Author Topic: Waiting for the other shoe to drop  (Read 9651 times)

anissa

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Waiting for the other shoe to drop
« on: September 11, 2009, 11:12:46 pm »
Hi Friends!  Its been a while since I've been around here but I think of you all A LOT! 

I am generally a positive person so this feeling that I want to talk about has me baffled.  Its not heavy or depressing, just a feeling of preparation for the other shoe to drop.

A quick recap, I was diagnosed in Feb with a 2cm AN, removed by translab on April 1st.  No ill effects from the surgery besides the expected right ear deafness.  A smidge of tumor was left on the facial nerve because they just couldn't get it off, total surgery was about 11 hours.  This is where it gets weird.  I feel like I'm totally ready for the Dr. to tell me that its regrown in April when I have my one-year follow-up.  I feel like I need to prepare myself even though the odds are small.  I also feel like any ache or pain is cancer.  I feel like my health has been compromised and now I know that anything can happen to me.  I look at life completely different, as I'm sure many of you do.  Not wanting to take a minute for granted.  I told my husband that if I wasn't SSD I would've practically forgotten the whole ordeal but the SSD is a daily reminder.  I know how lucky I was to have the outcome I did and I don't forget that either.  Anyway...

Is this normal?  Does anybody else wonder what comes next? 
Anissa
2/11/09 Diagnosed AN 2.1cm
2/26/09 Consult with Dr. Clough Shelton, U of Utah
4/1/09 Translab with Shelton & Couldwell
--little teensy bit of tumor or cells on facial nerve, stuck! No facial weakness, Rt side SSD
4/8/10 1-yr MRI, "Looks great!"

sgerrard

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Re: Waiting for the other shoe to drop
« Reply #1 on: September 12, 2009, 12:24:06 am »
Nice to see you back, Annisa. :)

It seems natural enough to me that having brain surgery might make you wonder what other adventures are coming your way. As far as I know, you are no more or less likely than anyone else to have other medical events. Having an AN certainly does wake you up to the fact that none of us are invincible, and now is the time to get the most out of life.

I am assuming that your recent absence on the forum means that you were busy getting the most out of your summer.  8)

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Kathy M

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Re: Waiting for the other shoe to drop
« Reply #2 on: September 12, 2009, 07:52:49 am »
Hi Anissa,

I know how you feel - this thing really rocks your world, and for me, it kinda started a chain reaction of things I never expected.  It made me feel vulnerable, mortal, and fragile.  None of these things are bad because this awareness can also make us determined to take the best care of ourselves as possible and to be our own best advocates.

I think you are perfectly normal - but if you feel consumed by thinking these things and they seem to be getting in the way of enjoying your life and the things that bring you joy, you may want to chat with your primary care physician and see if you could benefit from talking things through with a professional counselor.  I've also read where depression can also creep in and I have family members who have been so debilitated with this. 

Take good care, and I'm glad you checked in. 

Kathy
AN diagnosed 11/14/08, 3+cm, Retrosigmoid 1/13/09, Univ. Hosp., Cincinnati, Drs. Tew and Pensak
no facial nerve or eye issues!
3 more surgeries related to staph infections & osteomylitis over next 13 months.  New diagnosis of breast cancer.  Treatment completed 08/27/10.  Moving on!!!

Laurief

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Re: Waiting for the other shoe to drop
« Reply #3 on: September 12, 2009, 11:08:38 am »
Annisa,

Steve was very kind and directed me to your posting this morning. I'll be headed to Univ. of Utah on 9/23 for a translab with Dr. Shelton as well.

I had the same type of weird feeling a couple of years ago- that something was about to happen and I kept expecting to be diagnosed with something terrible. I had some basic work-ups and nothing showed up, so I chalked it up to getting older. Then when the AN was diagnosed this summer I had an 'aha' moment and felt like the shoe had finally dropped!

So glad to know that you are doing well now. My best to you as you wait out the next several months before your follow-up.

Laurie


AN 2 cm x 2.7 cm left side, Diagnosed 7/09

anissa

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Re: Waiting for the other shoe to drop
« Reply #4 on: September 12, 2009, 11:39:38 am »
Laurie, I sent you a private message.  I'm so glad to know another Utah ANer!  Well, I'm from Idaho but did my time at U of Utah ;).  Best wishes on your surgery, I hope to visit with you!
Anissa
Anissa
2/11/09 Diagnosed AN 2.1cm
2/26/09 Consult with Dr. Clough Shelton, U of Utah
4/1/09 Translab with Shelton & Couldwell
--little teensy bit of tumor or cells on facial nerve, stuck! No facial weakness, Rt side SSD
4/8/10 1-yr MRI, "Looks great!"

Darin

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Re: Waiting for the other shoe to drop
« Reply #5 on: September 12, 2009, 12:54:06 pm »
Anissa, it was interesting reading your post, because I am going thru some of the same things. I had a pretty good health track record, and at 25 to have had a brain tumor is crazy to me. Now, every little pain, or 'odd' thing the body does, I think it's something horrible. For 24 years I pretty much thought I'm superman/invincible, now I realize that isn't quite accurate. I think it's a normal emotion to go through post-major surgery. Its given me quite an ice breaker at least, and it's made me realize how blessed I am to have a family that is so helpful. I've actually made a career change as well now, having an AN has made me realize that life could be alot shorter than I think it will be, and I better go and do what I want now, and not wait. I haven't had my follow up MRI yet, so I'm a little anxious over that. The doc said he got it all, but still...I want to see proof  ;) Anyway, I hope you can relax and not worry too much about the upcoming MRI results. - Darin
3cm AN on right side
Surgery July 1st, 2009
C'mon facial nerve, you can do it!

Patti UT

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Re: Waiting for the other shoe to drop
« Reply #6 on: September 12, 2009, 12:56:00 pm »
My Dear Anissa,
  I will be calling you shortly to chat about this.  I ahve been meaning to call lately anyway, getting close to make the call and scheduel #2.   I'm sorry you are having these feelings.  I hope my experience with the regrowth have not attributed to your worries.  With the little peice of tumor left in  (as we talked about) I would just make sure they keep an close eye on it to make sure it does not start to grow again.  Just remember that these tumors grow very slowly, so if it were to ever start to grow again it most likely  would take a very long time to show up, thus the reason to insist on anual MRI's.  Having my experience I now realize that weather they leave in a little peice, take it out completely or you have radiation,  there are no guarentees it is gone for good.  Unfortunately it is something we all have to live with.  Positive attitude/outlook certainly will help one to not think about it everyday and worry about "the other shoe to drop"  But your surgery was so recent that what you are feeling is totallay normal. We feel if this AN thing could happen to us, what else can?   In my opinion, the AN experience is a "life changing" experience no matter what the outcome.  I think it is pretty common after going through this  to be more "aware" of every little ache and pain in our bodies. There have been some pretty funny threads on here over the years where we have blamed almost everything on our AN's every ache and pain.  Someone once even suggested that constipation was the AN's fault. :D  SO don't feel silly for thinking more of aches/pains than they probably are.  We have kind of learned to be our own doctors in a sense and won't let anything "slip throught the cracks" from here on out.  

BIG HUGS to Ya  :-*
Patti UT

Laurie,  I'll be PMing you as well,  I live in Utah, had Shelton the first time and actually have been thinking about schedueling the translab with him for #2 that same week of Oct.
 There are a few of us here, we have been trying to get a luch set up or somehting, were hoping to do it on a weekend in hopes that Ms Anissa could drive down ;D
  
2cm Rt side  middle fossa  at University of Utah 9/29/04.
rt side deafness, dry eye, no taste, balance & congintive issues, headaches galore
7/9/09 diganosed with recurrent AN. Translab Jan 13 2010  Happy New Year

anissa

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Re: Waiting for the other shoe to drop
« Reply #7 on: September 12, 2009, 01:31:28 pm »
I would definitely come for a lunch, that would be great, lets work on it. 
Anissa
2/11/09 Diagnosed AN 2.1cm
2/26/09 Consult with Dr. Clough Shelton, U of Utah
4/1/09 Translab with Shelton & Couldwell
--little teensy bit of tumor or cells on facial nerve, stuck! No facial weakness, Rt side SSD
4/8/10 1-yr MRI, "Looks great!"

MAlegant

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Re: Waiting for the other shoe to drop
« Reply #8 on: September 12, 2009, 01:41:02 pm »
Anissa,
I know exactly how you feel and over a year out from surgery I am having a very hard time.  I did not deal with anything at the time; took care of my family and friends and hoped for the best.  Now, I am dealing with the emotional aftermath, after setting it aside for so long. It is hard work but I guess I don't really have a choice in the matter.  Try and stay strong but above all remember that you've been through more than most people, you are different than you were before, and you deserve to cut yourself a little slack.  No one knows when the other shoe will drop but in the meantime live your life, love your family and friends, and accept the new you.
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Jim Scott

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Re: Waiting for the other shoe to drop
« Reply #9 on: September 12, 2009, 01:59:00 pm »
Hi, Anissa ~

I'm sorry to learn that you've been feeling more vulnerable than usual and I can totally understand those feelings.  As Steve and many other posters have correctly noted, the AN experience can be life-altering, on a number of levels.  Not the least of which is one's sense of mortality.  My AN adventure was complicated by a pre-op cancer scare.  Thankfully, a false alarm - but one that generated a couple of very tense days until the biopsy proved that there was no cancer.  As a committed Christian, I was prepared to leave this life but not exactly complacent about the possibility.  My wife, who shares my faith, made it clear that even if I was ready to go, if that was God's plan, she wasn't quite ready to be a widow.  Although we can joke about this today, it was a real tough thing to deal with during the few days the cancer scare was the 800 pound gorilla in the middle of the room, if you'll forgive the metaphor.  I'm sure it brought us closer together, as these situations often do.  

Another reason my AN diagnosis was a bit of a shock was that, over the years, while my wife has struggled with Fibromyalgia , IBS, Crohn's Disease and some fairly serious spinal problems stemming from a 1992 auto accident (she was rear-ended) I've been 'the healthy one' with no real physical problems.  Suddenly, I was the one running to doctor's offices and eventually, having surgery and being hospitalized.  I had always been the one visiting her in the hospital.  Now it was me...and I didn't much like it.  Although I was cooperative with the doctors, nurses and other medical personnel I dealt with, I was a bear at home.  That finally dissipated as I recovered and 'got my life back' (my characterization) but the experience reminded me that I'm not immune to physical problems.  I've always had sympathy for my wife's medical issues but now I have empathy, too.  I feel that I'm now more tolerant and sympathetic to others physical challenges.  That wasn't always the case.  I used to ignore other people's physical problems, mostly due to an immature, self-centered attitude that age and my AN experience helped remove, and for which I'm thankful.  

As for wondering "what comes next" - that sounds like a form of fatalism that I don't adhere to.  Although I'm well aware that I'm quite mortal and subject to Hamlet's 'slings and arrows of outrageous fortune' I refuse to dwell on the possibility that my debulked-and-radiated AN may somehow resurrect itself or that I'll develop cancer or whatever bad development I might imagine.  I could work myself into a real depression doing that - so I don't.  Just as I'm well aware of my shortcomings (I can't cook, sing very well or play the piano) I also appreciate what I do have; a good marriage, a fine adult son, a comfortable-if-not-luxurious lifestyle.  At my age, I'm quite aware of my mortality.  That doesn't mean that I live in fear of not living anymore.  Of course I hope I don't have any more serious medical issues to deal with, but if I do, I'll face them, as I faced my AN.  I think you will, too, on the slim chance that ever becomes necessary, Anissa.    In the meantime, I follow the advice of Jesus, who stated quite succinctly (in Matthew 6:34): "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own":  That works for me.  

Jim
« Last Edit: September 12, 2009, 02:47:57 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

anissa

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Re: Waiting for the other shoe to drop
« Reply #10 on: September 12, 2009, 03:23:43 pm »
Aw, you guys! 

Jim, thank you.  I needed to be reminded to keep it real (don't borrow tomorrow's worries) and the scripture to back it up.  I share the same commitment as a Christian as does my husband.  I think I can speak for Chris in saying that we dealt with the situation in the same way (me ready to meet my Lord and Chris not quite there, ha ha).  It is funny now but at that point it was serious business.  This AN has changed my life and I'm glad for it. 


Anissa
2/11/09 Diagnosed AN 2.1cm
2/26/09 Consult with Dr. Clough Shelton, U of Utah
4/1/09 Translab with Shelton & Couldwell
--little teensy bit of tumor or cells on facial nerve, stuck! No facial weakness, Rt side SSD
4/8/10 1-yr MRI, "Looks great!"

Adrienne

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Re: Waiting for the other shoe to drop
« Reply #11 on: September 12, 2009, 03:40:31 pm »
Hi Anissa,

Oddly, I'm almost having the opposite effect.  My story starts a bit differently though.  It started when my husband had surgery to remove a lobe of his lung for lung cancer in November (non smoker all of his life).  It hit us like a ton of bricks b/c we felt so invincible and healthy prior to that.  When it was over with and it was clear that he was going to be OK and beat it, I said to myself (and anyone else that would listen) "Hey-we made it through something SO big, we should be good for a LOOOONG time".  As you may have guessed, I had to eat those words.  Three weeks after his 'all clear' appt, we got hit with the news that I had this tumor.  So now, I *never* think "we're done-we've had our share".  Instead, I think "no guarantees in life.  Enjoy what we have RIGHT NOW because tomorrow is another day".

You ARE blessed to come out of your surgery so well.  And yes, you *may* get diagnosed with a reoccurance......but like so many things in life, it's out of your hands.  If you have to face it in the future, you will face it with the same strength that got you through the first operation.  Kind of sad that you had to go through something like that to know that you *can*, but still-you did.

Glad to see that you have found some positive already ("this AN has changed my life and I'm glad for it").

Hope each day gets easier and you don't borrow trouble.

(hugs)

Adrienne
3.0 x 3.0 x 2.5 cm AN, left side.  Diagnosed Feb. 19th,2009
Retro Sig surgery with Dr. Akagami and Dr. Westerberg on May 26/09 at Vancouver General Hospital
SUCCESS! Completely removed tumor, preserved facial nerve, and retained a lot of hearing. Colour me HAPPY!

Vivian B.

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Re: Waiting for the other shoe to drop
« Reply #12 on: September 12, 2009, 04:42:59 pm »
Hi Anissa,

Good to see you back. Two years prior to getting diagnosed I felt like I was slowing down, I couldn't put my finger on it. I would tell my husband things like I feel I am not going to be able to keep my longstanding full time job more than two years I would say, almost like I knew the shoe would drop, and it did, and then I started thinking if my body can actually be capable of growing something so rare, what else is it capable of growing? scary. But then I get back on track and think we don't know from one moment to the next. Things happen all the time, and you can't live thinking that the shoe can drop again or when as life is sometimes so random. I think that this has made us a little stronger and for those who have had treatment even more. Try to shift your thoughts to something more positive when you are feeling that way. It helps. You are entitled to have your ups and downs as long as you know that they are temporary as you don't want it to become a part of your life. You also have been trough surgery and this is a very traumatic period, it could just be part of the whole process and it will pass. For your next MRI, just think that you are now more prepared than you were when you were very first diagnosed and you are much more informed. Take care.

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

Mickey

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Re: Waiting for the other shoe to drop
« Reply #13 on: September 12, 2009, 07:53:59 pm »
Wow! Its been very interesting and inspiring to read these posts on this topic today. There are many similarities in all our lives in many ways. I get an AN! what the heck is an AN I say to myself upon hearing this. The last thing on my mind. I learn how to cope after a while, decide to W+W.  6 months later my wife gets diognosed with a tumor the size of a softball in her stomach! Next we go for tests and biopsy surgery find out no cancer but in a dangerous place if it keeps on growing. During this period of time I loose conciept of my own AN because I`m so worried about her. What to do? Come up with a plan for what we both have, tumors. I look into everthing possible to for us to stay healthy. I have posted it on the W+W message board. I talk to both doctors of ours and they agree best to W+W. We take our next MRI`s and my wifes tumor comes in reduced with mine coming back stable for 2 years now. I really don`t know what to say but I`m not going to wait for another shoe to drop. Going to live each day the best we can and put it in Gods hands. God Bless, Mickey

leapyrtwins

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Re: Waiting for the other shoe to drop
« Reply #14 on: September 12, 2009, 10:17:46 pm »
Anissa -

I felt a lot like you did after my AN surgery.

Although things turned out extremely well for me, I had the feeling that something just wasn't "right".

I didn't put my finger on it until the day my insurance company approved my BAHA surgery.  Up until that point, I knew that being SSD was making me miserable and frustrated, but I had no idea just how big an impact it was having on my personal life as well as my "business life".

Since my BAHA surgery life has been much brighter  ;D 

This may or may not be what you are experiencing; just something to consider.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

 


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