Author Topic: 2 year anniversary pity party  (Read 4726 times)

KBL

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2 year anniversary pity party
« on: January 12, 2012, 11:25:35 am »
Yesterday was my 2 year anniversary since I found out I had a tumor.  MY surgery 2 year anniversary is Jan 29.  Since my tumor was so big (the size of a tennis ball) we had to move quickly.  They debulked the AN, then in April 2010 I had cyberknife to kill the rest off.  6 months after cyberknife the left side of my face became paralyzed.  My face has been improving, it is not droopy, but I still do not have  my smile back and I still have an eye weight.  I have a terribly dry eye which causes blurry vision.  I am tired and wonky.  I have not driven since my surgery. I am not working and do not go anywhere alone.  I get overstimulated sooooooo easily.  I have been to church once in 2 years.  It left me exhausted. 
For the most part I have been staying positive. Most of the time I am fairly happy.  People tell me I'm amazing and am a role model. Also that they have never heard of an AN as big as mine. (BIG DEAL, do I get a cash prize)
After surgery I spend 10 days in the hospitals rehab unit.  It was a positive experience. I was so happy that they sent a Psychologist in to talk to me because they were worried that I was so happy.
It seems like I have had friends bail on me.  I hate to complain to the friends I see  because I don't want to drive them away.
How long can I expect to see improvements?  I hate to see pictures of myself now.  I will turn 50 this summer.  I come from a family who lives into their late 80's or early 90's.  Is this what I get for the next 40 years.
Also I am beginning to realize there is a certain stigma for people who have had brain surgery.  I am beginning to think I should talk about it less with new people, but then how do I explain my wonkiness to them.  I also know that I am blessed and things could be so much worse.  Also still waiting for disability.  I was denied and am waiting for a hearing.  Thank you all for listening and for any encouragement.  I guess it this the fact that my 2 year anniversary is here and I expected to be doing better than this which is causing this pity party. :'(
5.6 cm. left side retrosigmoid surgery January 2010.  Dr. Villavicencio, Boulder, CO  Cyberknife April 2010  Left side  facial paresis started September 2010.  Gold weight implant Dec. 2010.  Total hearing loss on left side.  As of today, tumor still appox. 28x18x8 mm

Jim Scott

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Re: 2 year anniversary pity party
« Reply #1 on: January 12, 2012, 02:43:00 pm »
Hi, KBL ~

I'm so sorry to learn of your discouragement as you approach the second anniversary of the discovery of your large AN.  Your AN-related problems are fairly common but of course that doesn't make them one iota less daunting to live with 24/7.  The dry eye sounds quite problematic as it prevents you from driving and taking part in life.  The fatigue is also part and parcel of AN experience but that too is a detriment to your quality of life and so, you have reason to be less than pleased with the way things are going. 

The good news is that, in most cases, facial mobility improves and so does the dry eye, although that may never return to 'normal' (whatever that is).  In short, how you are today is not necessarily how you'll feel or look next month - or next year, for that matter.  The experience of having friends abandon you when you're dealing with the aftermath of your AN surgery is all too common.  There are a multitude of reasons for this phenomena to occur but suffice it to say that all you can do about it, for the most part, is 'move on' - without them.   

I'm pleased to read that you're staying positive in the face of these adversities.  That indicates character and a well-founded sense of optimism.  If you have a religious/spiritual faith, now is the time to employ it as you struggle with discouragement and negativity.   I suggest that when meeting new people, a brief mention of your AN surgery to explain your 'wonkyness' is sufficient.  Most folks don't really want too many details, anyway.

Please don't allow your seeming lack of progress in your recovery to hinder you from pressing forward and 'getting your life back'  I'm sure others will add their own encouragement and suggestions for you and I urge you to try and remain connected with the AN community via these forums.  We understand how you feel (and why) and we want to support you however we can.  Pleas continue to allow us to do that.  Thanks.  :)

Jim
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.

HisHands

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Re: 2 year anniversary pity party
« Reply #2 on: January 14, 2012, 10:11:09 pm »
Hello KBL!  I'm Emma and a Newbie  :)  When reading posts from friends on this forum (even though we've never met), I feel as though a bond has been formed.  It's comforting to know that years from now (based on what I've seen on this forum), encouragement to anyone experiencing a rough time will be given.  Surely Jim's post (and I'm sure you will receive more from others) has given you some encouragement as you enter "Year Three".... 

It was mentioned that you've always been told you're a good role model and a happy individual, so I'm praying for focus on your strengths and that your faith will sustain you during your time of discouragement.  Since you are not driving at this time, perhaps your church has an outbound group that will pick you up for services, help grocery shop, etc.  Many churches, of all faiths, usually have this type of ministry and they also plan small outings for dinner, movie, etc.   Ditto on Jim's statement about briefly mentioning your AN surgery to explain occasional "wonkyness" then move on to enjoy new friendships.   It sounds like you've pushed hard to get through two years, so hold your head high and give another push for a better year ahead!  Saying a special prayer for you.... Emma
Emma
1.5 x 1.5 x 2cm AN in left ear;  MRI 11/16/2011;  GK on 12/16/11

...In Your hand is power and might and Your hand gives strength to all.... I Chronicles 29:12

KBL

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Re: 2 year anniversary pity party
« Reply #3 on: January 17, 2012, 03:53:13 pm »
Thank you Jim and Emma,
I find this organization to be amazing and has helped me a lot though this journey.  I have had a busy last couple days with a couple outings with friends, that makes a huge difference.  My husband is home with me all the time and we get along great and he take me places when I need to go.  I have not been attending church because it makes me exhausted.  I went to a womens brunch at church on Sat.  and it was great, but also left me physically exhausted.  I am going to try the womens morning bible study on Tuesdays, as long as I can arrange a ride.  We live in a rural area, just a couple miles outside city limits.  (But there is a woman in our area who goes to this  study, I have not met her but talked to a mutual friend and I am trying to arrange something.)  This will mean I will not be able to plan on anything for the rest of the day, but that is fine. 
I have a verse that I cling to: Romans 8:28
Thank you again
Karen
5.6 cm. left side retrosigmoid surgery January 2010.  Dr. Villavicencio, Boulder, CO  Cyberknife April 2010  Left side  facial paresis started September 2010.  Gold weight implant Dec. 2010.  Total hearing loss on left side.  As of today, tumor still appox. 28x18x8 mm