Fighting off the fear...

[wind6]

Well all today begins the count down of my last week before surgery and I am feeling terrified. I can't seem to think straight and my tummy is hurting so bad I almost think its another health problem altogether. Did you all feel this way too and what did you do to help get through it.
I am not usually one to complain or be fearful but this one is really hard. I wish someone could tell me what life will be like after my surgery next Tuesday. I am so afraid that my life is about to change forever. Will I ever be the same me again?
Cookiesecond..you are in my thoughts. I know we are in surgery on the same day. I hope you are holding up too.

[Kathleen_Mc]

I remember the week before my resection....I was still in total shock state still...I only waited about 2 weeks between diagnosis and surgery....I spent the time shopping and shopping. Now as I face surgery again in the fall (no date yet) I find when I think about it I get highly anxious and I'm sure when I'm close to the date I'll be crawling out of my skin.  To say what it will be like "after", immediately after I was heavily medicated and "spaced out" for a few days (I was on a ventilator), once on the unit I was so tired as long as the pain was under control I slept, nausea was a great problem and although I was hungry and gobbled up all that great jello and apple sauce I was still barfing a lot when I went home, about  8 or 9 days post-op. Once home I settled into a routine that kept up for a few weeks...my Dad brought me pain pills around 6 a.m., I stayed in bed when I was the only one home, I slept a lot, went out for a short walk etc.  I didn't have children and lived with me parents...I slept when I was tired and ate when I was hungry.....I didn't return to driving until about 2 months post-op, I started going out socializing around the same time I returned to driving and returned to bowling. I returned to work full-time at 3 months post-op (against my doctor's recommendation) because I was going nuts at home...although I was tired I remained mostly on nights and if I was having a sleepy night my co-workers helped me a lot but they didn't have to do that much. It didn't take long to adjust to the hearing loss, I didn't like it but oh well. I very quickly adapted the attitude if someone didn't like that I looked like I have a stroke....don't look!
Depression hit around 3 weeks post -op, apparently the surgery messed up my brain chemicals to do with mood, this continues to be a issue today, there have been times when all's well but since I found out about the regrowth 6 years ago I have been in a constant struggle with depression.
The way I see it, your life will return to "the way it was" as much as you want it to but you'll just have minor adjustments.
I'll be thinking of you in the next couple of weeks, try not to be too focused on "what if's" just take it as it comes.
Kathleen

[gemaste]

Well all today begins the count down of my last week before surgery and I am feeling terrified. I can't seem to think straight and my tummy is hurting so bad I almost think its another health problem altogether. Did you all feel this way too and what did you do to help get through it.
I am not usually one to complain or be fearful but this one is really hard. I wish someone could tell me what life will be like after my surgery next Tuesday. I am so afraid that my life is about to change forever. Will I ever be the same me again?
Cookiesecond..you are in my thoughts. I know we are in surgery on the same day. I hope you are holding up too.

[gemaste]

Sorry about my first reply   I too am scheduled on this Tuesday.  This last week seems to be very hard.  I think we need to have complete trust in God.   It will be in his hands and our docitors soon.  I hope and pray you and I both have the faith, courage and we are able to set a good example for our family and friends.  Gemaste

[cookiesecond]

wind6,
I can totally understand!!! I feel this week is flying by. There is so much i want to do but I really don't feel like doing anything. I am also suffering from a neck/back injury. I was really hoping to have that under control before my surgery. I am praying for both of us.I know God is a good God and only wants  the best for us .Most of the tme I feel peace but I also wish I knew how soon I will feel like myself. I like feeling in control and I really don't feel that I had many choices.Please let us know how surgery goes. i'm sure we will do great!! i have told my girls to get online and let everybody know how I do.
I have been told surgery will probably be 5 1/2 hours and after 1 night in ICU I will be in a regular room 5 more days. I wish I didn't have to go to ICU.
Think positive and remember our thoughts and prayers are with you.
Hang in there,
Lynn

gemaste,
I didn't realize you were having surgery Tuesday also. What type are you having? Where?
You are also in our thoughts and prayers. We need to stand together and expect God's best.
Lynn

[gemaste]

I am having the resro method.  My surgery is in St. Louis at Barnes Hosipital
1.2 CM 
Mine will start at 7.30
Gemaste

[wind6]

Mine looks like it will be translab method at St Johns hospital in Springfield,Illinois. My AN is 2.5 x 3.1. Surgery to begin at 7 AM. The doctors told my family to plan on this taking the entire day.
Yesterday I found myself crying nearly all day which makes my eye feel like it has been sandblasted but the emotional release appears to have helped today.
I want to thank you all for understanding me and for your support. It means the world to me. I will ask my daughters to come here and let you all know my outcome as soon as possible.
I will hold on dearly to your words as my days tick by and I pray that we will all be back here soon to chat with each other and share our stories in a few weeks.

[Kim]

Cookiesecond--in response to your comment about ICU; I was there for 2 nights, and it was great.  Wonderful staff, comfy (not cold, hard) room.  You will be there because the care is so concentrated and closely-monitored.  It's nothing to be afraid of or disappointed about. My ICU room had its own bath with shower, so I was able to shower and (sort of) shampoo about 24 hours after my surgery was over.  Once in my 2nd room, I had a bathroom but no shower, so I had to use a bathing room down the hall when it was free.  Think of the transfer to a "regular" room as a sort of graduation/acknowledgement of your improvement!

I remember my last few days before surgery being very, very busy with all the details of leaving my kids, home, animals, and job in others' care.  I hiked in the woods a LOT.  My mother wanted to have a big extended family dinner the night before, but I did not want that at all.  We had a quiet family dinner at home, then my husband and I spent some time in the hot tub.  I was quite anxious to get on with it; removing the tumor, going through recovery, etc.  The sooner it started, the sooner it would be over.

In response to another comment about being the same afterward, I feel I am not the same.  Yes, I am deaf in one ear and have some rare residual balance issues.  But I feel the biggest changes in me were positive changes to my outlook on life.  I am grateful for all the love and friendship I was showered with that I had forgotten I had, I am grateful for all the wonderful and beautiful things around me, and most of all I am grateful to be alive.

Good luck everyone!

[sdinapoli]

Gemaste, I had translab 15 mos. ago for the same size tumor as yours (right side.) I am 36 years old and even if the tumor grew at the minimal rate I knew that one day the tumor would have to be dealt with. Today I am doing well and stay very active. Some things were challenging for the first year but you will meet these challenges. I posted my story 1 month ago but you can only give so many details. I did not have csf leaks and headaches were never a serious problem. I also used a local hospital (Thomas Jefferson Univ. in Philadelphia) I did have some horrible neck pain on ad off for a while but even that has pretty much gone away. SSD (single sided deafness) was not a real tough adjustment but I lost much hearing prior to surgery so I cannot speak for someone that loses it all at once. Your balance will adjust quickly so relax often but push yourself to walk around often. Remind yourself that the tumor will be gone and you won't feel a thing during surgery. I woke up in the ICU and had to remind myself what I was doing there. Post surgery is no walk in the park by any means but you are not the first and you won't be the last. You will get through this. It's obvious you made your decision and it's normal to second guess yourself. Sometimes I still wonder what it would be like if I waited longer or had radiation but with all said and done I am glad it's over and I am very pleased with my choice. I no longer have asthma or allergies and I sometimes wonder that if having the tumor removed eliminated these pre surgery conditions but that is all probably coincidental. I am still unusually tired very often but my wife insists that I was like this prior to surgery. I think that maybe the extra effort of the functioning vestibular side causes a little more fatigue than normal (who knows for sure). Worrying will not make the tumor disappear so accept the challenge and the fact that it's there. Good Luck, Best Wishes! (keep us posted)  

[Lisa Peele]

Wind6, cookiesecond, and gemaste,

You have a lot of people thinking good thoughts for you!  When I read your posts this morning, I closed my eyes and thought about the time before my surgery and all the emotions and thoughts I had at that time.  It's a crazy, scary experience, for sure.  But you will get through it, and return to this board to chat and to help others get through it as well.

I only had a few weeks from diagnosis to think about my surgery.  I had a 4 cm tumor that was placing significant pressure on my brainstem, so we had no other options (and I knew this as soon as my doctor showed me the MRI scans--he was pretty blunt).  I was 34 at the time, and had no symptoms (other than diminished hearing in my right ear), so the diagnosis came as quite a shock.  I was scared and sad at first, especially once we had a consult with a local neurosurgeon and she explained the procedure and the range of things that can occur after surgery.  I kept reminding myself that everyone is affected by health issues and other tragedies/traumas in life.  This was just our current challenge--one that we would overcome as a family, and would somehow weave into our lives in a positive way.  I thought about how many people each day are told "there's nothing more we can do for you/you should get your affairs in order".  I thought, "I don't have a terminal illness--I am lucky to have the chance at life.  I am going to make it through surgery, and I will do whatever I can to return to my family as myself".

As I went under anesthesia, I thought about a man we saw skipping barefoot through the rose garden by the Mission in Santa Barbara (CA) the day before my surgery.  (I think he was exercising--lunging and jumping, breathing deeply and smiling.)  He seemed so content and so happy to be alive and doing what he was doing.  I pictured that in my mind, took a deep breath and felt so empowered, like I could accomplish anything I set my mind to...and I felt people praying for me.  That's the last thing I remember before surgery.  When I woke up, I heard my husband talking, and was able to smile at him.  We knew then that everything was going to be okay.

I think about the man in the rose garden often, and remember how that scene made me feel.   I am grateful and humbled by my entire experience--it was a gift that will continue to shape and enrich my life.  The whole ordeal was not easy--there certainly were some difficult and scary aspects--but often good things come out of less-than-ideal situations.  Other than saving my loved ones the concern and trauma of it all, I honestly wouldn’t change a single thing about it.  I have great memories of all the love and care I received, and I carry that close each day. 
 
What I've learned…

People have asked, "Were you freaking out when they told you?" (about the tumor).  My answer:  It was like my world had been filleted and laid out in front of me for me to understand.  Usually, I try to look at all the angles and immerse myself in possibilities--I have to consider everything.  But this time was very different.  Something was saying: 
 

This is just another challenge~~a stage of becoming.
 It is one of many challenges you have faced. 
You will face more and you will get through them, too. 
You must accept this.

[/i]
 
It was all incredibly clear.  There was no time for the complicated and the clarity was a gift.  I embraced this because I had to--I wasn't given a choice in the matter.  Once a decision was made regarding treatment, I realized that the only other thing I could choose was how I would respond to this task.  I began to think and repeated to myself:

I have everything.
I am safe.  I am loved.  I am not alone.
Everything I need to get through this-- it's all right here.
I am strong,
and I am going to lean on the strengths and spirits of others.

[/i]
 
I envisioned only the positive.  I felt love, warmth, peace and all the goodness in the world.  Through this experience, I learned to be at peace you have to admit and truly believe "I have it all".  I thought about all of the things I love about life, saw myself surrounded by those things...and drew strength from it.

For me, this is:


Family.
Good friends.
A sense of self.
A sense of humor.
Faith.
Joy. 
Hope. 
Peace. 
Wonder. 
Contentment. 
Love...


Life is beautiful and life is fragile.  Surround yourself with things you love today! 

I'm wishing you the very best, and sending good thoughts for you to find peace in the time ahead, and for a successful surgery.  Stay strong and positive.  Please return safely...

Lisa P.

[stein78]

wind6 - Best of luck to you, a lot of us have unfortunately been in your shoes.  My anxiety was so bad before surgery (I had 3 months between diagnosis and surgery) that I took anxiety medication.  It helped me tremendously.

Anyway, the day before surgery, I almost stopped worrying.  I could see the light at the end of the tunnel, I was almost excited.  When I woke up from surgery, I was happy it was over.  I now entered the last chapter in the AN roller-coaster, recovery.  I am now back to my normal routine and life is good.  Getting used to being deaf on my left side is tough, but I feel very fortunate that is the only problem I have to deal with.

My life has been much different after this whole experience.  I don't let little things get to me anymore.  I don't try to be in such a big rush all the time.  I have greater appreciation for my family and friends and the good times we have.

You will get through this, you will be in my thoughts.  I look forward to reading your post about how great you did!

[cookiesecond]

Lisa P.,
Thank you so much for such comforting words. Most people dwell on the negative so it is really refreshing to hear such a positive outloook. Your kind, caring words really helped me. Thank you for being such a blessing!!!
Lynn





stein78,
I am looking for that light at the end of the tunnel.I have already realized life is too precious to get caught up in the negative.Thank you for your encouragement.
Take care,
Lynn 

[russ]

Hi
  Re: Fear; My feeling is to expect the 'normal' and ~ flow ~ with it instead of intently trying to quell it by diversion or religion. I think it normal and also will not be defeated. Maybe helps to trust somewhere whether it be Dr. or divinity. I believe I'm realistic in this thinking. others may disagree, and that's ok.
  Russ

[wind6]

Just a quick note to tell you all I am so grateful for your words of encouragement and for sharing your own experience. It really does help me get a feel for what I am facing. Some of you should write inspirational poetry...you are truely incredible. Thank you again.

[shanne]

Dear All,

I've read through all the comforting lines all of you had written in this forum, and that made me feel so much better..
I'm planning for my surgery in the coming Sept 2005, and am trying very hard to build my wall of courage..
However, i do, at times, break down & cry in the nights when i think about all that's coming..
I do not know whether i could survive through all that..
Fear of dying, fear of suffering, fear of separation, fear of abandoning love ones, fear of being forgotten, fear of having squandered this,
my only life.. there were just lots of fear in me which are slowly eating my life away..

I hope we could all go through all that together, and recover as a stronger & healthier individuals..
Best of luck to all going for surgery, i will keep all in my tots..

Good luck!

Rgds,
Shanne ( Singapore )