new here...so frustrated i want to scream!!!

[Nancy Drew]

Hi Carrie,

I have days when I feel like everything is fine.  Then I feel guilty for complaining because after all the tumor is benign, and it's not gonna kill me.  Then I feel guilty because there is so much worse happening out there in our world.  Then I realize that I have a right to feel upset, angry, and want to "scream".  Seems like the feelings go in and out--never predictable.  So, I'll pace and have anxiety attacks, and then 20 minutes later I'll go outside and realize what a beautiful day we are having.  And, then a cloud will cover the sun, and I'll get angry because I have to go inside and change to long sleeves.  Then I'll go back outside, and the sun has come from behind the cloud.  And, then if I spill something all over the floor, no problem--just clean it up.  These ANs can cause some "nutty" stuff.  For most I figure, but maybe for some . . .  not so much.  Count me in on the "nutty" stuff.  In my opinion, "nutty" stuff is just a normal reaction to something we didn't ask for--this AN.

As for the ABR test, Steve, I don't have the technical terms right in front of me, but the only problem I had was tracking the dots.  Doctors said this wasn't related to the AN--medications most likely.  My husband said it was probably a "control" thing since I am such a "control freak".  I read somewhere on a website that it could be medication or lack of cooperation on the patient's part.  Do you know anything about this?  I had the same problem on both of the ABR tests I have had.

Hang in there Carrie,

Nancy

[scarriegirl]

well...this is getting easier with every passing day..but i really resent peoples need to project their fear onto me.  i got a card today telling me to be strong and to keep my head up and soon enough i will be enjoying my time in my pjs catching up on reading.  i AM strong!  i AM keeping my head up...and really....enjoying recovery from a brain tumor
?
if they are afraid keep it to themselves!! i have ENOUGH to deal with.  i don't need others fears projected on me!  f that.  i only have enough energy to be strong for me...and not even that some of the time! 
if these people were not family members i would just cut them loose...but what can ya do?  day by day  i guess
xx
carrie

[ppearl214]

carrie,

the initial anxiety does ease in time.... and the love and support of everyone here certainly helps that cause.  Honestly, I'm tickled you received a "thinking of you" card... it helps to remind us (and you) just how loved you are... and in times like this, just how much your 'inner circle" is there to help support you. It's those folks that tolerate the thick and thin of situations like this... and honestly, you are truly blessed to have them in your life.

Suggestion... .please consider the brunch in Worcester:

http://anausa.org/forum/index.php?topic=7255.new#new

If anything is to help bring you peace of mind about this journey, come meet some of the folks that have already walked in your shoes.  Come see how everyone is doing... how everyone looks.... gain a few pounds over the food.... but most of all... meet folks face to face to really "see" what this journey is about.  Please conisder it.

Hang tough!
Phyl

[Kaybo]

Carrie~
I agree with Phyl about the card.  Aren't you glad that you have people in your life that care enough to take time and get a card and send it?  Trust me, some day, those cards will mean even more to you.  I still have (in a trunk) all the cards I received when I had surgery.  Sometimes people don't know what to say, or don't want to call & bother you, but just want you to know that they are thinking of you.  What a great support system!!

K

[lori67]

Carrie,

I know it gets frustrating, but don't feel like you have to help other people deal with their fears about your surgery.  I don't think they expect you to.  I think they just want you to know that they are concerned for you (and you would be for them if the tables were turned, I'm sure).  I don't think they are expecting you to comfort them.  Sometimes it's hard to know what to say or do in these situations that don't come up every day.  And we all know people who say or do something really stupid when something like this comes up.  Just remember they are trying and they truly mean well.

If I were you, I'd just thank them for the thoughts and not worry too much about it.  It'll be nice to know that you've got so many people pulling for you and praying for your recovery on those bad days. 

And if you play your cards right, you CAN enjoy your recovery from brain surgery - take them up on their offers for meals, cleaning your house, doing your grocery shopping!  Sounds like a win-win situation!  How often does that happen??   

I hope you are able to make it to the brunch!  I hear the apple dumplings are awesome!  You can have one for me!

Lori

[kenneth_k]

Hi Carrie.
I totally agree on what has been said. Especially with Debbie on the Jekyll and Hyde thing.
When I am in my "leave me alone"-mode and people ask me how I feel, I simply say "I feel terrible, and there is nothing I can do about it".
It may seem a bit rude, but it is honest and ends further conversation with people outside the closest relatives and friends.

About expectations on recovery after surgery. I am planning to make DVD's of the home made VHS video featuring the kids. And I have almost convinced my wife, that we have to buy a Nintendo Wii for me the exercise my balance skills . I still have to work on that but I will get there.

In any case, I hope reading some of this feels comforting to you.

Best regards, Kenneth

[Nancy Drew]

Hi Carrie,

I am always the one to step out of the box!!!  I could probably echo what a lot have said about appreciating those cards, etc., and maybe in time you will.  But, you have strong anger inside right now.  No one knows what it is like to be in your shoes except you.  If you resent the cards and projections of others, then so be it.  It is what it is.  Maybe . . . and just a suggestion . . . if you haven't already thrown those cards away, you could make an "angry box" and put the cards in there.  You could also write down some of the comments that others have said that seem insensitive and/or inappropriate and put them in there, also.  Write out all of your anger and stuff it in that box.  I did this once a long time ago over another issue, and it helped me a lot.  Eventually, I got to the point where I could let the anger go, and it was such an empowering thing when one day I was able to throw that box in the dumpster.  And, as some mentioned above, there is also the chance that you might want to take the cards out one day and perhaps look at them in a different way . . . your choice.

I commend you for confronting your anger.  Anger is a powerful emotion, and it can be used in a productive way.  Do what you need to do for you.  But, be careful that that anger doesn't get turned inside too much because it could possibly cause some depression.  Hopefully you have a friend or a relative to help you get through this.  You don't have to go it alone.

No psychological advice meant to be given here, Carrie.  If what I said above doesn't work for you, then no biggie.  Just know that you have a place to "vent" here.  Thinking of you.

Take Care,

Nancy 

[cin605]

Hi Carry in Boston-
I am Cindy from N.H. i was diagnosed 5/6/08 w/ 2cm AN i had it removed at Dartmouth Hitchcock Medical Center in Lebanan,N.H.
I too went through lots n lots of other diagnosis before  my ear started ringing in feb.& didn't stop i went ER & asked for catscan off from there to ENT off from there to Dartmouth.
The docs said i had inner ear infections for 10 years(vertigo/sinus/clogged ear/vomit !)10 YEARS of it....I am happy to say Its out..Now i need to rest lots & heal lots.
Think it through & plan ahead.The plan ahead i can not stress enough if you have children or a job or any kind of life.Not to scare you but it will be put on hold temporaroly.
In the end i am sure you will feel relieved.
This is the best place for you to be now i wish i had discovered it before my surgery.Take care & hang in.keep us posted.

[scarriegirl]

nancy,
thank you for allowing the anger to come out.  i appreciate the sentiment in everyone else's comments about having people care about me...but that doesn't mean i am not very self centered right now....in a good way!!  i have to take care of me.  i really have a great support system...my husband is amazing as is my mom...and my dad in his always logical spock sort of way.  but the people that love me the most are saying basically how happy they are to know i have found an answer and am on my way to recovery....so to hear others (and the person who sent the card hasn't spoken to me in 15 years) express their fears and negativity is not helpful.  i am positive and i need others to be as well.  there is no room in my life right now for negativity!  i am off to the neurosurgeon tommorrow and i will let you know how it goes.  thanks for all the support here! it is a lifesaver.
xoxo
carrie

[Nancy Drew]

Hi Carrie,

Glad you mentioned that the card was sent from someone you haven't spoken to in 15 years.  I would really resent that, too.  Like, why now?  Maybe that person is caught up in their own drama, maybe not, but still 15 years .  I was scared of my anger for so many years.  I finally got to therapy many years ago because I had become very depressed. I found out I had a ton of anger stuffed inside.  Once someone gave me "permission" to let it out, it was like the flood gates opened up.  Confronting my anger made me feel "human", if that makes any sense.  I think your anger will help you heal--mentally, physically and spritually.  Feeling self-centered right now is totally OK.  It is what is helping you get through this whole crisis.  Earlier you said you were a caretaker.  I can relate.  Now it is time to take care of you, and if someone out there is blocking your way, set them aside.  I like this saying, "Surround yourself with people who respect you and treat you well."  Definitely applies in this situation, or at least for me.  I think in the long run acknowledging your anger will help you go forward in your AN journey.  It will lead you to acceptance, and then allow you to concentrate on making an informed decision.  Hang in there (sometimes those words don't help, but I mean them in a positive way), and allow your support system to be there for you in whatever way you need them to be.  Sometimes you have to say "back off".  Just be honest with them.  Tell them you love them, but you need to make the calls right now.

Cheri,

Whew!!!  As I was reading your story I was so afraid you were going to let your dad come see you when you have your surgery.  You don't need him hanging around while you are going through your own turmoil of dealing with your AN.  Not a good time to work on a broken relationship in my opinion.  Besides, if you had wanted him to come, you would have told him about your AN in the first place--not your brothers (Hopefully they had good intentions when they told your dad about your AN).  Your letter to your dad was a means of taking care of you.  You should be proud of yourself for writing that email and setting limits.  I like what you said, "It's MY tumor, MINE!"  Good words to remember when going to see doctors. also.  Although most docs have good intentions, I think you have to do what feels right for you instead of giving the doc all of the control.  I think it is good to get other opinions, research and ask as many questions as you have to in order to make an informed decision about YOUR tumor.  Then once you have made your informed decision, then you can put YOUR tumor in the hands of a doctor you trust.

Carrie and Cheri . . . You are strong women, and I admire you for taking charge of  how you want to deal with your AN.  My GK treatment is three weeks away.  It has been a heck of a process getting through this mess with having to deal with so many obstacles along the way.  For the most part, people have been very kind and respectful, but I will share a few comments that have not been helpful:   "Oh, it's benign so you don't have to worry about anything."  "Oh, you have a little AN so you are lucky."  (True on that one I guess, but sometimes this AN feels HUGE).  "Just get it zapped and then you don't have to worry about it anymore." . . . . Maybe these people mean well, but at the same time have they taken the time to ask questions or learn more about ANs.  My husband has been great . . . read the material about ANs, gone with me to doctor appts. when I asked him to, backed off when I asked him to, and treated me with respect while I was in the decision phase.  But, he has been a pain in the butt sometimes, too.  However, he is big enough to say "sorry", and that means a lot. 

So, I'll quit my rambling.  I could continue on my soap box, but I won't.   Everyone has a different story, different theories, and different coping mechanisms.  But, for the most part, the people on this board seem to come through on the other side with positive outcomes.  I am trying to stay as positive as possible and hoping that something good will come from dealing with this AN--like, will it make me a stronger person in the long run--hope so .

Nancy

   

[Nancy Drew]

It's late, and I can't get to sleep.  Just thought I'd express how this AN affects me.

 

That just about covers it all.  UPS and DOWNS AND IN BETWEEN!!!  I'll take all of the  I can get!!!

Nancy

[mimoore]

I hear ya Nancy. Oh only with my good ear!!! 

Trying hard to be strong and today I wanna cry! It is meet the teacher BBQ tonight (I am the teacher) and I am tired of being brave. Some days are a bit more overwhelming than other days. I wanna be back to normal so bad (it is so hard with my face) and maybe that will never happen.  My eye is a pain - please God let this pass.
Michelle 

[LADavid]

Good luck with the BBQ, Michelle.  I know what you mean about wanting to be normal again.

David

[mimoore]

Big hug to you Cheri! I understand, the waiting is very hard. Push those negative thoughts out! It is almost over and a new begininng without a tumour! 
Thanks David, I will where perfume (at least I will smell nice). My friend (means well) asked me when I can wear makeup again? I know I look like I am tired without it but wouldn't dare wear eye makeup with this eye the way it is. Pity party for me today!
Michelle 

[mimoore]

I mean wear (what kinda teacher am I?) Oh thanks Steve I can use the I had brain surgery again, I am sure I am only at 189 times lots more before I am at one million.   
Michelle