ANA Discussion Forum
General Category => AN Issues => Topic started by: Vivian B. on March 19, 2009, 11:16:56 am
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Hi everybody,
I am wondering if anyone has been experiencing same emotions. How do you find enthusiasm again in your daily activities knowing that you have something like this to deal with, whether you are waiting for treatment, whether you are debating treatment or whether you have had your treatment? How do you know you have made the right choices. Since I found about my AN, I feel almost robotic, at home at work, with basically no life in me. Is this normal? Even sleeping pills are not helping me. I would love to share your experiences.
Vivian
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Hi Vivian,
First of all, you are entitled to feel like you are having an Out of Body Experience. Finding out that you have a brain tumor is not something any of us expected or welcomed. I remember feeling like you do. I was just starting a new school year and was not sure that my classroom had meaning for me, much less the students in it. The first thing you need to do is read and research your condition before you make any decisions. Send your MRI off to any doctor that you hear about--start with the House Clinic in LA. Get as many opinions as you can before you make up your mind about surgery or radiation. You will hear a lot of us talk about a gut feeling and it is true. I went back and forth between the two approaches and eventually I knew what I could live with. You need to be your own advocate because the medical profession is just like any other service industry. The more you know, the better prepared you are to deal with them.
In the meantime, the people on the this forum--the forumites-are ready and willing to share our experiences with you and give the benefit of years of experience in dealing with ANs. There is a wealth of compassion, wisdom, and much needed humor to be found here.
Stay in touch and keep the questions coming!
Priscilla
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Vivian:
I'm 9 months post-op, and have my bad days. Sometimes I have bad weeks. The past 7 weeks were pretty miserable for me since I began treatment for headaches with Pamelor. The whole time I've had zero energy. That alone is depressing because I've confined myself to the indoors only leaving the house to go to work. I don't know how I managed to get to work, but I have. Just this week I've resumed my daily walk after about a 4-week interruption.
I find that maintining my routine helps keep me sane. Even if I feel like crap, I have to get to work. I find that once I'm there, I concentrate on my duties and sort of forget about my issues. There were recently layoffs at work and I'm doing my best to stay of the next chopping block.
Just as I'm getting back some energy, I get hit by one whammy of a headache. The entire morning I spent fighting the headache. Once again, I managed to make it to work.
I take it one day at a time with the hope that one day soon I will not have to take drugs for headaches.
What decision is it that has you in doubt? Are you scheduled for treatment? Maybe getting more opinions about treatment would help you.
Before my surgery, I read and researched and got several opinions before I realized that there was no right answer. I chose retrosig with the hope of saving my hearing and knowing that retrosig is often accompained by headaches afterwards. My word recognition is at 20%--yeah, pretty much useless. But I don't know that any other treatment choice would have come without the headaches.
Staying in touch with the AN crowd has helped me a great deal. I hope it will help you too. Post questions as often as you need. There's alway someone to lend an ear and provide support and make us laugh. Hang in there.
Syl
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If you hop over to this thread you'll find people, like you, who are trying hard to cope with the AN battle.
http://anausa.org/forum/index.php?topic=8593.0
All I can add is that it takes a lot of time for the brain to physically adjust, and it takes time for us to mentally adjust, and if you need help, by all means seek professional guidance and/or meds to help you get to the next step. Everyone is different in how we manage this, and that depends on so many things, such as our overall personality, how bad our symptoms are, our support "team" at home, and a host of other things. Don't despair, as it will get better.
Sue in Vancouver USA
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Vivian ~
What you're probably experiencing is a form of emotional shock. Your life has been turned upside down by the AN diagnosis and you have a host of very important decisions to make. Feeling disconnected is a way the mind employs to deal with overload. You're worried - stressed - and that can be debilitating when the worry and subsequent stress cannot be controlled.
First thing you have to do is face the harsh reality of having this tumor and the unavoidable need to address it, whether with radiation or surgery. Although the options can be daunting, eventually you have to make a decision on how you'll treat this invader. Frankly, any decision you make will be somewhat of a a risk. You have to accept that reality, too. As much as I wish it were otherwise, there simply are no guarantees here. Whatever treatment you chose could have some side-effects or post-op/treatment complications. It happens. You have to accept that. We all do (or did).
Remaining positive is the key. This is where, no matter your specific religion, having a spiritual life ('faith') can be very comforting. It certainly comforted me when I was waiting for my surgery and has done the same for many others. If that isn't a viable option for you, then simply doing the necessary research and eventually choosing both a treatment approach and a doctor is even more crucial than ever. You simply must have absolute faith in your doctor, his knowledge and his skill. Understanding that you cannot avoid some risk, you go forward with a positive attitude based on the fact that you're determined to get through this and will deal with whatever happens, if and when it happens. Then, you try to distract yourself in whatever way works best. Helping others and taking your mind off yourself is always a good plan. Many can attest to it's effectiveness. :)
Jim
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Thank you all for all your support. I am now in watch and wait, but I am already having anxiety about treatment options as you all say there is no right choice but an individual one that you can live with. The forum has been great and I will keep on posting as only the people who are going through it or have gone through it know exactly how you feel despite all the good support you may have at home. I have gone back to work as the first week and a half were difficult. Sometimes I feel as if I am not there or as if everything is moving without me as if I have stepped out for awhile. I am hoping that once I get closer to deciding, I will make the right choice. For now I am hoping that the wait and watch approach is the right one as recommended by my neurosurgeon. By the way I am from Canada, health system different here. The symptoms I have are becoming annoying such as ear blocking, ringing, ear ache some headaches, but managable. I think the only thing I can't manage is my mental state of mind which I need to take control of otherwise I feel that I may start to get sick and won't have strength for either treatment. I wasn't able to eat for the first two weeks, slowly eating now but without appetite. I lost about 8 pounds in about two weeks, not healthy.
Thanks again
Vivian
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Hi Vivian,
I was on the watch and wait for 5 years. My tumor was very small. At the time of surgery, my tumor was only 5mm by 8mm, still small but now growing. I did my research as all the others have suggested and I too, had that gut feeling that I was finally making the right decision. Once it was made, I told myself that there was no going back and that I was going to remain positive no matter what the outcome would be. I realized that this tumor was not going to kill me, it might change my life somewhat but I would make the best of it. After surgery I had several temporary problems that most of us have experienced, But as I said they were only temporary. I have only lost 15% of my hearing in my AN ear. Believe it or not, this tumor gave me a second chance in life. It helped me to not take things for granted and enjoy each day as much as I can. When I feel down and depressed, I think of the moment I opened my eyes after surgery and realized I was still alive, a smile comes across my face, I feel truly blessed and realize that things really aren't that bad. Hang in there, you will survive this. I wish you the best. Ann
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Hi there! Right now you have made a choice of Waiting and Watching a while. Pesonally I think thats the best idea untill you establish youself with what you have. At the beginning of this AN journey is most probably the hardest. Try to take it one step at a time with knowledge and goals. Everthing should fall into place. I`m there with you going thru similiar things for close to two years. My life has pretty much been back to whatever normal can be. It took a little time from the first shock of everything just W+W untill something tells me otherwise. Believe it or not I`m actually feeling good! Keep the faith, your going to be alright! Mickey
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Thank you Desilu and Mickey,
I am trying day by day to accept what is happening. What is freaking me out is as I said before, treatment options. I am confident now from everybody's comments, that when the time comes I will know which treatment to choose. I have learnt a lot from this forum and everybody is so supportive. I am lucky to have found it.
Please keep on posting your experiences.
Mickey, let me know if you find any new sites with information about treatment.
Thanks.
Vivian
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Hi Vivian.
For me the I have the support of my girlfriends Pauline, Chris, Susie (who is battling lung cancer) and my cousin Teresa. My husband has been wonderful, I've cried many nights wrapped in his arms. I'm dealing with post operative issues and I am also watch and wait. My sons' lives are busy with university, college, grade 12, and work. They know when I'm having a bad day and will pick up the slack around the house. They tease me, they love to talk about political and world events, our family life, what's going on with them. My boys are mischievous and know how to get my mind off of my pain and they do keep me going.
My faith has faltered, no that isn't the correct term, my faith is evolving. It is a becoming of age for me. I have been blessed with so much, just reflecting over my blessings has helped me to tackle each glorious new day. Headaches, facial pain and whatever else that comes my way is mine to deal with. I am on meds and I thank my Drs and the GOOD LORD that the meds are there for me. Maybe you need to go on an anti depressant.
With a combination of my family, friends, the meds, my faith and this forum, my days are sunnier.....even in a wicked blizzard of snow or a powerful thunderstorm. Somedays are a blur because I'm in bed or sleeping on the couch. I've had to turn down many social occasions because I haven't felt well enough to go. It use to bother me but not any more. I need to do what is best for ME!!
You will find your way Vivian.
Take care,
Anne Marie
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Hey Vivian
Give yourself time - and we should meet for lunch.
I was pretty sensitive for the first few weeks and out of skin for the first couple of months - and I can't say I am perfectly calm at this point either, but I don't think or let this AN rule my thoughts each day. However, it has taken me a few months of a lot of time thinking about this situation to get here.
My 6 month MRI is now just over 2 months away - and I am finally not anxiously counting down the days (but trust me I am still counting). I have moved into a happy zone of what will be, will be. I have done way too much research - know way more about hearing loss than I think a healthy 37 year old should know, I have researched ad nauseum gamma knife versus surgery. I have yet to meet the surgeon but my appointment will eventually be scheduled (gosh darn Cdn system). I have spent countless hours researching - and the conclusion I have come to, it was a tremendous waste of time - I probably could have come to the same conclusion with much much less fretting, less lost sleep, less wasted time - time much better spent living my life right now.
So, I have stopped fretting - que sera, sera. On May 21 at 6am I will have my follow-up MRI, on May 22nd I will celebrate my eldest's 7th birthday (and have started contemplating the birthday party ... YIKES) ... then I will wait out until June 12th, yes TWENTY TWO DAYS LATER, I will get the results. At that point, I will make the next decision. I have accepted that it might have grown - but more than likely will not - I will remain in W&W. I have absolutely no idea what choice I will make if W&W is off the table - think the options of surgery versus radiation both suck - and but don't really care at this point - one of the two, it will become obvious given the circumstances at the time. However, I have decided that I will sacrifice hearing in order to avoid any treatment because it is the right decision for me. As long as I have no seriously debilitating symptoms, I am in the camp of doing nothing.
Most important, once all that has played out, I will celebrate my baby's 2nd birthday ... and a few days later, Father's Day ... then after that, glorious summer.
For the record, I 'test' my hearing at home (and definitely have noticeable hearing loss), I have been having bouts of balance issues/vertigo/spins, my ear is full for a chunk of the day which makes hearing in loud rooms difficult because sound reverberates, my eye has an odd delayed blink on the AN side - but I went biking yesterday with my two eldest (my butt now hurts) and went ice skating today with the same pair,and a friend.
I am having fun and this thing isn't going to ruin it.
Keep going, and give yourself lots of time - you will get there.
Ann
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Hi Anne and Anne Marie,
So good to hear from you. I will slowly get there I hope. It's just the anguish feeling and anxiousness that are still sticking around. So good to have all the support. By the way Anne I have all the same symptoms. As of tonight (I think) I may be moving to the next step in accepting that there is nothing for me to do right now until my next MRI which should be around September 09, then will come the next step. I am hoping as I get closer to having to make a decision, the right decision will come to me.
I keep on thinking as you said Anne, both options suck, but at least there are options.
Talk to both of you soon.
Vivian
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Vivian,
I was devastated when I first found out. I started having anxiety attacks and falling into a depression. I couldn't eat and would get up and cry in the middle of the night. Even now, 5 months later, sometimes I still can't believe it.
I found that first week to be unbelievable hard. This forum helped tremendously and I just researched until my eyeballs hurt. However, I couldn't function properly with the anxiety and depression.
I prayed and went to church and asked God repeatedly...not to cure my AN (I don't think it works like that), but to give me mental strength to get thru it..that is what I begged him...to make me mentally normal and i could deal with it. Within days, I was back to my normal state of mental health. Not happy, mind...but no more depression or anxiety. I think he answers those prayers in abundance. Once I was grounded again, I started sleeping normally and exercising.
I spent 6 weeks before making my decision, constant researching. I have no regrets with CK, because I was having symptoms and knew I had to do something. Right now the tumor is swelling, and hearing is just ok. Sometimes I get sad, but I just don't got there. I know this sounds terrible, but sometimes I read about all the true tragedies in the world and my problem seems liveable and insignificant. That's how I deal with it sometimes and move on.
Wishing you the best. Tisha
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Hi Vivian,
Sorry I'm a little late coming to this thread but thought I'd put in my two cents worth. As you can see, the emotional rollercoaster you are on if a familiar ride to all of us. Finding out you have an AN and then deciding how to deal with it is daunting, to put it mildly. I was shocked and overwhelmed when I first learned I had my AN, even though I already suspected it. Thinking you might have something and then finding out for sure that you do are completely different things. My neorotologist was the second doctor I saw after my diagnosis. His support and willingness to answer all my questions by e-mail made my life a lot easier. Finding this forum and all the wonderful people here also was a tremendous help. I don't think I could have gotten through the AN experience nearly as well without all the support and information I got here. Understanding exactly what was happening to me and having a thorough understanding of my options and most of the possible complications of each helped me make my treatment choice. I, as many of us have, just felt in my gut that my choice was right for me.
The best advice I can give you is research, reserch, research. I spent many a sleepless night researching ANs and their treatment on the internet. Ask any questions you need to that will make your choice easier, whether you ask here or at a consultation with a doctor, or both. Come here for information, to vent, have a pity party or whatever you need. We understand what you are going through and will be here to support you however we can.
Best wishes,
Wendy
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Thanks Wendy for all your good thoughts.
Vivian
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Hi Tisha,
Thank you for your support. Always good to hear from people with same experience.
Vivian
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Hello Vivian,
I just responded to your PM. I know it feels like the rug was pulled out from under your life. I was very depressed for quite awhile. All the questions...the search for answers...the why me?...your life on hold.....I was so afraid of what was to come. The good news...there is a silver lining. Life can still be very good!
I was sitting in the waiting room before having the markers implanted for the radiosurgery feeling very sorry for myself when a 9 year old boy was wheeled in to the waiting area. We struck up a conversation while we were waiting and he must have sensed that I was feeling pretty down because he started trying to cheer me up. Here I was a big strong 45 year old man who has already lived a wonderful life faced with a non life threatening tumor being cheered up by a boy who is obviously undergoing chemo and radiation for cancer. I vowed from that day forward not to let this thing get me down. I'm not always 100% successful but whenever I catch myself thinking about myself all I need to do is think about the strength of that kid.
Today I have a very different outlook on the world. Like most folks I used to think I wish i could have this or that...thinking the grass was always greener elsewhere. I admit i still play a lottery ticket now and then but in reality I've already won the lottery. I was born into the greatest nation on earth at the peak of its power, during a time when medical science could do something about what ailed me....I would have died 100 years ago from childhood asthma and never grown old enough to drive into the city of my birth to one of the best hospitals on the planet for treatment of my AN in a football field sized proton accelorator. Of all the people that have ever lived on this planet I'm probably in the top 1% richest, and i'm just a middle class guy from Boston. When you think about what luxury we live with today you realize that kings and queens of the middle ages didn't have such luxuries. Even the poor in the USA of today live opulent lives in comparison to the wealthy of ages ago. We have so much to be thankful for.
Then for me..even more importantly...there is my family. My folks were two of the kindest most caring people on the planet. I miss my Dad terribly but my Mom gives me strength to this day. I have 4 great brothers and sisters, we watch over each other like hawks and are as close as we can be. My wife....I was lucky enough to meet my soul mate at 17. I love her more today than i did when we married. She continues to amaze me..she is my rock, my true strength, the best friend a person could ever ask for and an extraordinary mother to our girls. My girls...i couldn't be prouder or happier...they turned out like their mother...with a little bit of spice from me... ;)
Now for the silver lining.
After treatment...for the first 3 years I needed every bit of that support. I've had a hard time for sure and it was difficult at times to fight off the why me feeling. I struggled with work, often couldn't drive, yada, yada.... I was on a downward spiral for sure. I had gained weight from lack of exercise. Things didn't look good. Then I got lucky. My brother made me a gift of a standup paddleboard. It took me months to be able to stand for more than a few minutes if there was even a ripple on the water. Today i go out in conditions that people without balance problems think I'm crazy to try. Along the way I lost 40 lbs of fat and gained muscle. i'm in the best shape I've seen since I was 25 (I'm 51 and feel 30). I had a deep love for the ocean when I was young. Life had never taken it away but it had put roadblocks to access. My lifestyle now revolves around surfing...as soon as I finish typing this I'm headed out... the tide is right and there are waves today. The bottom line....despite all the issues...and i still have some...life can be very fulfilling. I'm having a blast!
My recommendation....understand that things will change...accept it....hell...embrace it...its a new you. Find something you can be passionate about that exercises your balance and work harder at it than you ever thought possible. The sense of achievement when you get over the top is just as important as what it will do for your balance.
Here's a little video of a "balance challenged guy" to help you understand where this can take you. I've never felt more alive than on days like this except for perhaps when my girls were born. PS..surfing is a LOT easier in clean surf.
http://www.youtube.com/watch?v=MOmZung9fv4 (http://www.youtube.com/watch?v=MOmZung9fv4)
Last August I paddled 28 miles across Cape Cod Bay for charity...we're planning this years now.
http://www.capecodbaychallenge.org/ (http://www.capecodbaychallenge.org/)
So...keep your chin up...keep fighting...find some passion....life is good.. :) :)
Bob
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Hi Vivian,
I was dx Friday of Memorial Day 2008. I became obsessed scouring for information, and discovered this board early on. Like others have said, it was a tremendous source of comfort and information. I haven't been on because after 6 months of obsession, I mentally needed a break. My thoughts and prayers are with all of those struggling before and after treatment for this, as well as those suffering otherwise. I have been given good advice by many here. I am from the camp that wanted to avoid surgery if at all possible. As has been mentioned, some of us lean strongly one way or the other, and it is a personal choice. I live a good distance from any places treating this type of thing, so my initial appointment was not until the end of July at Mayo Clinic. I was just told here by ENT that I was facing surgery and some tough times, but I'd be o.k. I shot off a question to the Cyberknife Forum re: size tumor etc, and was told that it was possible I was a candidate for radiosurgery. Knowing that time was on my side, I tried really hard to keep busy with summer, family activities. My first appt. confirmed I was a candidate for radiosurgery, so then I decided I would set an appt. for after Sept. and getting my daughter to college. It's a long story, but I did more research, decided I wanted cyberknife vs GK as my hearing is fairly good. More time passed than I would have liked, but ultimately I had CK at Stanford Nov 10-14. During this time, 2 acquaintainces were diagnosed with end-stage cancer - one has since passed. One dear friend is almost to the end of his time with ALS (Lou Gherig's) sp ? disease, and a work acquaintance was dx with ALS around the same time as I with the AN and he's been given about 1 year to live. My nephew has end-stage renal disease which is very prevalent in this country, so I have been involved in learning about this, as I was screened to be a donor. If people are lucky enough to get a kidney, they must be diligent about meds, etc. and it's not a permanent cure. The kidney will wear out. It's either this or they deal with the rigors of dialysis daily. There are many who make the most of it and it's now part of their life. But initially, they didn't want that either. I'm rambling. As has been said, you could say "why me" but then why not? One of lifes puzzles. I believe there's a reason, and I need to learn a few lessons. Just my perspective. I do look at life differently. I'm more grateful, as others have said, I'm more patient, I'm trying to slow down, and see life from other's perspective. One of the forumites said, something to the effect that maybe tomorrow, we'll be told we have something, and a little zap or operation isn't going to make it better. That hit home. I got to this point after alot of shock, why me and obsessing. I'm now almost 5 months out and overall have been doing well until a bump in the road last week end with bad vertigo. It was nice be aware this was not out of the norm from so many on this board. You'll get to a place of peace too, it may take some time. Keep researching, asking questions, take one day at a time, then when you do come to your gut decision, it may be beneficial to step back for a piece of time and give your mind a break.
This will settle in somehow and you'll get along o.k. Take care, Mona
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Hi Anomar11 and Stoneax
Thank you both for taking so much time to acknowledge what I am going though. I am slowly but surely getting there, although my anxiety sometimes gets the better of me. Hoping to shake it off soon!
Talk soon.
Vivian
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Vivian,
I going to tell you a secret.................shhh............I hope you can keep it.........anxiety still gets the better of me when I least expect it!! Sometimes I know its coming so I do my best to get through it. You are a smart cookie my friend, with a wonderful family, you will get there!!! Everyone one of us on this forum knows what you are going through.
Take care,
Anne Marie