Brain Scan-Mayo Clinic

I arrived at Mayo Clinic early this morning, and can I just say that the people who drive to work between 7-8 am everyday......I am so sorry.  It was stop and go the entire way to Mayo Blvd.  I will be getting  brain scans every 3 months FOREVER.  All that really is, is an MRI, 45 minutes of pounding, and hammering on my brain--I survived, not my favorite thing to do, but necessary for Dr. Barr's to see what is going on between my ear and my brain.....not much.

Let me explain this doozie.  When I arrived at the hospital they took me in to prep me for the scan.  Included in the visit is an IV.  I warned the nurse not to use anything less than a 22 needle, and to not use my left arm, wrist, or hand.  She smiled and assure me she knew what she was doing. I then announced "Please listen to me, I know.........." then she plunged the size 20 needle into my left hand, immediately I concluded "you just blew out my vein" The nurse then said "How did you know what size needle to use?"  "This is not my first rodeo, after 5 years of being poked and prodded I've learned the left side has no veins left,  if you had let me finish before you  stuck me I would of let you know, 

my experiences have taught me" She then advised me "Since you've had a port on your right side, you shouldn't use the right side, I'm sure your oncologist has told you not to use the right side for at least 10 years, since your lymph nodes were removed?" "Um, no he has never told me anything like that" "Who is your oncologist?" I looked up just in time to see a familiar face, and she recognized my face also.  Beaming, I said "Lindsay right?" she reached in to hug me, "Yes, how did you remember my name?" "I'm not sure, I just did, but I'm not sure why, or who you are" a few small laughs.  She then affirmed  "I was your nurse on the 5th floor, when you had your nerve go dead, how are you doing?" "I am fantastic, except for this blown out vein ...... just here for a brain scan" "Oh dear, I'm sorry about the vein, let's see if I can get a smaller needle and use the other hand" The previous nurse disappeared and Lindsay finished up.  What a great surprise, I love when I get the pleasure of running into the great staff who have served me over the years.

One of the reasons I love Mayo Clinic so much they always have my results the same day.  I ate lunch, then met with Dr. Barr's.  He is so great, always has a big smile and a sweet compassionate heart.  The results of the brain scan looked good, the cholesteatoma has no regrowth, there was a little liquid build up, but nothing for me to worry about.  Dr. Barr's took time to talk to me about the facial paralysis, he wanted to know how I am dealing with it.  It's hard to say I'm OK with it, I'm not.  Of course I wish things were different, I explained I am trying to deal with 'being OK' if the nerve does not fuse back together.  I added, I'm not used to people looking at me then quickly looking away, I have gotten to the point that I look away now, so they will not have to be uncomfortable.  He then looked at me with his big smile and acknowledged what I was feeling was normal, but that he loves who I am, my personality and my heart.  I have to admit, it was a good boost for me, I needed to hear exactly what he had to say.

I will be going to Cleveland Clinic next week for some more surgery on my eye, I think when I get home I will be finishing all the rest of my surgeries up at Mayo Clinic.

Trusting

I believe the worst pain a mother can feel is knowing her children are struggling with something you cannot understand or comfort them with.
There have been times when my doubt has been as wide as the ocean, feeling like the waves need to sweep me away, not wanting to face the pain.  Our oldest daughter Kayla and her husband Jeremy have two amazingly beautiful boys.  Recker is almost 5 years old, it's so hard to believe how fast he is growing.  Ezra will be 2 in February, he's been a spunky, smily fun babyboy.  These little angels have brought more joy to my life than I ever thought imaginable.  Their laughter and unconditional love is contagious.

Ezra's squint eye..so cute

Ezra love

When Recker was 14 months old he was diagnosed with Autism, he is non-verbal but has taught me to speak with my heart and eyes.  The past 5 years have been so difficult for Kayla and Jeremy.  Something I don't even try to understand, all I understand is that if it were not for Recker, I would have not made it through some days when I could barely get out of bed--he is my sweet baby boy, who saved me from going to a very dark place.

Two days ago, Ezra was also diagnosed with Autism.  I was so sure he was just fine, he was making animal noises, something Recker never did, he could point to the different parts of his body, again I don't remember Recker doing that.  Over the past few months Ezra has started to regress, although Kayla was trying her hardest to prepare us, it could be true, I just didn't want to believe it, after all Ezra was doing everything different, until he didn't, and little by little he has become distant.
Kayla did everything different with her pregnancy, thinking maybe it would be different, Ezra didn't get his shots like Recker did, she just did everything different--Now we know, his diagnosis comes as a shock to Eric and I, but not so much to Kayla and Jeremy, who I can honestly say have tried to  prepare us for.

Recker School Picture--I love this

Recker lives in an awesome world--I wish I could go
there with him.

When I found out I just wanted to scream "WHY?" I still do, I am hurt, angry, sad and blessed all at the same time, these mixed emotions have rocked my little world, and is going to take a few days, weeks or months to get used to.  I just want Kayla and Jeremy's dreams of having a typical child come true.  This does not mean they do not love their boys, they love them more than life, but not to hear your child say "mom, or dad" is heart breaking.  They need time to mourn, I guess we all do.

I don't  in any way shape or form believe these boys are doomed, that they will not have a future that is anything less than we, as family teach them.  I know they can and will be, such a blessing to our family and to others.  In fact I believe through their journey, they will be the ones who against odds will teach us, through their sweet spirits they will teach us so much more about compassion and tolerance than we could ever learn in a book.

So, it leaves me with doubt, fear and the unknown but I know one thing for sure and I can never say this enough, Heavenly Father send those sweet boys to our family for a purpose.  We may never know what that purpose is, but have decided the reason does not matter as much as making the journey with them memorable and happy.  Autism is not fun, it is mis-understood.  I know so little about why a child is diagnosed with Autism,  all I really know is that nothing for me changes, I love them unconditionally, I will take them by the hand as they lead me and guide me back to a place where I want to be HEAVEN.

The truth stings

Hip and back pain, back in Dr. Freeman's pain clinic today at Mayo.  I love my doctors, he is a good man, they all are.  Walking into the hospital gave me uncomfortable feelings of remembrance, being in pain for me has become an issue  I won't address unless it get to at least on an 8 on a scale from 0-10.  The medicines for pain I despise.  When I walked into the hospital today I immediately looked to my left, this is where I watched a woman die while the paramedics tried to save her, and I was jealous, I wished it had been me.  I'm not afraid to die, but enjoy life right now too.

Mayo Clinic "the place"

The nurse came in with  Dr. Freeman  asks my name, birth date and asks "what are we doing for you today?" ha, umm for me or to me? without hesitation I reply "hurting me to take away my pain" how weird is that statement?  They both, not knowing how to respond say "where are we going to hurt you today" laughter "in my hip and lower back" He gives me trigger spot shots, and when he does he jiggles the needle around to make sure he gets the entire area around where the initial pain is.  Every time he does that I want to come off the table, he always says "almost done, I'm sorry it hurts"  I have not seem him since my surgery in at Mayo Clinic in the Spring, we were able to have a good private conversation about how I'm really doing.  That one is so hard to talk about, I'm not sure how I am doing, in comparison to what?

Recovery, drinking my daily routine

I have been staying really busy, working at US Airways, I have the best management and supervisor I could ask for, they really care.  Also, working on being Happy, trying to deal privately with, if my face has to stay the way it is right now, am I going to be OK with that? I don't expect anyone to understand how I feel, but at times I am lonely in THAT world. I have researched partial facial paralysis, gone to the library, online and trying to reach out to anyone who has suffered or is dealing now with this--NOTHING--I guess I understand a little more about what Dr. Barr's was talking about when he said this is rare for a nerve to just die, with no apparent reason.  This is not like having a stroke or Bell's Palsy where the nerve is damaged,  and WILL eventually snap back, this is a dead nerve, which means it will not live again, or regenerate.

This is what a dead nerve looks like--and it's mine.

Going to Cleveland Clinic to see Dr. Gastman was to take a live nerve from my ankle and replace the dead nerve in my head with a good nerve, hoping it will grow together with the nerves on either side.  IF this works,  we will not see any results for a year, and I will maybe get 30% of facial movement back.  If it does not work, they want to cut along my hairline pull my face back and take nerve from my left side of my head and connect it with the one on the right, then wait another year.   I'm not sure I want to go through that again.  Going back and forth to Cleveland Clinic is difficult for me, not getting results or answers is frustrating, wanting to say "WHY" is realistic on some day's.

Getting to hear for the 1st time in 48 years was fantastic, I heard things I'd never heard before, sounds most people I know take for granted.  That first night coming home was one of the most spiritual experiences I've ever had, without a doubt the Lord was smiling down on me along with Colby.  What I wasn't prepared for was going to work the next day, ready to share my new exciting news was quickly turned to sadness.  Actually hearing what people say about me, it hurt, none of them were saying it to hurt me in fact none of them know I could hear it,  and they all were saying it out of love for me--still the sting of truth hurts. Going to the store, watching people quickly look away when we make eye contact I've been able to get used to, but now hearing opinions I am the one looking down and away before eye contact is made. I thought I was going to make new connections and share in the beauty of small sounds, be able to give the gift of not taking for granted, the sound of a pen writing on a piece of paper, or the clicking of the keys on the keyboard as we making reservations, the fact that I could for the first time be able to turn the phone volume down. Instead what I heard was "I feel so sorry for her" "She is so strong" "Have you ever read her blog?" "I don' think her face is ever going to be the same"  "She used to have such a beautiful smile" tears ran down my cheeks as I sat and heard these words coming from I'm not sure who, as I am still trying to distinguish where sounds are coming from.  We have cubicles where we sit,  I quickly wiped my tears so no one could see, and took my BAJA off.  I haven't worn it since that day to work.

So proud of Mayo Clinic, this Cancer Center has been in the
works for year's, it's getting done, they will have a proton
radiation beam, the only one in the Western part of the
nation.  Proton beams are used to radiate certain cancer's and
can pinpoint to  99.9% . 

I am the one who get's to decide what my destiny is, what my life will be and who I decide to share my light with.  I love my co workers, I love my family and friends, but I need to be OK with 'me'.
I will decide where I end up, I'm doing what I can to figure all that out, and until I do I can't wear the BAJA.  I pick and choose,  and I'm taking it slow, because sitting in this moment right now, I'm feeling things I've never felt before.  My heart has never beat so hard in my chest than it has in the times when I've been wearing the BAJA.  I feel blessed to know, the people around me are sincerely my friends, they are kind and loving, at least nothing bad was said--just the truth--the truth I was not prepared to hear.  Reality is, I need to work on me, on my confidence, get rid of the negative and concentrate on the positive.  There's a fire in me that I can never deny, I know He lives and He loves me.  It is my faith and my hope over the years that has given me such peace, given me strength to endure and enjoy the sweetness of life.  However, I've tasted the truth and my heart will never be the same. That is not necessarily a bad thing, maybe I needed a taste of reality.  It's just going to take some time to process what it is He wants me to learn.

Off of my balcony in my bedroom, the moon
is beautiful tonight, this picture does
not do justice.  It is HUGE, YELLOW and
GOEGEOUS

I will wear the BAJA on the Sunday before Thanksgiving, to hear Stephen Phelps and the choir sing Come thou Font of every Blessing.  I have so much to be grateful and have been blessed with a good life---music touches my soul and helps me to heal.  It's just a longer process this time.

Halloween 2014

Recker Loves Papa and Pizza

Brian and Kaitlyn--Old Couple--She's pregnant
How'd that happen?

Brad and Betty Walmart Greeters
Haleigh & Scott

Ezra the Lion