It could be worse

[Nancy Drew]

I have been posting here a lot lately so forgive me for asking questions that might sound stupid.  My MRI in May showed small growth of my AN, and my hearing has gotten slightly worse and quite bothersome at times.  I have told a few people, and many that I consider to be good friends, about the AN growing.  I get a lot of, "Well, it could be worse."  That is true, but it is my ear, and I worry about it.  I know there are people out there with incurable diseases, people dying is war, or maybe dealing with the loss of a child or a spouse.  These things are worse, but it doesn't mean I am insensitive to others who are going through unthinkable things in their lives.  I volunteer on the oncology unit at The Children's Hospital, and I see kids who would love to have a tumor like this--benign and something that is not going to kill them.  It puts my life in perspective being there, and I feel for these kids.  Some make it and some die.  It is sad to see those little kids struggle, and most do it with more strength than I think I could ever conjure up.  But, the AN is a part of me that I know might cause more serious problems down the line.  I was wondering if any of you get this "it could be worse" talk from people, and if so how do you deal with it.  I cry a lot about my situation and get angry, but I don't share much with my friends any more except you guys and my therapist (of course, I pay her to listen!).  Would love hearing from anyone with this same situation.  Do you just let it roll off your back?  I hope I am not doing the same thing with people who have different problems.  I just feel like in my mind sometimes that it is "all about me", and I consider myself to be a compassionate person.  If I am insensitive to others, then I am a very crappy social worker.  nancy

[leapyrtwins]

Nancy -

ironically the only person who has ever told me that "it could be worse" is me.

When I was told I had a "growth" in my ear I had no idea what it was and I was fearful that it could be life-threatening.  Even when I was told that the growth was an acoustic neuroma I had no idea what that was and I worried that it was cancerous.  Once I found out that ANs are rarely malignant, I realized how truly lucky I am.

In this day and age, where so many are diagnosed with cancer, where young men and women go to war and don't get the chance to grow up, where children are killed by gunfire in the streets of their neighborhood, I thank God for giving me an acoustic neuroma.  One of my daughter's best friends was killed in a car accident two years ago at the tender age of 10.  That could have been my child; but thankfully it wasn't.  I tell people daily that what I had could have been a lot worse.  And I say to my doctor every time I see him "Do you realize how lucky I am?"

I don't know what you mean when you say "the AN is a part of me that I know might cause more serious problems down the line".  The two most serious AN problems I can think of are facial nerve damage and single-sided deafness.  I am SSD and I can tell you it's not that earth-shattering.  Yes, I didn't like it and I opted for a BAHA, but being SSD is not the end of the world.  As for facial nerve damage, since I don't have it, it's hard for me to personally say whether or not it's a serious problem.  But I do know people on this forum with facial nerve damage - like K and Nancy - and I can say with confidence that they are living life to the fullest. 

Life is what you make of it.  It's okay to cry and get angry, but don't spend too much time doing that because there are a whole lot of better ways to spend your time.

Don't be too hard on yourself.  Having an AN isn't easy.  But, remember, it's not the end of the world.

Jan

[Nancy Drew]

Yes, Jan this is beginning to be a process that I am learning in baby steps.  Each day I deal with a new challenges.  I have found some neat people that I love spending time with because they are loud talkers.  So there is a positive.  Someone can talk behind my back, and I can't hear it anyway!! And I can learn to appreciate for now that I have hearing that isn't that darn bad, so yes, I guess I am truly lucky after all.  We don't always get what we ask for, and sometimes what we get sucks.  But, there are positives to be found, and there are so many inspirational stories here on the forum, than it can indeed put life in perspective.  It could be worse, no doubt, but as time goes on then maybe it will get better too.  Thanks for the words of wisdom that I have learned from all of you.  You are a remarkable bunch of people.  Thanks for sharing your stories.  Nancy

[Sue]

Hi Nancy,

I've "talked" about this before on this board i.e. our feelings. This is an important subject to discuss and I do have my opinion...so here we go, Nancy!

  No, this is not the worse that can happen.  Most of us realize that, and most of us know that we are far better off than many people with a chronic disease.  A few of us are in a position to think the worst has happened and deservedly so, because they are in the small percentage that has more severe consequences of this stupid disease.  That being said, we still have the feelings and the frustrations of having something wrong with us that involves some heavy duty medical care. Some of us have micro-surgery on our heads which involves cutting a hole in our skull and digging around in our head, for crying out loud!  Others get a walloping dose of radiation beamed into our head in pinpoint precision to nuke that stupid thing.  Yikes!  This is no small matter.  It's scary. It's frustrating.  It's depressing.  It's all sorts of things.  This is a major "thing" wrong with us.  Just because it's "benign" doesn't mean that it doesn't leave lasting problems to deal with.  It only means that it's non-cancerous.  But it's not friendly, that's for sure.  So!  Your feelings are valid.  I say, "No, this isn't the worse thing that can happen to you, but it might be the worst thing that's happened to you, SO FAR."   Hopefully this is the worst that will ever happen to you.  It's been difficult for me to explain to my family and friends how this affects me.  I have a hard time describing some of my symptoms and sensations that I have.  And, it doesn't take other people long to get bored with another person's illness.  Especially once they know that you aren't going to be dying any time soon!  These past two years have been hard and tiring for me. But not as hard as it is for some AN patients.  I don't have headaches.  I have minor balance issues.  It's mostly an annoying thing that I've tried to learn to live with and it takes time.  It's hard because our symptoms can be relentless, and it takes an adjustment period to learn to cope with all of that. 

 But,for anybody who dismisses you with a "Well it could be worse!" (And what you might be hearing is " Oh shut your yap, you cry baby. You aren't dying, so get a grip!" and what they might be thinking is " Wow, I am so glad it isn't really life threatening for her, because that really would have scared me.")  I'd just look at them and calmly say, "Well this is the worst that has happened so far to me, and I don't like it one bit, and I wouldn't wish it on my worst enemy."   Maybe that would make you feel better and maybe they'd realize that this is a life changing event for you.   It's either that or you smack 'em up side the head, and that's probably not an action you really ought to go through with, even though you wish you could!

So, don't dismiss your feelings because there is nothing wrong with feeling alone, frustrated, annoyed, angry, irritated, scared, anxious...every negative feeling there is.  It's part of the process to get to that better place that you'll eventually get to.  So, do something nice for yourself. Get a pedicure or spa treatment, or visit someplace special, or do whatever it is you like to do to make yourself feel special.  That helps sometimes to have some "me" time.    But, I think sometimes, what most of us wants is our Mommy.  When I was given the news over the phone about my AN from the doctor, my first thought after I hung up the phone, was "I want my Mommy!".  I was 60 years old!  Who cares?  I still wanted my mommy.  That's the return to the fetal position, turn the electric blanket up to 9 and wake me up when this is all over with syndrome! HA   Seems perfectly normal to me.

Take care of yourself and consider yourself hugged, okay?

Sue in Vancouver, USA

[leapyrtwins]

We don't always get what we ask for, and sometimes what we get sucks.  But, there are positives to be found

Very well said, Nancy 

Jan

[sgerrard]

Well this is the worst that has happened so far to me, and I don't like it one bit, and I wouldn't wish it on my worst enemy.

I wish Osama Bin Laden would get an acoustic neuroma. 

If someone said "it could be worse", and i felt like making a comeback, I would say "yes, it could get worse, that is one of the things that concerns me about it." It probably won't, but in principle it could, and it would be a snappy retort.

I have a brother in law who was recently diagnosed with bone marrow cancer. His prognosis is more grim than mine, to be sure. The odd thing is, he really has no symptoms so far. There is something particularly personal about an acoustic neuroma, because it hits you where you live, right in the brain. You hear weird sounds, you react to loud restaurants and big malls, things don't sound right, you feel wobbly, your ears get plugged up - it affects the way you think. At one of our local ANA meetings, Marg said "not a day goes by that we all aren't made aware by something that we have an acoustic neuroma." She is about a one year post-op.

The fact is that ANs are mentally taxing, more so than most other ailments. They don't hurt as much as some, and don't incapacitate you as much as some, and don't threaten you as much as some, but they can wear you out mentally as much as any of them. I know that for me, this has been the most serious and expensive medical experience of my life, and hopefully it will remain so. I never used to have anything good to write on those medical history forms; now I have a dandy entry to make.

Steve

[wendysig]

Nancy,
I have not had anyone but myself say "It could be worse."  It ahs been implied though, by people who say things like, "Well, at least it's not malignant,"  Same thing only silghtly different phrasing.  I know they mean well and are truly glad that it isn't malignant, but because it isn't, some seem to think it is not a big deal. Most of my friends and family who know are usually very supportive, but not all and not all the time.  Some of them deifnitely seem to think I have dodged some kind of bullet by having a benign tumor.  They don't take into consideration that I am about to have major surgery or how this has affected me psycologically.  I consider myself a compassionate person too and although I am not involved in doing any charity work or volunteering right now except for whatever work I do for my daughters' school, I am not a self-absorbed person either.  I do consider myself lucky in many ways' lucky this is not malignant'; lucky I have a wonderful doctor; lucky my kids make me laugh every day; lucky to have the friends and family members who do care; very, very lucky to have all of you for support. 

Wendy

[Sue]

Steve I agree 100% with you about AN's being "mentally taxing".  It takes a lot of work trying to re-direct your energy away from all that is going on physically and trying to concentrate on not concentrating on what ever effects you have with this crazy thing.  That includes the hearing impairment, the off-balance thing, and any number of other things that we may have going on. For me, I have facial nerve involvement and that creates issues with the left side of my face.  Hmmm, let's try to ignore the numbness, yet it can tingle a bit around the edges, my nose is cold and drippy, the inside of my mouth and tongue has a mild "burnt" sensation, salty taste going on. And, yeah, I've got that noise in my ear that won't SHUT UP for one minute.  Oh, and walk on my right side, because I can't hear you as well on the left side.  And then somebody says, Well, it could be worse.  And you really want to scream back at them...Yes, it could be worse, but this still sucks, okay! 

So, Nancy.  We are all on this road to peaceful co-existence with our new companion in our life, and it can be a bumpy path.  It would help if everyone in our life knew exactly what we were going through, but they don't.   They never will.  I guess we just have to look at them, when things are said that we don't find particularly nurturing or caring, as well-meant, but with out a clue.  You are in a Secret Society that they know nothing about.  Take heart, Nancy, because other Society members know and care.   That's what we are here for.

Have a good week,

Sue in Vancouver, WA

[Jim Scott]

Nancy:

Someone telling you that "it could be worse" may seem insensitive but you probably know that the folks who say that to you are (a) attempting to say something positive and, (b) have no idea what having an Acoustic Neuroma entails.  With that understanding, you can better deal with their mistaken attempt to be positive in the face of a friend's medical crisis and their too-casual misconception of what being an AN patient means in real terms.  That others have more serious problems doesn't really help much.  My brother-in-law died of brain cancer just a year before I was diagnosed with my AN.  Obviously, my sister was sympathetic to my diagnosis, surgery and radiation but hardly able to relate completely because what I had was benign and operable.  I'm still here...her husband isn't.  Besides, pre-surgery at least, we generally look perfectly normal.  Not sick.  That minimizes both sympathy and real understanding from others who (in ignorance) might well be thinking "how bad could it be?". 

That the tumor is where it is makes the problem, not it's non-malignancy or even it's small size.  My radiation oncologist said that an AN is only problematic because of it's location.  Otherwise, it would be more of a nuisance than a real problem.  He makes a good point.

However, I've found that most of my friends had about a 30-second attention span when I started describing my AN, the surgery, radiation and my recovery......so I don't.  My response to any questions about my health is: "I'm fine, thanks".  I'm a somewhat private person and although everyone I know was fully informed about my AN and wished me well and/or prayed for me, I was never interested in making my AN part of my persona...so I didn't.  Once I had my (successful) surgery, I quickly rebounded and made a big effort to put the AN thing behind me.  I knew most of my friends and acquaintances had their own problems and didn't want to hear mine so I accepted their praise for 'doing so well' (post-op/radiation) and dealt with the minor issues I had, on my own, confiding only in my totally supportive wife.  Besides, I'm an impatient type and looked at the AN as an intruder that I had dispatched and that I refused to now allow it to be my main focus.....so I didn't. 

I believe that no matter what life hands us, it's how we deal with it that is most important.  I know that axiom has been overused to the point of becoming a cliché, which is too bad, because it's still quite true, in my opinion.  I choose to medically address my large, pressing-on-the-brainstem AN and put the episode behind me as much as possible in terms of how I live my life.  Others, some with less successful outcomes than I had, do the same.  Many of them post here regularity and are inspiring people. 

Nancy, I trust that as you accept and deal with the reality that you have an Acoustic Neuroma and that no matter what you do or how you feel about it, the AN could negatively affect your life, you'll probably come to terms with it and choose exactly how you'll deal with whatever the consequences are - which may be few - and begin to cease being stressed and upset.  It's a process.  We've all been there.  Me, too.  I faced it head-on, was extremely fortunate (prayer helps) and moved on to wellness as soon as I could.  You'll find your own path, I'm certain.  Being scared, angry and anxious are all part of the process we've referred to.  Under the circumstances, these emotions are not necessarily narcissistic but simple self-awareness and angst.  They should pass as you grapple with the real issues of treatment, doctors, facilities and the minutia of coping with whatever consequences ensue from that treatment...hopefully few. That you are focussed on this serious health issue is perfectly legitimate but it shouldn't remain your total focus once you're treated and recovered.  What others say (or think) cannot be controlled so I wouldn't be overly-concerned about it.  Just take care of yourself, don't make the AN become all you are to people and try to be strong and positive as you go forward. 

Jim

 

[cynthianz]

Hi Nancy, my surgery is now just 3 sleeps away (translab to remove nearly 4cm left AN) and in the 4+ weeks of waiting since diagonosis I did not know how to feel from one day to the next.  I wanted to be careful not to frighten my two little ones, but really needed my husband to just sit in a room with me and let me cry and cry.  I think this scared him as he is my advocate, my rock who tells me "You are coming through this, you will live" and him, I believe.  Even when, like you, I kept thinking "it's getting worse, it's getting worse, WHAT are they going ot tell me in hospital?!"

Agree withall that others have said - about it being scarey bc of being in your brain, about the guilt that how can I complain when my 4 yr old nephew has leukemia and my FIL has recurring kidney and liver cancer?  My therapist wanted to make me a tshirt aht said  IT IS ALL ABOUT ME.    I think i'll just think about that for awhile.    So, people are right, maybe it could be worse.  Buy for you, for me, in this moment, with all those we love and live for, this is the most shaking and shattering bit in our lives.  May God please continue to bless us and let us come through it with grace and strenghth to leave it all behind (and may be improve my typing skills again)

Looking forward to my updates in a few days.  As have not packed a bag yet and have phone calls to family to make, not sure I will be on the forum much between now and whenwe leave for hospital on Wednedsay.   

Cheers to All ----  Hold Tight!  Cynthia Morris

[er]

Dear Nancy,
 Like the others I don't think I have really had anyone tell me it could be worse. But I have had them stay a way from me because they hurt to see me the way I was at first. Or not talk about my problem because they knew it would depress me. I don’t know which was worse.

There are so many words of wisdom on this forum. All of you have been given the gift of wisdom. Thank you.

Sue , I like the way you put it ," I want my Mommy!"  In my case," I want my Husband!"
eve

[Sue]

Evelia, my mother died when I was only 15 1/2 years old.  Speaking of situations that could be worse....She had breast cancer and died a few months shy of her 41st birthday.  That was back in the day when there weren't as many medical options.  She went through surgery and radiation. No chemotherapy then.  And radiation was nothing like now. Nothing like what I had.  It was brutal for her.

I did almost think she came to me and put her arms around me and told me it was going to be okay.  Then, I said, Thanks Mom and went in and took a shower and straightened myself up before I talked to anyone else about what the doctor said.  But, I really wanted to stay in bed and just hide.

So, yeah, it could be worse.  I've had a wary eye out for breast cancer for years. So what do I get?  My dad's family has diabetes and that one snuck  up on me, and then I get this acoustic neuroma junk.  Okay, so the fates gave me something I've never even heard of, but I will admit, a little bit interesting.   So, here's another weird thing:  my poor mom has a mastectomy, my father had polio as a child and as a result had to have one leg amputated.  And their daughter gets to lose most of her hearing in one hear.  My aunt, my mother's sister, lost her vision in one eye as a child due to an accident.  My uncle, dad's brother, lost an arm because of medical problems late in life.  Is this weird or what?  HA   My Aunt is the only one still with us.  She just had her 79th birthday and is going strong.

Sue in Vancouver USA

[LADavid]

Nancy -- When "normal" people tell me that it could be worse I want to take them by the throat and throttled them and scream -- "How the hell do you you know what worse is?  You're normal."  They go along with the idiots that say "You know, with a good attitude you'll get better."  I know a lot of those idiots.  But there are the few that stay by me and accept and support my struggle that I will be forever indebted to.  I don't know how long my recovery will take, but I do know that when I do recover, those people will know how much they meant to me.  For the record they are Dani and James and Mark and Linda and Donna and Jeff (and of course I'd like to thank my agent Jessica).  They will someday know what they meant to me instead of those who haven't.  It's my focus.

David

[yardtick]

Oh yeah, I agree it could be worse, no doubt.  This battle though isn't a walk in the park.  I'm not the same person I was a few years ago.  I was the life of the party, now I hear the word party and I run and hide.  I suffer from chronic headaches, ear pain, facial pain, balance issues and temporary palsy from time to time.  I can't hear out of my left ear, my smile isn't what it was, and anxiety and depression are a battle. This facial neuroma is not life threatening so that is a blessing, but I will need a nerve graft. 

Its hard to be upbeat at times.  I have a few girlfriends who are very supportive.  Every now and then I have to remind my family how bad I feel and why I go to my room and shut the door.  My house isn't as clean as it was, but that's the least of my worries.  Work was a battle, but I'm off at the moment on disability.  Everyday is a fresh start.  Some days or good and some aren't so good.  This forum has helped me immensely.  Hang in there because yes it can be worse.

[Pooter]

Others have said it all, so I don't have much to add.  However, its one thing for someone who has walked in our shoes to say "it could be worse" but quite another to have someone who hasn't say it.  I, too, have had many people tell me that and I didn't think anything of it until after my surgery.  They have NO IDEA what we go through, the issues we deal with on a daily basis, etc...  They're idiots.  But, they know not what they do/say...  Take care of you first!

Brian