Once You've Made Your Decision. . . . . .

[Nancy Drew]

Another question.  I am about 95% there in making my decision to go ahead with GK.  I have one more doc to see Aug. 6th.  Even if he says W & W, I am most likely going ahead with GK since my AN doc wants me to do it now.  The psychological part is what is getting to me, and I don't think I can go back on the W & W list.  OK, so you have made the decision to go ahead with treatment, and then let's say your procedure is scheduled for a month down the road.  During the wait time, what in the heck goes through your mind?  Does the obsession go away, calm down, or what?  Also, do you start doubting your decision?  I just want to go in and see the doc and say "Let's do it and can we do it tomorrow?"  I am sure that is not how it works.  Just interested in how you guys get through the wait period before your treatment?  Also, has anyone ever gotten to the point right before your treatment gets started (like you are on the table!) and had second thoughts? 

Nancy

[lori67]

Nancy -

I never had the option of watch and wait as I was way beyond that point when I was diagnosed.  I imagine it would have been difficult for me as I am not a patient person to begin with.  I am learning how to be now.   

I never had any second thoughts as I had complete faith in my doctors, from my primary who sent me for the original MRI right down the to one who would be sewing my head back together.  I also had enough faith in my own decision making to trust that I was doing the right thing for me.  I did my research and knew what needed to be done.  It probably helps that I have 4 kids, 2 dogs and a husband - that doesn't allow me much time to obsess over anything!   

Someone once told me if you spend your time worrying about something that may happen, and it doesn't happen, then you worried for nothing.  And if you spend your time worrying about something that may happen and it does happen, you still worried for nothing - because it happened anyway.  I'm sure it was more poetic sounding than that when he said it, but I think you can get the picture.  I remind myself of this all the time because I don't want to spend my time worrying about things I can't change - I just have to put my trust in the powers that be, my doctors and myself.

If you had asked me 2 years ago if I thought I could have brain surgery and go on to lead a good life, I probably would have said no - but I guess I'm stronger than I gave myself credit for because here I am - 18 months after brain surgery and I'm doing great.  I have a feeling you are stronger than you think you are too and you will get through this.  In the mean time, you can always burn off some of that nervous energy - I hear cleaning closets is helpful!   

And since I'm quoting here...here's another good one.. "forget that blind ambition and learn to trust your intuition.. plowing straight ahead - come what may".  (Jimmy Buffett).

Lori

[ppearl214]

Nancy,

I made my decision in early March, 2006... had my treatment one month later.  Never 2nd guessed my decision, had faith in my soul I was doing what was right for me and my particular situation.... and the support here during that waiting period was tremendous to me.  Now, just as an after thought... we know counselors help with "coping mechnisms"....do you have someone locally to you that you can sit with and spend time to discuss any anxieties you may have and they can work with you on coping skills?  I ask this for one reason... with radio-treatment.. it's not just the wait up to the treatment... but the wait to hear (down the road) that the treatment is working.  It takes a great deal of mental strength to endure the wait... and there are days that I sit back and say to myself "enough, I don't wanna play this game no more".....We know you are going to have overwhelming support from everyone here..... but we can only do so much.. and I want to make sure that there is someone professionally trained, in the wings, to offer support as well. When I made my decision, I met with the CK social worker... it was of great help to me... maybe worth a thought as well to help with any anxieties you may (or may not) endure.

Hang in there....
Phyl

[leapyrtwins]

And since I'm quoting here...here's another good one.. "forget that blind ambition and learn to trust your intuition.. plowing straight ahead - come what may".  (Jimmy Buffett).

From one parrothead to another, just let me say "excellent quote, Lori" 

Nancy -

no second guessing for me.  I had complete and utter faith in my doctors and the rest is history.  Once I made my decision I didn't look back - I figured, what was the point?

I was offered the option of watch & wait, but only for a few months.  However, I'm not the kind who can just sit back and relax - in most circumstances in life - so watch and wait wasn't a realistic option for me.  Neither was radiation.  I would have been a basket case (or a nut case) between the treatment and the "waiting for necrosis" stage.

IMO watch & wait is for folks who don't worry - and I am not one of them 

Jan

[Syl]

Nancy,

I hate to be kept waiting. The time since the day I was diagnosed in early Dec. 2007 to the day of my surgery, June 16, 2008, seemed like an eternity, especially after my original surgery day, May 19, 2008, was postponed. The time after I decided on treatment, however, was somewhat less stressful. I had gotten 4 opinions and decided on translab. Not once did I 2nd guess my decision. I was just so relieved that I had reached a decision. Then I met with the 3rd surgeon from my surgical team. His opinion tipped the scales in favor of retrosig. I finally made up my mind about 10 days before my surgery. I went from translab to retrosig and don't regret changing my mind.

To tell you the truth, I don't know how I got thru that time. It wasn't easy.

Syl

[Nancy Drew]

Thanks for the replies.  I guess I am having a difficult time because I didn't think this darn AN would ever grow, and it is still small and not causing any big physical problems like major hearing loss, etc.  However, I know it might be growing; my hearing is starting to be affected, a little wobbly feeling, tinnitus that just started last week--but they are all minor compared to what most people here are going through.  W&W makes sense in a lot of ways, but I can't get my mind to go there any more.  So, I am pretty sure the 5% of me that is undecided pops up from time to time and causes this terrible mental torture.  Perhaps after the next docs opinion on 8/6, I will get to 100%, and I will be fine and get past the obsessing.

As for professional help.  I have been seeing a psychologist and psychiatrist on and off for over 14 years now to keep my bipolar disorder under control.  I have a Master's Degree in Social Work with a specialization in mental health, but it is often hard to "treat" yourself.  However, I am taking a psych break right now.  The last time I went to see my psychologist I was prepared to say, "I can continue to W&W until I have my next MRI in Nov."  Totally couldn't get those words out of my mouth.  Therapists are great, but they can only do so much.  I don't think hearing "How does that make you feel?"  "What can you do to care of yourself?" etc. is going to work for me right now.  That kind of stuff worked for other situations in the past, but it doesn't seem to be helpful in dealing with the AN right now.  In fact that last session made me feel like I had "failed" therapy, and I know there is no such thing.

However, please, if anyone out there just read the above paragraph, go for professional help if by all means you feel like it will help.  There is a lot to be said about good things you can accomplish in a therapy especially if you are going through a difficult situation--and dealing with an AN would qualify as a "difficult situation".

Maybe this question was a bit premature since I haven't really said "yes" to treatment.  I really can't relate to a lot of you yet, but thanks for listening and for the wise words.  I know I will make it through this process.  I just have to be patient.

Nancy

 

[Mickey]

In my case I`m almost forced to wait and watch. I`ve found out about this about a year ago (by accident)  and have had the practically the same symptoms for half my life (30 yrs.) I asked my DR. whats to gain and he said possibly nothing. As of now I have tinnitus with a minor high pitched hearing loss. Last 2 mri`s are stable 1.2mm X .06mm next one in SEPT.  I`ll treat it the way it treats me I guess, what else can I do? I do speak with 3 other wait and watchers of 20 yrs. 10 and 10 yrs. who are in similiar shape. This is a great board any suggestions welcome! Mickey

[JerseyGirl2]

I decided on my treatment in early July 2007 and, since it meant I was going to be across the country for two weeks and needed to coordinate several schedules, requested my surgery for early January 2008. It wasn't too difficult at first to put it out of my mind since the surgery seemed -- and was! -- so far off in the distance. As the time drew closer it was harder not to think about it, but I did my best. I never had any second thoughts about my treatment and, frankly, since I didn't have any symptoms other than hearing loss, was not at all physically uncomfortable during the waiting period. I didn't tell too many people about it until a month or so before the surgery, a strategy which worked well for me, but may not for everyone. I maintained an optimistic attitude and dubbed the trip a "sightseeing and surgery vacation." As others have commented elsewhere, I experienced a really tangible feeling of calm as the time approached ... which further convinced me I was doing the right thing.

[Jim Scott]

Nancy:

I didn't have the luxury of Watch-and-Wait so I can't offer much credible advice specific to that issue.  I knew something had to be done and my neurosurgeon made it clear that time was of the essence.  I just plowed ahead and the time from my diagnosis to surgery was about 3 weeks.  It would have been sooner if not for the cancer false alarm that pushed back my surgery date 10 days until they figured out that I didn't have cancer. 

In your case, waiting is clearly detrimental to your mental health and so, proceeding with treatment is probably the better course, overall.

Your decision, of course, but I think that 5% doubt is ephemeral at this point.

Jim

[sgerrard]

The last time I went to see my psychologist I was prepared to say, "I can continue to W&W until I have my next MRI in Nov."  Totally couldn't get those words out of my mouth.

That's how you know what your gut is telling you.

I found that I was very relieved once I had decided on treatment and set the process in motion. My only worry was whether there would be an issue with the insurance company. In an odd way, I was actually pretty excited when the treatment day came around. "Here we go, doing something about it at last!"

You'll see.

Steve

[Omaschwannoma]

IMO it's always better to make a decision than not to make a decision.  With AN's there is NO wrong choice here, surgery or radiotherapy or W & W, each choice has their own unique set of consequences. 

I remember driving myself nuts trying to figure out every aspect of every treatment so I didn't make the wrong choice or decision on a life-altering dx.  After making my decision (surgery), I continued to find out ALL I could with that and so continued to drive myself nuts.  In the end a wonderful person said to me, "Time to let the professionals take care of you, you did your work/research, you made your decision now let them do their job."  It was then I found peace, right up to the very minute of drifting off, I learned to close my eyes, let go and free fall.  I continue to free fall to this day and it's great!

[Pascale]

I totally know what you are going through.... until last week I was certain I would do surgery as I want this out out out!!! but I'm starting to freak out in regards to the post-op. I know many had gotten a lot of positive outcomes, and that I cannot know what will happen in m case, but I think each of us always get scared of the worse that could happen....

Next week I will see a GK specialist, Dr Hodgens in San Diego. I've benn told he is really good....so we will see. The only concern I have with GK is that my tumor won't stop growing, making further surgery dificult to remove the tumor because of scarring... and also, my tumor has been growing faster then usualy, about 5mm per year...so GK might not stop it..I don't know...

But I understand where you are coming from, and it is reaaaaallllyyyy overwelming...some days I feel so down and ready to trow the towel. But I know I need to keep looking, reading and meeting with doctors until I find what I wanna do. I guess that when you meet the right doctor (either surgeon or radication) you will feel it in your gut and will help you make your final decision.

We will get there:) be strong.

[JulieW4]

Nancy,

I think most of us can empathize with what you are going through.  I do believe the time leading up to the decision is harder than once you have made the decision.  I had first decided on surgery without fully knowing my options.  Once I found out that radiation was an option, info I found mostly through this site, then I researched my radiation options even though I already had a surgery date scheduled.  Once I realized after consulting with many docs that surgery was best, I only had to wait 7 days until my surgery date.  I feel confident that once you make the decision on your treatment you will find some comfort and less anxiety.  But it is normal to not have all of it disappear until after your treatment is completed. 

As you know you always have these forums for support.

Jim Scott, I have now looked up my second word in the dictionary after reading one of your post.  The first word was "inveterate" and now the second word is "ephemeral".  Not only do these forums provide support for us ANer's but I also am expanding my vocabulary.  Thanks making me smarter after having brain surgery.   

Julie

[Lamsue23]

Nancy,
     You are at the right place to get all your information and support that you need.  I found out 1 1/2 years ago that I had my AN.  I also pushed the panic button. Discovered this forum and did all my research with all the suggestions these wonderful an'er's have.  My neurosugeon suggested that my best thing to do was surgery but to watch and wait for awhile.  They did MRI's every 3 months and only until now did they say it's growing and it's time.
     During the year and half, I took a break from the forum because I was making myself sick 24/7 thinking about this tumor.  I decided to enjoy my life and put this tumor aside until now.  August 6th is my surgery.   I am very ready and feel calm about it.  You need to take a deep breath, research all the information that this forum has and you'll know when it's time, and so will your doctor.
     Good luck in your dicision, we're all behind you.  It will be OK!!!

SueL/NH

[Nancy Drew]

Gosh,

All of the replies have been great and very comforting.  I do think I can congratulate myself for W&W for 2 and 1/2 years without really freaking out very much.  But, the reality is that the AN is growing, and I am starting to have some new symptoms that are really bothering me.  Psychologically I know I will be better off to go ahead with GK now rather than later.  At least I feel confident knowing that I want to go the GK route, so that is a positive in the bag.  The waiting is really wearing on me, and I hope once I get a date I can do some "relaxing" on the nerves.  Steve, you are totally right that my gut is talking to me.  I am listening to it, and I think I am shouting back at it now-----yes, yes, yes . . . . . .go with it!  Thanks to all of you for sharing your stories about how you have handled dealing with your AN and also for the reassurance that I will get through this decision making process.  Maybe the new cricket in my ear is also telling me to go ahead and follow my gut as well.  Gotta love ya Jim Scott for giving us all of these new words to add to our vocabulary.  I looked up "inveterate" already and now I'm heading to the dictionary to look up this one-- "ephemeral". You make this board fun so keep on testing our vocabulary.  Are you the one who writes all of those test your vocabulary words in The Reader's Digest?  BINGO, I think I have solved the case of your true identity. 

Nancy