Author Topic: Fear Factor, frustration and TRYING to find the horse.  (Read 2809 times)

MaryBKAriz

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Fear Factor, frustration and TRYING to find the horse.
« on: April 18, 2008, 01:45:27 pm »
Hi,

As a whole, I think I have done well since finding out this news of my brainbooger, Goldie, on March 24. Since that time as many of your know I lost one of my dearest friends to melanoma. I had an emotionally HARD day yesterday. I was a mess...too much so to even reach out. Today is much better, but I am still not back to my more optimistic self. I was doing better last week after I decided to chose one of the radiosurgeries (have an app't to see that guy first part of May.) I thought I would do better after deciding that, which I am immensely comfortable with. So that isn't the issue. I think it is the realization of what I have hit me. The possible side effects with all treatments and knowing things at best most likely will not get better after treatment. My hearing is getting worse quickly and hope I can save that.

It seems like my support is quite good. My husband is absolutely my rock and dealt with my "fear factor" yesterday quite well. My elderly Mom lives with me, and you know how when people are sick they say "I want my Mommy"....she is HERE. However, she needs me. That is why she lives here. yesterday she knew I wasn't doing great and she worries TOO much about me. My 37 yr old son is dealing with serious health issues himself (we are having to help him a lot). They are really serious enough for me to be worried sick about him and he has no extra to give to anyone else, although he would like to. My 30 yr old daughter lives further away and is supportive but works long hours. It seems like everyone else wants to be supportive, but are clueless about the condition and my choices although I have explained it. I look okay. The tumor is not evident, except I walk around as if I am on the high seas. My hubby and I are always the ones coordinating support for others. I don't know how to ask for help or even what to ask for, I just know I need some support from others.

I am tired, dizzy, almost functionally deaf in that ear and have occasional twitches. I am not used to this since all these symptoms have happened in less than a year and many the last couple of months. I have also been in the midst of a mild lupus flare.

In spite of how I feel,  I called neighbors to meet to have a support of meals and emotional support to my dear friend's husband. He had said he would need help after her passing because he has no family here. This in itself was a huge statement for him. Not easy. Anyway, everyone enthusiastically said they'd be there at the meeting. My hubby and I got our home ready and the time came and went and only one person showed up....to tell what she doesn't, won't and can't do, and that other's ideas are bad, another dear friend had to work late so came 15-20 late and no one else even showed! The third "good" friend, I thought, criticized me for the time we had it (which is what everyone AGREED to ahead of time). They didn't want to change the time they were eating, her husband was "tired". The guy who thought of the meeting forgot all about it!

We had provided meals 3 days in a row when all 12 - 15 members of the family were here, we loaned them our motorhome for house guests, our home's door were open and we hugged and wept and supported, which I wouldn't change for the world because it did me good emotionally and made me feel Linda would have been happy with what we are doing!

I guess people letting me down and more importantly letting our in need neighbor down just totally shocked me. I have bragged about how great our neighborhood is. We will keep helping Scott, Linda's husband, because we care. I KNOW they would have done what we did if the situation was reversed. My hubby is going with him today to pick up her ashes since all the family has gone. Anyway, I was totally spent by the time the meeting happened and others were inconvienced??? I am NOT doing well!!!!!! I realized I was seeing my future with my AN battle. My goodness it is nothing compared to what they went through. But it IS a big deal and frightening and I need my friends. I am sad!

Thank you so much, new friends, for letting me vent. I want to be my usual happy self but am having a hard time the last couple of days. How do I find my horse and get back on it????

Take care all,

Mary
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

ppearl214

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Re: Fear Factor, frustration and TRYING to find the horse.
« Reply #1 on: April 18, 2008, 02:01:39 pm »
Mary, after reading this and all you are enduring... I could only do or say one thing... I am running in here to give you this....


HUGGLESSSSSSSSSSSSSSSSSSSS

It may not help, but I'm thinking of ya... .please hang in there.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

MaryBKAriz

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Re: Fear Factor, frustration and TRYING to find the horse.
« Reply #2 on: April 18, 2008, 02:04:11 pm »
I am a hanging in there,  ;D and HUGGLES back to ya!!!!! I always say "huggles" so it felt good to get them. Thank you for the encouraging post.

Mary

Here, horsey horsey!
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

ppearl214

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Re: Fear Factor, frustration and TRYING to find the horse.
« Reply #3 on: April 18, 2008, 02:18:33 pm »
well, Mary,... if it gets any fuglier... I'll loan you my riding crop and spurs  :o 8)... just kick the heck outta what gets in the way.... although, be gentle with the horse... I was raised riding horses...... wish I could now  :'(

Hugglezzzz!  Back atcha! Hang in there!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Sue

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Re: Fear Factor, frustration and TRYING to find the horse.
« Reply #4 on: April 18, 2008, 02:59:48 pm »
Awwww, Mary, my dear, I am feeling so sorry for you right now.  I wish I could do or say something to make it better for you.  For now, all I can say is forget the last few days, if you can, and keep that attitude that you "done right" by your friend Linda and her husband, or at least tried to, and let it go at that.  Then, you just do the One Day At A Time thing for awhile.  Don't let it overwhelm you.  And dealing with your son and your mom is something I don't have much advise for. I wish I did.    But, I, at age 60 when diagnosed also called out for my mom.  I really did say, in my head, "I want my Mommy!".  And, I did say in an earlier post on here, that I do think I felt her comfort me!  She put her arms around me and said, "It'll be all right".  So, I stopped my sniveling, for the moment, and went and took a nice long shower!  That was right after the doctor called me to tell me what I had.  I guess I should mention that my mother died when I was 15 years old. 

This AN thing can come on people very fast, even though it's been growing inside of us for a long time.  A lot of us don't have any symptoms  and then, suddenly, tinnitus, fullness, hearing loss, maybe dizziness.  These symptoms just line up and attack, one right after the other.  And even though we find out that, no, this isn't going to kill me because we have doctors who will stop it from doing that, this thing will probably irritate the heck out of me for the rest of my life and I'm going to have to adjust to differences that I can feel and taste (sometimes) and hear (or not hear), every waking minute of the day and sometimes into the night.  And, at the beginning, it can be really hard to adjust to that.  Most of us go through the 5 stages of Grief, just as for a death.  This happens for any major life crisis.  I copied this and it certainly applies to us.  I revisit ANGER on occassion!

1-Denial-"this can't be happening to me
2-Anger-"why me?",
3-Bargaining-
4-Depression-
5-Acceptance-there is a difference between resignation and acceptance. You have to accept the loss, not just try to bear it quietly.

But, boy, I sympathize with  your situation because you have a lot on your plate right now.  I honestly don't know if talking to a therapist would help. I mean, it couldn't hurt! 

Interestingly, at least to me, is that Goldie was my grandmother's name!

Take care, Mary.  One day at a time.  The AN thing takes awhile, but it will get better.  Your brain is trying to cope with what's going on and eventually it will get better.  That's something that can make you tired. It's working overtime to compensate for the changes that's happening in your head. 

Huggles from me too.

Sue in Vancouver USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
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MaryBKAriz

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Re: Fear Factor, frustration and TRYING to find the horse.
« Reply #5 on: April 18, 2008, 03:08:14 pm »
louise
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

MaryBKAriz

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Re: Fear Factor, frustration and TRYING to find the horse.
« Reply #6 on: April 18, 2008, 03:49:22 pm »
OOPS pushed the post  and didn't know it, sorry.

Anyway, Thank you, Sue. I have a call into a therapist and waiting to hear back. Hope my insurance will be okay with this. I started thinking you are right.  This  a LOT to deal with and help from someone who isn't stuck in this with me might be helpful. I love being positive, smiling and savoring life.

The best part of being almost 60 is I know often times in life bad things are grouped together. That helps you appreciate so very much in life that is not going bad. It really is life's scale. Little things are no big deal. Small things like a beautiful sunset are more appreciated, etc. I have to focus harder on the many positives there are out there.

Thank you dear folks.......HUGGLES ;)

Mary


Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

Jim Scott

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Re: Fear Factor, frustration and TRYING to find the horse.
« Reply #7 on: April 18, 2008, 04:24:32 pm »
Hi, Mary:

Again, my condolences on the recent loss of your friend, Linda, to cancer.

I've always considered myself somewhat of a 'rugged individualist'.  My attitude in most situations is that I do what I think is right.  I realize that I can't control or be responsible for what other people do...or don't do, as in the case of the no-shows for your friend Linda's bereft husband's support dinner.  That was unfortunate and clearly disheartening, but it isn't your fault.  At some point, we have to face the reality that people don't always do what's right and most folks are rather self-centered, which isn't always apparent until you call on them for help or support.  I think that's where the cliché 'talk is cheap' comes from.  Fortunately, my wife, like your husband, was a 'rock' of support two years ago when my AN symptoms flared up big-time and a large AN was found, necessitating surgery and radiation.  We've always been each other's main support through many difficult times over our almost 40-year marriage.  However, we have a large circle of friends, mostly (but not all) from our church, and they prayed for me and offered lots of help, which we didn't really need - but we appreciated the offers.  My wife didn't leave the hospital for 3 days during and immediately following my surgery.  She slept in the nurses' lounge ( no one objected) or in a chair, next to my bed in ICU.  I didn't really want any visitors but all 5 Elders of my church were there to encourage me when I was waiting to be wheeled into surgery.   Once home from the hospital, I received many calls...fielded by my wife...and numerous beautiful 'get well' cards from friends and acquaintances while I was recuperating.   I felt well cared for and, frankly, didn't expect as much support as I received.  Even now, two years later, some acquaintances I haven't seen for some time ask: "how are you?" with that note of concern you'll probably get used to hearing in the months to come.  I'm very grateful to be able to truthfully respond: "Just fine, thanks!"

The fact that you're dealing with your aged mother living with you and an adult son with serious medical issues is stressful and you'll definitely need to diffuse some of that stress as you deal with your AN.  Radiation may be non-invasive but is not necessarily free of residual effects.  You'll need some 'down-time' and you must allow yourself to focus on you for awhile.   Let others, be it your good-hearted husband or friends that actually want to do more than offer sympathy, take up the slack for awhile.  You really will need to just let some obligations and concerns 'go' for a bit to give yourself time to fully recuperate.  As they say: "If you're not 100%, you're no good to others" (well, something like that).   

Mary, based on your obvious personal strength of character (as demonstrated in your posts) and your husband's support, I believe you're going to get through this just fine.  Still, a positive attitude has to come from a basis of reality.  I fully believed my surgeon was an expert on AN surgeries and had only my best interests at heart.  He confirmed that belief by his actions, including flying in a nerve-monitoring specialist for my surgery because I had expressed fears of facial paralysis after the operation.  I had no facial paralysis and my follow-up radiation was effective but uneventful.  No neusea or dizziness, just boredom.  I felt truly blessed.  I think you will be, too.  Go ahead, be a little 'selfish' and just focus on you.   Don't let the failings of others drag you down and don't expect too much from friends, but just be grateful for what they can offer, even if only a kind word.  We all have our burdens to bear and shouldering them often turns out to a  be a singular task but one that we can conquer, even if 'a little help from our friends' is less than overwhelming at times.

Hang in there, Mary.  We're all here for you when you need to vent or simply ask a question one of us may be able to answer, and we're not going away.  :) 

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.

MaryBKAriz

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Re: Fear Factor, frustration and TRYING to find the horse.
« Reply #8 on: April 18, 2008, 05:40:56 pm »
You are terrific, Jim and tell your wife she is a wonderful "rock". I am glad you 2 have each other. My husband & I have been together 40 years and want to spend the next 40 together, too. It is a true blessing. Not many can say that. You have a lot of good solid reasonings and they gave me comfort. I will be fine, I know. I think I will find my dang ornery horse soon and when I do, he will be smiling.

Mary
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

Kaybo

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Re: Fear Factor, frustration and TRYING to find the horse.
« Reply #9 on: April 18, 2008, 05:44:27 pm »
Mary~
I just got home & am REALLY tired (of course you don't get any sleep in the HOSPITAL, of all places!) but big hugs to you -- I'll try to PM you later...

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

MaryBKAriz

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Re: Fear Factor, frustration and TRYING to find the horse.
« Reply #10 on: April 18, 2008, 05:48:59 pm »
Kay, You Go Girl! I am glad to hear you are out of the hospital. You get your rest, okay and give a hug to your girls!  Mary
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

leapyrtwins

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Re: Fear Factor, frustration and TRYING to find the horse.
« Reply #11 on: April 18, 2008, 07:16:01 pm »
louise

Mary -

I just thought you were giving a name to your horse LOL

K -

glad you're home.  Yea!!!

Now, get some rest  :)

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