Pre-Surgery Babble

Writing is my release, I love to do it.  Sometimes I write long blogs and they don't even get posted.  Sometimes the thoughts in my head move so quickly that writing them down is the only way for me to communicate what I am thinking.  So I am copying some of my old notes.  They were notes I wrote prior to my surgery.  Notes that never made it to this blog, only to my Facebook. 

I was asked the other day by someone with Chiari what brain surgery was like.  Truth is, I am not quite sure I am ready to write about that whole experience just yet.  I am slowly working up the nerve but I am just not there yet.  But I will share some of the thoughts I was experiencing prior to my surgery.  Most of you will never understand fully what I went through.  And for that, I am grateful.  But for some of the people who read this, you may completely understand because you have been there yourself.

The Countdown Begins!
I am scheduled for surgery on May 27th at Stanford University Hospital. My neurosurgeon and his team are some of the best there are and for that I am grateful. Even though these last few weeks have been a roller coaster of emotions for me, I am sure that these coming weeks will be an even bigger challenge for me.

It amazes me the thoughts that run through my mind now. I tell myself, what seems like hundreds of times daily now, that I will be fine. That I will make it through this and be back to my normal self in no time. Here is a sample of my thought process at any given moment (bare with me, usually my own logic confuses me lol)!

The evil "What If":
I tell myself that I will get to do the things that I have always wanted to do and that I will get to see my kids grow up. But the "What If's" are getting bigger by the hour. What if something goes wrong? What if I never heal properly? What if they remove too much and it makes things worse? The list goes on and on. And then the "What If's" turn to fear. And then to panic. It is in these moments that I have to breathe and search for peace. Whether it is in a short prayer or a simple hug from one of my kids or a friend who sends a simple "*hugs" text (Thanks for that Tara) I have to find that peace. It seems that the "What If's" can quickly control your entire life. The one thing I refuse to do is let it control me. I may have weak moments but I will get through.

The dreaded "Why Me!?!":
Oh this is a sneaky emotion! The "Why Me!?!" can sneak up and get you when you least expect it. Usually this emotion is following my failure to get the "What If's" under control properly. What did I do to deserve this? Why is this happening to ME!?! Why, why, why!!! Well here is the reality: Sometimes things just suck! There is no reason, no magic answer. The only answer is that it did happen and I have two choices. I can either sit in my house shouting about how unfair it is that I am barely 30 years old and facing major brain surgery OR I can put on my big girl panties and deal with it. Sometimes I just want to shout. I just want to scream and yell and cry. Thankfully, I have people around me that will listen to my tantrums and just be there for me. But most of the time I put on my big panties and I face the day. I have two children who depend on me to be strong. I need to show them and myself that you cannot let your emotions control you and that you have to choose your attitude. At the end of the day I cannot change what is happening. I can only trust that what is meant to be is happening and be grateful for each and every day that I have.

The misguided "What do I want to do today":
This is the hardest one for me. I tell myself that I need to live each day to the fullest. That I never know what will happen. That I could just as easily get into a car crash on the way to the hospital. So I find comfort in trying to live each with a little more love and a little more happiness. I try to find something new to do in each day and take lots of pictures. Sounds like great logic to me! Except here is the problem: While this seems like a take charge attitude it can actually lead you back to the evil "What If" emotion. When you "Seize each day" knowing full well you are facing a serious surgery you are reminded of the biggest "What If" of all. What if I don't make it through this surgery? And that is one "What If" I struggle with. So my roller coaster of emotions starts again.

Most of the time I am my normal self. So if you catch me on a ride just bare with me. If you are reading this and have already witnessed me on one of my rides thank you. Thank you for understanding. Thank you for being a shoulder to cry on. Thank you for giving me strength. I am finding some sort of weird strength in writing these notes. Maybe it is because I am acknowledging that I am afraid or maybe it is because in my own little way I am flipping off my fear and not letting it control me (most of the time). I don't know but either way I will get through this because I am a damn princess and that is what princess' do! ;o)

Holy Freak Out Batman...Brain Surgery in 2 Weeks!

How am I doing? Ha! Well I will start by saying that I am fine. No really, I am. That is my standard answer. That is what I tell 98% of the people that ask that question. I have found over the last few weeks that I am not so good at telling people how I feel. Which is surprising because just ask anybody and it is usually getting me to shut up that is the challenge! Maybe it is because I don't want them to worry about me. I want so badly to be the normal happy go lucky Amy that I have always been, to be the positive one that everyone is used to. Maybe it is because I know once I start to open up the tears come and once I start I cannot seem to stop. Maybe it is because I don't want to complain. I don't want to be the downer that is always complaining about poor me. Or maybe it is just because I don't always know how I am doing. Either way I cannot seem to be honest with people. So when I say that I am fine, just smile and silently know that I am not fine but that I will get better.

Truth is each day that passes seems to get harder and harder. Fear is a horrible feeling and I am not as good at ignoring that emotion as I used to be. It amazes me how difficult it is to get around right now. I am exhausted. And I don't mean if I take a nap I will be ok, I mean down to my soul exhausted. The fear in my heart is almost paralyzing. I look back to the weeks before this nightmare started and I want to be that girl again. I want to look at life as a gift. I want to be optimistic and happy. I want to love my life and everything in it. I want to be excited to go to work and excited to come home. I don't want to be angry. I don't want to ask myself why me and why now? The person I am right now is not me. Anyone who has known me for even a little bit knows that is not me. I am not an angry person by nature nor am I a person who sits back with self pity. I am surrounded by the love of family and friends. But I feel alone. I want to cry and scream and just wake up from this horrible nightmare!!!

But I can't wake up. I can't wish it away or even pray it away. Because the truth is that I have to deal with this. I have to stay as strong as possible for myself and for my kids. I have to learn that being strong doesn't mean being happy all the time. It means doing the best I can with what I have. And maybe the happiness that I felt right before all this started wasn't meant to tease me. Maybe it was meant to give me something to fight for. Maybe it is suppose to help me get through the recovery because I know what happiness feels like and I am willing to fight to get it back. I can't give up. I won't give up. Even in moments of pure fear I still make it through. I may not be as happy or as optimistic as I want to be right now but at least I am still going. And maybe that is my strength. Maybe Dori was right, "just keep swimming, just keep swimming"! What if strength isn't always about "swimming" with a smile, maybe just the act of "swimming" no matter how badly you want to stop is true sign of strength? I don't know. But for me, these next two weeks are like an evil band-aid. Part of me just wants to rip it off and part of me wants to soak it in water and slowly peel it off.

So I may not be just fine right now. But I will be ok. And after that I will be great! And after that, watch out because I will be back to my normal happy self and you all will be wishing that the hospital staff at Stanford kept me longer! =)

A Few Last Minute Thoughts...

Well the time is almost finally here. I leave tomorrow to head to the place that will change my life. Nobody can say for sure if it will be for the better or for the worse so of course there are a million things running through my mind. I have a few friends on FB that are going through the same thing as me but have not yet heard if they will require the surgery or not. I am not a doctor by any means but I hope these notes help them see a side of this that they might not have had the chance to see. The sad thing about this condition is that sometimes good news is hard to find. There is no cure. There is no magical answer that takes it all away. Even this risky surgery is not an end all. There is no way to tell if it will even work. That is the scary part. I could have this surgery, go through all of the pain and fear that goes along with it, and still get worse. The goal of the surgery is to stop the progression of the symptoms. But reality is that it doesn't always work. Even after this surgery I could get worse. It may not solve the issues and it could continue to wreck havoc on my heart. And sadly, this is what you read about most on the internet. Because most of the people who have the positive stories about how they overcame their obstacles, move on. They simply disapear off the Chiari message boards. They move on with their lives and never look back. So the good news is sometimes hard to find. But it is out there. I have had the pleasure of meeting two people on here who are the good news stories. They have had the surgery, and while they are not 100% they are living their lives the best they can. Those are the people I want to surround myself with. The people who run marathons within a year of this surgery, the people who go back to work and feel better than ever. That is what I want. I want to be the one that not only survived brain surgery, but kicked so much ass that I surprise everyone. So that is my hope. That is my goal. I will beat this and I will look back with a smile and know that all of the fears and worries were for nothing. But for now the fear is still there.

I have said this before, but the fear is paralyzing. It strikes at random times. I have noticed that the longer I try to keep it at bay the harder it hits when it finally does hit. I find myself staring off into space a lot more than normal (which was already a lot for this blonde chick lol). Yesterday was one of the best days I have ever had. I was kidnapped by Jason from work (against my will of course) and forced to eat Sushi at my favorite sushi resturaunt, hiked through the Sequoia's, sat for what seemed like hours watching the river flow and then had dinner at my beloved Thai resturaunt. Seriously, how spoiled can I get!?! But as great as it was I was scared. There were times that I didn't even hear a question. I was so lost in my own head that I didn't even know I was being spoken to. The thoughts are random. Even for me they are random. They are a mixture of "What if" and "Why me". Even great days like yesterday have a dark shadow around them. But I will survive. I will wake up from this surgery better than ever. So I have to trust the doctors. I have to trust that they will take care of me. I have to trust that God's will is being done. So I take comfort in that.

"What would you say?". That is the question of the day. No matter how hard I try, the thought of not coming home haunts me. I look around at the people in my life and I just want to scream. I want to tell them how important they are. How much they mean to me. I want to tell them to let go of the stupid stuff. To live each day better than the last. To let go of petty emotions and enjoy themselves. I want to tell them to stop getting in their own way and live their life. Its a mixture of great love for them and anger at the same time. I sometimes wish people could live one day like this. One day in my shoes wondering if you will go into surgery and never wake up. Not because I am mean but because it gives you a little different perspective. Suddenly, the little petty things don't matter. It doesn't matter what you have or what people think. The only thing that matters is love. What you gave and the people you shared your life with. If something happened to me what would people remember? What would be my legacy? Maybe if I had seen this perspective earlier in my life I could have done more. I could have given more of myself to others. I could have made it a bigger priority in my life to make a difference. I would have played with my children more, loved deeper and laughed about the petty stuff. I would have made sure that everyone in my life knew how important they were. That is what I would say. I wouldn't have waited to tell people how I felt. Because the reality is nobody is gauranteed tomorrow. We only have today. So LIVE it! Love it! Say what you feel. Take the trips you have always wanted to take. Tell the people who matter in your life how you feel. Love deeper and don't hold back. So my question to you is, what would you do? Where would you go? And most importantly, what would you say to the people in your life? Think about that for a minute and DO IT!!!

Fear is also a great motivator. It motivates me to get better. It drives me to overcome this. Because I am not done living this life. I am not done making my mark on this Earth. I am not done being obnoxious! I have so many things that I want to do. And I will get the chance to do them. So take this lesson from me. Don't wait. Don't assume you will have time to do the things you want to do.
So those are a few notes I wrote prior to my surgery.  The last one is the hardest.  To say the days and weeks that followed were not easy is an understatement.  But, I am here.  I am alive and nearly 2 years later still fighting like a girl!  Chiari may be a part of me now but it will not win.  Everyday I have hope.  And with that hope I find the strength to keep fighting.