTT (Tommy The Tumor)
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Oh, I'm in. I named a big sebacious cyst that I used to have on the top of my head "Bob" (In fact someone actually asked me if "Bob" caused my AN!), and I've been trying to come up with a name!!!!! That is so funny!!!! I'm thinking Morty, since if I remember my high school French correctly, mort means death, so death to Morty the AN. Oh, maybe that's too much of a jinx. Would hate to get that screwed up.
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Hey Gennysmom,
Let's see now two growths...one head....I think that I would be very careful what I name anything after that. Maybe come up with the French word or words for "enough is enough already!" But then again I do like how your mind thinks...maybe great minds think alike or its the tumors...ha ha ha
Karla
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Besoin est besoin, maintenant!
Captain Deb
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That's true, for my next feat **** ta da ***** I'll probably get a big ole wart on my nose. You can call me Glenda now.
OK Capt, I can decypher but it makes no sense...must be a colloquialism....from what I remember you're saying "want/desire is want/desire, now!" Best be splainin' yourself. French was 23 years ago. I'm rusty.
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Well, poo I'm rusty,too!
Assez est Assez, deja?
Capt Deb
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Phyl Billy bob NO NO NO...reminds me of Billy Bob Thorton and he's just too darn creepy.
I think we should name it Matthew :o)
Dski...sorry if this thread offends you. Some of us need some comic relief at times to get through the downside of our AN's. Like Phyl said if it offends then don't read the thread and while you're at it you might not want to read the good morning thread either.
Karla, I like tommy the tumor...sounds like a childrens story book to me.
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Like Phyl said if it offends then don't read the thread and while you're at it you might not want to read the good morning thread either.
OMG batty, you are crazy. When I read that, I couldn't stop laughing for quite some time! Laughing is good ;D
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Well this thread is tame compared to that one and one other one. Somehow thinking dski wouldn't appreciate bob humor lol
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True, but like I said, laughing is good, that and chocolate have helped me through the most. You guys make me laugh and I enjoy reading as much of these boards as I can keep up with!
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We try :o)
Static my company is in Philly..that was my first trip to a big city by myself. I had the hotel clerks laughing at me because I didnt' know what a city block was :-[
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Batty, I grew up in Philly, but moved to the suburbs about 7 years ago. Should have done that sooner. Philly used to be a nice place, not so nice these days. FYI, some city blocks are much bigger than others, depends on the neighborhood. ;)
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ok, folks, when you toss my name around here, it's not Philly, it's Phyl.. no Y folks. Geeze! ;)
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Phyl, I grew up IN Philly??LOL Are you my mother?? LOL I am an orphan, do you want to adopt me? Actually I think the worse things people say are the "well at least............."
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along with "well at least" are the people who say "at least you picked a good type of tumor to have"....somehow I never considered using "tumor", "type" and "good" all in the same sentence, most of all when it comes to my brain.
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those sentences are usually said when you (the victim) are trying to comfort them. I usually cut them a little slack for that, heck, before this I probably was pretty crappy about what to say responses. It's the stuff that makes no sense that I use for humor...like the thinking a sebacious cyst on my head that went away might have popped up again as my AN. Hmmmm....a clogged oil gland and an overgrowth of the vestibular schwanna cells....yup, same kind of thing.
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ahhhhhhhhhhh!!!!!!!!!
*thinks of new thread*
ahhhhhhhhhhhhhhh!!!!!
*runs off to post!*
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Static if you buy me tastycake butterscotch krimpets I'll adopt you ;D
They gave that to use, philly cheesesteaks and pretzels to use at our work meeting in philly.
They all thought I was nuts as I walked 9 city blocks to the mall to get panty hose. I was so proud of myself since I made it to the mall (didn't recognize it and almost walked past it), didn't get mugged raped or pillaged...got to see the liberty bell because I walked, it was liberating to say the least..small town girl here ;D
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Batty,
I had thought that tastykake was distributing much farther than just philly and PA these days, guess I was wrong. Butterscotch krimpets are definitely not as good as they used to be. I remember getting them as a kid for .25 a pack, now they are way more and not even as good. Maybe we can bring some on our cruise! LOL Soft pretzels are my favorite so I'll bring some of them too. I know lots of good pretzel bakeries around Philly but the thing is, like you said, not getting shot on your way! My guess is that you went to the Gallery off of Market Street, the Liberty Bell and the hospital where I had my surgery are not far from there. I'd say it was quite an accomplishment for a small town girl to navigate her way through Center City Philly. Congrats!
Karen
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along with "well at least" are the people who say "at least you picked a good type of tumor to have"....somehow I never considered using "tumor", "type" and "good" all in the same sentence, most of all when it comes to my brain.
Ha! Right! My PCP (the one that found the AN) told me that if he had to pick a type of brain tumor to have, an AN would be in his top three. "Top three" and "brain tumor" were also not words that I ever considered using in the same sentence.
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Karen,
I'm sure they have them here too but....it was def. more of an experience getting them there :o) Hey I even made it around the govt building to another hotel to see my sister in law. She happen to fly in the same time to get an award from work. Taxis..we don't do taxis here lol
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Hey, Thanks for ganging up on me.
I guess only a certain few of you out there are allowed to have an opinion. I guess I was under the impression this site was for everyone. Thanks for pointing that out to me. :-X
Also, Kilroy, you may be brain damaged, but i am not!! I have all my faculties and am doing great!
I have read the good morning thread and after the first pageI did stop, I think that thread is a waste of my time to read.
I came to this site for help after a difficult situation in my life, guess I was wrong to think that maybe people who had been through the same or a similar situation as mine would be helpful. Again, my mistake!!!
DSki
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Phew... Ok... I'm sure we're all very glad that you're doing great and that you haven't lost your faculties. I'm also sure that if you have a question, or need some support, everyone on this board would be happy to stop their rambling and horsing around to answer or help you.
If you'd care to share your situation, every last one of us will do what we can to give you what you need. Have you considered starting your own thread? I did that when I was diagnosed, and I found people responding within an hour.
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There are plenty of threads out there with some serious information in them and lots of help here if you just ask for it. Seems you just picked a thread which we were horsing around with. Keep reading, ask a question or two, this is a large posting site!
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Dski
No one is ganging up on you and I'm sorry you are taking this as you are. Rightfully so. I well understand your feelings and please know that there are MANY useful threads here on this site for information to assist with any AN questions you may have. As noted on the home page here, "General Discussion" is for anything and everything. If you look throughout the rest of the site, you will see that the other forums are serious in nature and provide very valuable information.
Know that we do welcome you as a part of the AN family. Since this is such a rare tumor, we all must stick together and support each other in ways that work for us. If this thread doesn't work for you, that's ok. But, we do welcome you, we do not gang up on you (like you say, everyone is entitled to their own opinions, just as much as you are) but know that we band together in unison to help us deal with what life has cruely dealt our way.
We are here for you... much more than you know.
Be well.
Phyllis
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Ok darn after typing a nice reply to dski I lost it before I hit the button....
Trying to play nicely today...I'm in time out today ;D
Dski if you are new to this site then you are you newly diagnosed and trying to find some direction? We are always more than willing to share our experiences, celebrate the good and counsol with the not so good. Many of us our post operative patients who are experiencing many complications and this is our way of being able to find some humor or comfort in an otherwise horrible situation. We dont' know your story as you have not shared but please don't judge us until you know our stories. There have been many threads trying to welcome new people (I even started it), many threads from new people welcoming them to the board. If you do not share we don't know 1) why you are here or 2) what you need in the way of help, advice, listening, venting, etc...
So with all that being said I aplogize if you felt ganged up on but honestly I felt like you were condeming and criticizing us for trying to find some comic relief (laughter is suppose to be good medicine) and sharing out heartbreaks, uncomfortable moments and unkindnesses we felt during this most difficult time.
Please know we are truly here for you during this time.
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Everybody has to deal in their own way, I have the comedy channel on right now, beats CNN or fox news, they are so depressing. Hoping to catch Lisa Lampanelli if she's on tonight, if not I'm going out to buy her DVD, she really cracks me up! I heard she was on Leno one night this week but being the old fart that I am, I need my sleep and was out in la la land. Weekends are my late nights, the kids don't have to get up as early this week and on Sunday mornings, it's pjs until at least 12 noon!
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Static is she a heavy set red head? Was she on with Simone from Idol? If so she was a hoot. 8)
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i think these threads are great andthey do say laughter is the best medicine! when i was told about my an, the consltant described it as a baked bean, so i named it bean. my brother thinks if i get it out i should have it on toast! having said that i saw the post with the picture of an an and thought yuck! being a rather pink chick myself i think bean is pink too, not grey and horrible looking! think if i got it out id be allowed to keep it interest a jam jar as a pet? lol leigh x
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My nickname from when I was a kid was "Bean"...from Kathleen. Unfortunately I think of mine more as a large in the shell almond. If I get it out I could feed it to my macaw as that's her favorite treat.
OK, here's my two cents, and they might not be as nice. DSki, you felt the need to chime in and rain on our parade, then you get upset when we "gang up on you"? There are those of us that need this thread for our own sanity, and obviously those of us that don't. I would not venture to take away from your diagnosis, needs, anger, whatever, but to actually take the time to say that our thread is a waste of your time...is disturbing to me. I wonder why you feel the need to make a personal attack. My suggestion is to take a step back, take a breath, and start all over again with a new thread where we can respond to what your needs are. This thread IS for everyone, and if it's a waste of their time, they can stop reading and just move on like I'm sure others have. Some threads are that way for me...they don't hold information I feel I need.
Thank you Becknell for your enlightenment, I am new and never knew the site before and I am so happy, for my own sanity, that it's not just serious and scaring the crap out of me. Thank you guys, you are the best, I love you all.
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I don't know if anyone was familiar with the old format of the AN listserve, but if you were a subscriber, you got every post that was posted as an email in your in box. There was a lot of bickering and criticism--so much that I gave up on it! This format enables us to take what we like and leave the rest.
As an AN survivor who has spent the better part of the past 3 years in bed with a HEADACHE
I really need to horse around, but I also feel that my experience can benefit others.
Live and Let Live!
Capt Deb
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A source of great AN info... a dash of entertainment... a WHOLE lotta giggles... gawd, and a few stoopid things thrown in for good measure. Gawd, I luff this site! :)
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Hey Gennysmom please go back and read my initial post in this thread.
I am not trying to rain on your parade. I am just saying after everything we have all been through maybe we need to be more sensitive to others who do not totally understand what is going on in our lives, and yes people do say stupid things. But we all have at some point out lives and we are no better than them just because we had or have brain tumors.
I came to this sight to get some insight that my symptoms are not individual to me, that others are feeling the same as I am. I made no personal attack, as you said in your post, don't read it if you don't like it, which I do.
I just find that while alot of information on this sight is helpful, I am not looking for friends with AN. I am just here to see if my symtoms are typical.
Sorry you feel attacked, but before you get on my case, take the time to read my post first. I am sure i have angered some more of you out there and thats too bad. But I think you are dwelling too much on you situation and oh poor me, rather than, I can beat this thing and it will not rule my life or my thinking.
I am done with this sight and wish you all well in your choices and recoveries.
DSKI
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Batty, Yes, it was her on Leno with Simon. Apparently she has a DVD out called "take it like a man". Haven't found it yet and didn't do a net search, haven't had time.
Capt Deb, I used be to on that old list too. Couldn't take all the BS so I left as well. This forum is much better.
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stoopid is as stoopid does.. and all, I do stoopid all the time! :D
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"But I think you are dwelling too much on you situation and oh poor me, rather than, I can beat this thing and it will not rule my life or my thinking."
Obviously she's preop not the reality of post op and since she never did share her story who really knows but I detect a little bitterness there. None of us are NOT trying to beat this thing or let it rule our lives. We are all trying to come to terms with what fate has dealt us. Speaking for my ownself, life as I knew it no longer exists and I'm trying to find my path since I can not do my current job, I'm a widow and I have a child I'm trying to raise and not in a cardboard box on the street. My AN experience doesn't RULE my life it did CHANGE my life due to my surgical outcomes. It does however beat the alternative which was Death since my brain stem was involved I coun't myself fortunate.
I just find that while alot of information on this sight is helpful, I am not looking for friends with. I am just here to see if my symtoms are typical
I don't think any of us were "looking for friends with AN" we just happened upon each other and are enjoying our friends with AN as they can relate the best to our not so good days and everyday frustrations with the outcome of this tumor.
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I just read this thread and I think you all need to calm down, and respect others and their thoughts and feelings.
Sometimes it does get silly on this site. Which is not my style, but i just breeze past those threads. Lets all try to remember why the site is here, to help everyone, no matter what stage they are in and if they don't want to share their "story", then thats okay too. :'(
Denise
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Stick a fork in my I'm done.
Gennysmom please email and tell me how you are. Been thinking about you all day.
M
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DSki - Sorry you feel this way!
I don't think anyone on here feels that they are better than anyone else just because of having an AN.
I don't dwell on what I have been through, I rejoice in how far I have come. And I have come this far because of the wonderful, supportive, informative and humorous members of this forum. When I had my surgery 8 years ago, there was nothing on the internet in the way of support and the info I came across was nothing but horror stories.
You have the choice to read or not to read a thread, just like TV, if I don't like the show, I change the channel and find something else that interests me. There are alot of threads on here.
matti
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OK, he/she is "done with this sight (sic)" so we shall be done as well. Let this thread go back to be what it was, a way for us to relieve a little stress. Or let's give this one it's proper burial and start the sequel, and get the bad juju out.
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Each of us comes to this board at a different stage of our AN journey, we're all so different, but all of us have the AN in common. We come to this board with different needs, different hurts, different experiences and outcomes. .  For some, it may take time to share and to post. Others, jump in with both feet.  I hope DSki stays, I know that we can learn from her experience, and she may gain from our experiences.  At the table of AN there has always been room for all. ÂÂ
Often times I am described as strong, knowledgable in AN issues, confident.  But that wasn't always the case.  I came to this board feeling very much alone, overwhelmed with medical issues and responsibilies, hurting and unsure of where we've been,(much less how we got there) and not a clue to which direction we were headed. But the members took the time to listen, to ask questions, they shared and helped me research.  I found our way in part due to members of this board. My life is balanced now with the AN being a part of our lifes
All on this list are so  much more then their AN  and outcome.  The AN
is a part of our lifes, but not our whole life."
Blessings to all
Raydean
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I know we are done on this site but to DSKi,
I am one of the posters that enjoys a laugh and posts accordingly but it's important for you to know a little of my story and others will have similar but different issues - hope you are still reading this.
I was diagnosed with an AN 3.5 years ago. i was told - got to get it removed quickly coz it will grow and will require more invasive surgery. i was rushed (within days really) into surgery and wham, bam thank you man, i was under the knife. I didn't know of this site or do the research or look at options - idiot - maybe, but I trusted the ENT surgeon. i would never had surgery had i been as informed as i am now.
Well, 3.5 years later, debilitating headaches, from day one of the surgery and the %^^&^% has grown back.
This site has provided me with fantastic amounts of research material, experiences advice and, this is the bit that you don't understand, a theraputic recovery process - that is, some of the humour posts. You'll actually find that a number of the posters that post humour are in a lot worse physical condition than you might think and do consider this to be fantastic therapy.
You may not believe this but when i am writing something silly or reading other silly posts, i forget about my troubles and laugh myself stupid. No drugs, shrink or surgeon has been able to emulate that.
If you are not interested in the humour / therapy, thats fine, there are probably 5,000 odd posts here that will give you facts and experiences. Read those. We are here to help you and even amongst the humour, we all look at other posts and answer them accordingly.
To me, this site and the posters have been a life saver coz these headaches of mine have nearly pushed me to a level that i don't want to think about. This site rules as do the posters.
Larry
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OK, while I do read some, I seldom post. I do have what they are calling possible bilateral AN's, but whatever they are, they're so small (about 2mm each) they're not sure they are AN's. That's what the Dr's call them when we talk, but so far no definite diagnosis. I do have a few other NF type tumors in my head though. As far as being silly, I blame every screw up I do on them. as in "I would have got that right, but I got these darn tumors in my head." The guys I work with have picked up on it too. "Don't blame him, it's those darn tumors." AN's or not, I just can't stay serious about much of anything in life for any length of time. I love humor, especially when it's at my own expense, and I work hard at leaving myself open to to be picked on in a fun way at the NF (neurofibromatosis) boards. Do I know what AN's can cause? Yep. I already have shaky balance, tinnitus on both sides, some dizziness, so far, mild hearing loss, and had a cataract removed while I was in my 40's. Like I said, I don't post 'cause I don't have a positive Dx, and I don't figure I really belong without it. I just wanted to say keep up with the humor and silliness. ;D
Mark
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Mark - as far as I'm concerned, post away. One, if you can further our humor therapy and help make us "forget", that's a good thing. Two, I feel, the whole journey of AN starts with finding out you have something "foreign" growing in your head, and as far as I'm concerned that pretty much hits high on the "holy crap" scale, no matter what size it is. Whether it be AN, or end up being a meningioma, or whatever, it's still something in common with us and our friends/families.
Larry - you are a dear, dear, man. Those hormonal women in your life are pretty lucky ;)
One last thing, you know, I don't think I have yet, in the last 3 weeks I've known about the bugger, even had the thought "oh poor me". Those of you that know me so far would probably say that's not my style. What's funny is that I've gained so much knowledge here that today I blew the Dr. out of the water and made his job a hell of a lot easier today when I was 10 steps ahead of where he thought I would be. My response to my assesment and his opinion of Translab? "Get er done, as long as I can go on vacation". Cool. Not looking forward to the mess, but I'm nowhere near a pity party. It's life, you deal with what you get and you're stronger for it. Bring it on. If it weren't for you guys boosting my strength, I'd probably be a puddle now. Thanks bunches!!
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Good Morning Everyone,
I was back at school yesterday and did not have time to post but did do some lurking around. This silly thread has been so much fun for me to watch and to manage to post in once in awhile. I have to agree with gennysmom I am not on a pity party, rather I feel that life has set me forth on an unexpected path I need to travel. On this path I will meet people who enrich my life and as with all difficult times I will come out stronger and better on the other side.
I too am a widow raising three children and going to college full time so who has time for a pity party or to be bitter. I am determined to educate myself as fully as possible about surgery options and what to prepare for on the other side so that I can move on with life. I feel that I need to be as physically and mentally healthy as possible prior to the surgery and this site has proven to be a power tool in that endeavor.
Okay I will quit rambling and simply say thanks for being there.
Karla
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Karla,
So you're pre-op too? I lose track when people don't have the info in their signatures (must be the AN ;) ) I'm on a quest to get as physically and mentally healthy before surgery as well. I want to do what I can do (if anything really) to make my recovery easier. One of those things is to laugh like hell and have as much fun as possible. Stop and smell the roses. Maybe we can do the Monday morning mental health weigh in!!! What size and side is yours on, if I may ask?
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Genny glad things went ok on your appt and you still get to take your trip this summer!
Karla I agree with you! what doestn' kill us makes us stronger that's for darn sure. No time for a pity party either..had one back in november. My son is now sick so needing all my strength to deal with that. If it's not one thing it's another lately!
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Good Afternoon,
Been to class, birthday shopping for son and now am taking daughter to appointment....no time for pity here. lol
I am post-op and my tumor is on my left side. I am not sure what the size is because the radiologist called it "moderately large" and the neurosurgeon said it was not as big as we first thought. I have been trying to figure out how to get the single measurement that so many people on here use but so far no good. I do know that in the bony area it is 4x6x8mm and in the brain area it measures 1.4x1.1x1.1cm. I am not sure about the monday morning weigh in thing...if I had to write my weight down every Monday I might get really depresses.
Hey Batty, I know that we are both running like mad women and have been made stronger by life's trials. Hope that everything is okay with your son. I know how hard it is to have a child sick and the amount of energy that it takes. Be sure to take care of yourself.
I will try to check back in after daughter's appointment and son's birthday party.
Karla
ps. any typos are because of the tumor not my horrible typing skills! ha ha
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Thanks Karla,
The whole thing is frustating with him as no one wants to treat him due to his age. Will start looking into major medical facilities if I have to. >:(
You dont' have to write down your weight every monday...it's merely a support cyber buddy diet system to keep us motivated to try and shed some pounds. Decadron has a way of really putting it on you...I'm sure some other meds fall into suit and they I've got a brain tumor diet doesnt' help either!
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Actually, I meant a "mental health" weigh in....as in, having a good day, or not so much! :D
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See today is a bad mental health day for me :(
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If it is a mental weigh in then I am certainly in for that. I am a stress eater, happy eater, sad eater, hungry eater, bored eater....you get the idea. Needless to say I don't munch on veggies and chocolate really is appealing.
Batty, if it is not intruding may I ask what is going on with your son? I would also encourage you to stick with your gut feelings on what is best for him. I am just a full believer in following your gut on these things. In fact they had wanted me to wait a couple of months before I saw the ENT and then to consider an MRI. My gut told me that waiting was not a good idea so I pushed for the MRI before the ENT. It certainly turns out that I was right.
Let me know if there is anything that I can do to help with your son and know that you are in my thoughts and prayers.
Karla
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Thanks Karla...my gut isn't talking yet. I'm having a hard time finding a doctor who will treat my son due to his age and his condition. It's very frustrating!
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Batty,
I am sorry that you are facing this struggle with your son and his health. It is very scary and upseting. It makes a person feel so helpless when they know something is wrong and yet cannot get help. That is what happened to my husband. I knew something was wrong and yet the doctors were not willing to listen, until after he died. Then it was then they all said "You were right".
You and your son will be in my thoughts and I will be sending nothing but positive vibes your directions.
Karla
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I'm sorry that is was a not good day Batty. I've noticed you've been a bit withdrawn. What can we do? How can we help? You know I'll be here for ya for anything you need!!! Just say it, and if it's within my powers it shall be done.
I think mental health check ins are good because some days where on here can you jump in with "hey guys, having a cruddy day here", especially in all the humor. I should start a thread, but I'm so dang tired and looking at about 4 hours of sleep before the alarm goes off....so something for tomorrow. Hang in there!!!
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Thanks Karla and Mom...I'm keeping my fingers crossed the next door will be our blessing. April 6th was the soonest they could see us. It breaks my heart not to be able to help him or fix him and take the pain away. :'( The first doctor told him it was all in his head...DUH...it wasn't and isn't and now we have the proof and the diagnosis to back it up. What really gets me is my son asked the first doctor if he could have what he has and the doctor told him nope. Not only does he have it it has it bilaterally..how did the first doctor miss it? Very frustrating not to go B*&^% slap the first doctor!
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Good Morning Batty, Gennysmom and everyone,
Batty, hope that today goes better for you and your son.
Today I am facing a statistics class and a dirty house to deal with. Oh yeah then I need to pay some bills. So much for the good mood this morning.
Everyone have a great day!
Karla
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Karla - I hate statistics. I am going back to school and that is one of the classes that I am fearing. My oldest son who is 23 siad he would help me, role reversal, that ought to be interesting :-\ÂÂ
I might have to call you for help!
I have said it before in another thread, I think you and Batty are amazing and inspiring women, you have both been and are going through so much.
have a good one
matti
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I second that Matti!!! There's lots of inspiring people here, but Karla and Batty are right there on my top list! I hope that even tho there's statistic's and waiting and bills in your day, that there are good things as well. My good news of the day is that on my European trip, we were being joined by 3 of 4 Spanish exchange students that we had when I was younger, and their spouses...but the fourth wasn't planning on coming. He's a cardiac surgeon, his wife is a pediatritian and they have 2 young girls, and it's just really hard to travel. Got a note from him today and he wants to talk to his on staff neurosurgeon about me (he loves his job, a medical geek) and because of this, he's going to come anyway. I'm very happy I'll get to see him!!! So the whole "family" will be there for a reunion! Good day!
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Gennys mom I can come and babysit for them!
I got an "A" in statistic...hard class but had fun with it. It also didn't hurt to have a college professor who loved the dog track. I ran stats for him and he won 10K. Think maybe that got me the A? Of course he was fired for trading sex for a's...with the boys lol
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G-Mom, that is fabulous!!!!!!!!!!  Let me know how it works out! :)
...and you are right about the inspiring folks here... I second that! :)
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BP, you'd have fun babysitting, they live in Barcelona, Spain!
Did you get a cut of the 10K?
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My son would absolutey dig that...his 3 years of spanish could be put to use!
10K? what 10K?
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$10,000? If that is the case and you are getting a cut of it... you can treat us to the ice cream that my very dear, lovely, SO, cheeky bloke Iain told you about.. the little snitch! ;)
10K? what 10K?ÂÂ
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Good Afternoon Everyone!
Well I survived statistics once again!!! The dirty house and bills can wait while I have a cup of coffee. I am like Batty in the fact the stats is kind of fun. I have an A in the class but there are times that I come home and wonder what the professor just talked about. Matti, you are more than welcome to contact me for help when you hit stats....it is really funny to have your children help you through classes at school. My 17 year old does that quite abit and never lets me forget. I don't know how old you are but I attend school in the early 70s in Alaska so many of the things that I am learning in college are new to me. Most of my classes have been thought provoking and I love going to school. I would tell anyone looking at going back to college to relax and enjoy the experience. Us non-traditional students bring a very interesting element to the class room.
Thank you all for the kind words about admiring Batty and myself. It has been a real boost to my daily struggles knowing that Batty is out there and that she has made it this far and so can I. As I tell my children life is 10% of what life gives you and 90% of what you do with it.
The coffee is done and the dirty house awaits so I will bid you all so long and will check back later.
Karla
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Hi Karla - I am heading back to school at the age of 49. Didn't quite finish in the 1970"s and now that my kids are grown, I owe it myself. Thanks for offer on Stats, I just might be calling.
I acutally have that motto posted in my office and on my fridge " Life is 10% what happens to you and 90% your reaction to it". My Weight Watcher leader uses it alot as well.
My husband travels to ALaska for business quite often. He has to visit Anchorage, Kodiak and Dutch Harbor. I may go with him sometime this year, hopefully summer, I could not take the winter months. I need sunshine.
take care
matti
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I think its great when people try to better themselves especially after years of different activity. My wife was a shorthand typist (on a typewriter, pre kids, 17 years later decided to go back to work but missed the computer boat, where you ya Capt Deb? anyway, she went to course after course, did voluntary work to start with and then got herself a good job. Whilst not the Bill gates of this world, she can handle herself around the P.C and thats been great for her.
My hat is off to you guys.
Laz
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Oh I know what 10K you're talking about now and NO I didn't get a penny of it. I did get a lot of extra credit for the class and passed with an A...and at the time it was more important than the 10K lol I was in school with my husband terminal with cancer and my son sick from one really ever figured it out he just sorta outgrew it.
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That's the 10K....sorry, I was out last night with something I ate that didn't agree with me. Slept the evening away with my friend the heating pad, and slept through Lost. Luckily, I have a TIVO!
I'm still a little slow today....catch up with everyone later.
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I hope you saw shirtless Sawyer last night, Mom! OOOOHHH-OOOHHH-OOOHHH! Where's my phone booth?! AI Caramba!
Capt Deb 8)
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He's safely stored away in my TIVO! :-*
He looks very nice shirtless!!!!
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Okay, last night I went to a play that my 12 year old is in. I started the night feeling pretty darn good but by the time it was over I felt it was time to plan my funeral. Several people came up to me and asked how I was doing. This is a very common thing in this community. I told people that I was doing "well", because frankly I feel I am doing well. All but three of the people said, "No you're not. You can be honest with me. I know you have a brain tumor." I would then attempt to explain that while yes I do have a tumor the long-term outlook is really quite good. All of them treated me like I was dying. It made me feel horrible. I know that their hearts were in the right place because they are all super people. All in all it was a great lesson for me in empathy. I will be much more aware of what I say and how I say it to people who are facing a tough time.
Enough venting for me,
Karla
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There is no question that the term "brain tumor" evokes a lot of emotion and fear in folks. I know many folks think it's just semantics but the reality is that none of us has a brain tumor. We don't, at no time will an AN ever invade or metasize into the brain. As it gets bigger it will certainly push on the brain, but it simply is not a brain tumor.
I tell people I had a skull based lesion on the 8th cranial nerve. It may sound silly but when you eliminate the words "brain" and "tumor" you get a whole other reaction. In some cases, it is a glazed over look of some
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If the Skull based lesion answer doesn't work for some , try I had a wart on the nerve going to my ear removed ;D
Mark
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Hey Mark,
I love the wart idea better than the lesion one.....but I must admit your answer throughly confused me because both of my doctors called it a brain tumor and the majority of the sites where I did research called it a brain tumor. Even the Havard Medical website listed it as a brain tumor. It really does not matter though, the whole thing just adds to my sense of confusion.
But maybe I will start using the wart thing because that one cracks me up. That being said I do realize where the people were coming from and in spite of feeling somewhat like planning my funeral, I was also touched by the love and support that was offered. The whole thing did make me more aware of thinking before I speak to people facing difficult times.
Karla
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Hi Karla,
I agree with you that I see AN's classified as brain tumors on a lot of very reputable medical center web sites or in discussions with very widely respected clinicians. My own theory is that it is the simplest way to categorize for people doing web searches or in talking to patients so they can understand the general location. I had this discussion with Dr. Chang and technically it is simply a skull based tumor or a vestibular schwanoma. It occurs in the skull, but it never does become involved with or connected to the brain. I'd be willing to bet money that if your countered any neurosurgeon who called it a brain tumor with those terms, they wouldn't disagree.
Mark
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Mark,
Frankly I like the idea of it not really being a brain tumor and that it just happens to occur within the skull. It also makes sense because my reading has also indicated that the tumor actually starts in the ear and simply grows into the skull. I have told people all along that if I was going to have a tumor that was by my brain that this was the type to get. I can also see why doctors attempt to explain the tumors in the simpliest way possible. I think that most people (myself included) are freaked out when they are told that they may have to have their skull opened up to remove a tumor. I will try explaining it the way that you did when talking to people as I think that it will help reduce confusion and unneccessary worry in friends and familyl.
Thank again,
Karla
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I haven't run for the Webster's yet, but I suppose it depends on if you're considering "brain" as strictly being the cerebral cortex. It's what most people think of when they think brains, the grey matter. But I also think that the bits attached to it are all part of it, including the nerves, hypothalimus, pituitary gland, etc. All that together is the "brain".
What I've been tellng people to ease them into it is that I have an overgrowth of cells on the nerve that is in charge of hearing/balance. Depending on who the person is, I may go into it more than that. Or they may ask me. At first, I was trying to be real careful because it bothered me to say something that obviously made them uncomfortable, but at some point realized that I didn't want to feel any more uncomfortable than I already do. I find if I distract most people with technical details, and make it sound like an interesting thing to study, most people walk down that "fascinating" path with me, and are put at ease. This just comes with the level of comfort I feel in my research about what I have. Amazing what one can learn in a few short weeks.
Having the ANA booklets around for anyone that is really that interested in me has been helpful as well.
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I refer to my tumor (when someone asks me about it), as a non-cancerous tumor on my left hearing nerve...that seems to be plain enough for them...
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Mark: In fact A.N. can become involved with the brain. Although it doesn't innervate the brain it can displace the lobes and cause temporary damage. I believe also the cranial nerves are considered "part of" the brain but I could be wrong about that.
Kathleen
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Kathleen,
I agree that the AN can affect the brain through displacement of the cerebellum and other elements if it gets to sufficient size, but that would still not "organically" make it a brain tumor per say. The second part of your post is a very interesting perspective which I hadn't considered before. Are the cranial nerves considered a part of the brain by extension? It's a fair question and I really don't know the answer. Everything is interconnected at some level, so then would the spine and nervous system also be considered part of the brain? If the cranial nerves are truly considered part of the physical brain, than an AN would clearly be a tumor of part of the brain and I would concede my previous point. It is a bit of a stretch for me, but I couldn't dispute the point you make. I shall ponder it with a glass ( or two) of wine tonight, which BTW will affect my cerebellum ;D
mark
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OK, now I had to go to Webster's just to satiate the curious. Not sure if it really answers the question, but does say enclosed in the skull, as the AN is. Continue on with your drinking, I will join you soon!
Main Entry: 1brain
Pronunciation: 'brAn
Function: noun
Etymology: Middle English, from Old English brægen; akin to Middle Low German bregen brain, and perhaps to Greek brechmos front part of the head
1 a : the portion of the vertebrate central nervous system that constitutes the organ of thought and neural coordination, includes all the higher nervous centers receiving stimuli from the sense organs and interpreting and correlating them to formulate the motor impulses, is made up of neurons and supporting and nutritive structures, is enclosed within the skull, and is continuous with the spinal cord through the foramen magnum b : a nervous center in invertebrates comparable in position and function to the vertebrate brain
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oh my did somebody mention a couple of glasses of wine!!??? If there is wine involved then I certainly think that we should all sit down with a glass of fine wine and discuss if our tumors are brain tumors or not. Perhaps if we are not able to come to a consenus with one glass, we may have to have two glasses. Speaking for myself strictly, I am a cheap drunk so if we discuss it long enough it won't matter to me if it is a brain tumor or a toe tumor..lol
I personally think that I will stick with the wart idea when talking to other though
You guys are the greatest medicine!
Karla
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I"m so confused with this conversation I'm going to have a whole case of wine to ponder it all lol ::)
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Jeez, me too, Batty! I'm havin' some dark chocolate. I had a salad for lunch, to I can now have a third of a chocolate bar as a reward---OH
Back to the thread--I old someone once that to get the tumor out the docs had to severe my balance nerve on the left side and her response was--"Well, can you sue them for that?"
Captain Deb
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Now that sounds like a great combination, wine and chocolate.....who knows if ponder just what exactly these tumors are and come to a consensus maybe we will have to celebrate with something really crazy like a mixed drink...
Karla
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I heard they have someting now called a chocolate martini! Too bad I quit drinking!
Capt Deb
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Well Captain, being the good deck hand that I am, I will try the it for you and let you know how it was lol
Karla
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OH YEAH! Such a good little crew-wench ye be! Such Sacrifice!
CD 8)
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My three cousins flew in from California to see me after my surgery. They were staying at a local hotel. I drove over to meet them in the hotel lobby. When I saw them, I greeted them by name and gave them all big hugs. My oldest cousin ( in his 60's), said "the surgery must have been a sucess, she can still remember who we are!" Some people just don't get it! Ann
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They didn't severe my vestibular..they sacrificed it...can anyone tell me what the difference is? Did the perform a ritual over it first? lol ;D
I was just telling phyl at a meeting with my boss a few weeks ago she was telling how she had gone to the dentist and have a novacaine shot and started crying thinking of what I'm going through (the left side of my face, mouth, throat, tongue is numb) :-\. The next sentence out of her mouth was...."if you're not back to work at 100% in august we're going to have to let you go". So much for sympathy eh?
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Batty,
I am thinking that they most likely perform some sort of secret surgical ritual prior to sacrificing any body part. I think these rituals are directly linked to the cost of each surgery, the better the ritual the higher the price. It seems to me everytime I hear that something has been sacrificed, the bill is higher than if nothing had to be offered to the surgical "gods".
I know that I am just glad that they don't need a virgin anymore to do sacrifies. Maybe if they need unthinking people you could offer your boss as a sacrifice for one of us. lol
Karla
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Works for me just would have to sacrifice her before 5 and the pickle juice sets in (her motto it's 5:00 somewhere) lol
You know for 100K and a sacrifice you'd think they would have invited me to the sacrifical party to enjoy it not sleep through it!
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it must be one hell of a party for that price and a limited guest list!!
Karla
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Yeah and I missed it...Dang! Wouldn't even know about the "sacrifice" except I got a copy of my surgical report. It was a very hush hush ya know lol
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I was just telling phyl at a meeting with my boss a few weeks ago she was telling how she had gone to the dentist and have a novacaine shot and started crying thinking of what I'm going through (the left side of my face, mouth, throat, tongue is numb) :-\. The next sentence out of her mouth was...."if you're not back to work at 100% in august we're going to have to let you go". So much for sympathy eh?
Your boss needs to be shot!
Oh, my dr's note showed up today... I was then told by my mgt that it was for "liability" reasons. So, if anything happens to me while at the office, the company insurance won't have to say "did you know about her illness? Did you accommodate her?" Go figure, eh?
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I wonder if there's an AN pergatory out there. Just where do all of our AN's go when they die? Let me know if you know, because I'll be making sure mine beats feet out of here to wherever it needs to go.
Oh, Desilu, you have just given me such an evil plan.....
Karla, what a crack up....the travelling tumor. "It was in my head when I started drinking, then where did it go?" Should have been there tonight, we could of made it a 5 way with Phyl, I'm sure she could rustle up another cell phone. We know she has them by the dozens now.
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Aren't bosses great? Mine at least paid lip service to sympathy... "If you need any help with your workload or if there's anything the company can do, we'll work with you." Yeah, apparently "working with me" meant "giving me extra work to do." But the thought was there. ;)
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Oh, my dr's note showed up today... I was then told by my mgt that it was for "liability" reasons. So, if anything happens to me while at the office, the company insurance won't have to say "did you know about her illness? Did you accommodate her?" Go figure, eh?
"Did you know about her illness? Did you know she was totally nuts? Did you know she was a chocoholic and likes cheeky blokes? Did you know she thinks her dog is a person? Did you know she does naughty things with her telephones?"
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The answer to all those questions/statements is YES Capt Deb, we know all about you .. but those telephones - I hope you you are talking about the ring tones and not the vibrator?
Laz
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Nah, Laz, Batty's got that. Phyl is guilty of the rest. I, of course, am a complete angel. Can you see the halo shining? :o
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Yeah , Mom its's friggin' blindin' me thru the computer!
Capt Deb
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I am not guilty.... I am an angel... my CB will tell you... :D
Won't you CB? WON'T YOU????? :D :-*
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I'm a good girl I swear! I'm a girl and I'm d%^$ good lol ;D Can provide references but of course they were all pre surgery lol
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*spits mouthful of diet coke at computer monitor while laughing*
hehehehe! yeah... right! ;)
I'm a good girl I swear! I'm a girl and I'm d%^$ good lol ;D Can provide references but of course they were all pre surgery lol
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Do you realize you're either spitting something on your puter or hitting your head on it... Be careful or your're gonna break it and then what will we do when we can't hear from you?? ;D