Friday, November 28, 2014

Brain Scan at Mayo Clinic

 

FRIDAY, NOVEMBER 28, 2014

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 every day ... I am so sorry. It was stop-and-go the entire way to Mayo Blvd. I will be getting brain scans every three months. All that really is is an MRI, and 45 minutes of pounding and hammering on my brain--I survived. Not my favorite thing to do, but necessary for Dr. Barrs 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 prepare me for the scan. Included in the visit is an IV. I warned the nurse not to use anything less than a twenty-two needle and to not use my left arm, wrist, or hand. She smiled and assured 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, and 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 have 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. I said, "Lindsay, right?" she hugged 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." She said, "I was your nurse on the fifth 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 me see if I can get a smaller needle and use the other hand." The previous nurse disappeared, and Lindsay finished. What a great surprise; I love running into the great staff who have served me over the years.

I love Mayo Clinic because they always have my results on the same day. I ate lunch, then met with Dr. Barrs. He is excellent; he always has a big smile and a sweet, compassionate heart. The brain scan results looked good, the cholesteatoma has no regrowth, and there was a little liquid build-up, but nothing for me to worry about. Dr. Barrs talked to me about facial paralysis; he wanted to know how I dealt 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 and 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 a big smile and acknowledged that what I felt was expected but that he loved who I was my personality, and my heart. 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 finish all the other surgeries at Mayo Clinic.

Saturday, November 15, 2014

Trusting

 

SATURDAY, NOVEMBER 15, 2014

Trusting

The worst pain a mother can feel is knowing her children are struggling with something you cannot understand or comfort them.
There have been times when my doubt has been as vast 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 gorgeous boys. Recker is almost 5 years old. It's so hard to believe how fast he is growing.  Ezra will be two in February. He's been a spunky, smiley fun baby boy.  These little angels have brought me more joy than I ever thought imaginable.  Their laughter and unconditional love are 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 five 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 not have 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 fine. He was making animal noises, something Recker never did. He could point to the various parts of his body. Again, I don't remember Recker doing that. Over the past few months, Ezra has started to regress. Although Kayla tried her most demanding to prepare us, it could be true. I just didn't want to believe it. Ezra was doing everything differently until he didn't; gradually, he became distant.

Kayla did everything differently with her pregnancy, thinking it might be different. Ezra didn't get his shots like Recker did. She did everything differently--Now we know, his diagnosis is a shock to Eric and me, 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 extraordinary 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 will take a few days, weeks, or months to get used to.  I just want Kayla and Jeremy's dreams of having a typical child to come true. This does not mean they do not love their boys. They love them more than life, but not hearing your child say "mom or dad" is heartbreaking.  They need time to mourn. We all do.

I don't in any way, shape, or form believe these boys are doomed and will not have a future that is anything less than we, as a family, teach them. I know they can and will be, such a blessing to our family and others. In fact, through their journey, they will be the ones who, against the odds, will teach us. Through their sweet spirits, they will guide 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 sends those sweet boys to our family for a purpose.  We may never know what that purpose is but we have decided the reason does not matter as much as making the journey with them memorable and happy.  Autism is not fun. It is misunderstood.  I know so little about why a child is diagnosed with Autism. All I really know is that nothing has changed for me. I love them unconditionally; I will take them by the hand as they lead me and guide me back to where I want to be ... HEAVEN.

Monday, November 10, 2014

Dr. and Mrs. Peter Kreymerman is a DADDY

 

SATURDAY, OCTOBER 3, 2015

Dr.Peter Kreymerman is a DADDY

I drove to Mayo this morning to see Dr. Peter Kreymerman, so looking forward to him telling me I could pick up Recker now and that I could get rid of the BRA ... Instead, I was shocked when a different doctor walked in, mostly because he looked like he was 12 years old ... just kidding I think more like 21 ... maybe!

Dr. Peter Kreymerman and his wife had a baby girl on Friday, November 5th at 4:59 p.m. I'm not sure if I can post her name but she is a healthy 6 lbs. 3 oz. baby girl. I got an email from Heather his assistant, and she sent pictures, however, I would never post pictures without permission from Dr. Kreymerman, but I can tell you that she is beautiful, with lots of dark hair dressed in pink. I am quite certain they are not getting much sleep, but that the baby is getting lots of love and attention. There is nothing like having a brand-new baby. They always bring such a sweet spirit to the home. Congratulations Dr. and Mrs. Kreymerman

Thursday, November 6, 2014

The truth stings

 

THURSDAY, NOVEMBER 6, 2014

The truth stings

 I immediately looked to my left when I walked into Mayo Clinic hospital today. This is where I watched a woman die while the paramedics tried to save her. I remember being jealous, and I wished it had been me. So much has happened since then, I'm not afraid to die, but right now, I'm enjoying my family.

Mayo Clinic "the place."
The nurse came in with Dr. Freeman, asked my name and birth date, and said, "what are we doing for you today?" I replied, "hurting me to take away my pain?" How weird is that statement? They both, not knowing how to respond, said, "where are we going to hurt you today?" laughter "In my hip and lower back" He gives me trigger 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. Dr. Freeman says, "Almost done; I'm sorry it hurts." I haven't seen him since my surgery in the Spring. 
Recovery, drinking my daily routine
I have been staying busy, working at US Airways; I have the best management and supervisor I could request. They really care. I'm working on being Happy, trying to deal privately with it; if my face must stay the way it is right now, will I be OK with that? I don't expect anyone to understand my feelings, but I am sometimes lonely in THAT world. I have researched partial facial paralysis, gone to the library online, and tried to reach out to anyone who has suffered or is dealing now with this--NOTHING--But I understand a little more about what Dr. Barrs 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 Bells 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 nerve from my ankle and replace the dead nerve in my head with a good nerve, hoping it would grow together with the nerves on either side. If this works, we will not see any results for a year, and I will get 30% of the facial movement back. If it does not work, they want to cut along my hairline, pull my face before, take the nerve from the left side of my head, connect it with the one on the right, then wait another year. I don't want to go through that again. Going back and forth to Cleveland Clinic is difficult for me; not getting results or answers is frustrating and want to say "WHY" is sometimes realistic.

Hearing for the first time in 48 years was fantastic; I heard things I'd never heard. Sounds like most people I know take it 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 exciting news, which quickly turned to sadness. Hearing what people say about me hurt me; I knew they would not intentionally hurt me. In fact, none of them knew I could listen to it, and they all were saying it out of love for me--still, the sting of truth hurts. I've been able to get used to going to the store and watching people quickly look away when we make eye contact, 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," and "Have you ever read her blog?" "I don't think her face is ever going to be the same" "She used to have such a beautiful smile" tear 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 to work since that day. 
So proud of Mayo Clinic, this Cancer Center has been in the
works for years, 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 cancers and
can pinpoint to 99.9%  
I am the one who gets to decide what my destiny is, what my life will be, and who I choose to share my light with. I love my coworkers, family, and friends, but I must 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'm taking it slow because, sitting right now, I'm feeling things I've never felt before. My heart has never beat as hard in my chest as when wearing the BAJA. I feel blessed to know the people around me are my friends; they are kind and loving; at least nothing wrong was said--just the truth--the truth I was unprepared to hear. I need to work on myself and my confidence, eliminate 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. My faith and hope over the years have given me the peace and 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 sad thing. I needed a taste of reality. It will take some time to process what He wants me to learn.
The moon is beautiful tonight from my balcony in my bedroom; this picture does
not do justice. It is HUGE, YELLOW and
GORGEOUS
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 for and have been blessed with a good life---music touches my soul and helps me to heal. It's just a more protracted process this time.

Saturday, November 1, 2014

Halloween 2014

 

SATURDAY, NOVEMBER 1, 2014

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

Posts

Year Two: The Ache That Lingers

Eric Everyone told me it would get easier with time. But here I am—deep in the second year—and it hurts even more than ever. The world expe...