Surgery with Doctor Lettieri

 

SATURDAY, DECEMBER 12, 2015

Surgery with Doctor Lettieri

 It's been challenging to blog about current events. I've signed a book deal. However, I am going to keep up my blog. Soon, it will have the logo from my book. I will also have a FB page for caregivers, survivors, or anyone wanting to know how to comfort a friend, family member, or loved one during and after cancer has been diagnosed.

I entered the Mayo Clinic Hospital early on December 2, 2015. The last surgery I had with Dr. Lettieri was successful. He took a nerve from my leg and masterfully entered behind my left ear through the left side of my face under my lip. We were told if the surgery was a success, we would feel it grow one inch per month. It has done just that, and now it is time to finish the job. This is a very tedious surgery; finding a viable nerve from the right side of my face will take a few hours.

When I woke up in recovery, it was a little scary for Eric--not sure if I was having a stroke or reaction to medicine--either way, I dry heaved for over 24 hours. Did you know dry heaving hurts?

After neurology was quickly called to the rescue, I had CT-PT-MRI and brain scans--no sign of stroke--however, since I was still in much pain and dry heaving, I was kept for longer than expected.
My surgeon, Dr. Lettieri, is in Italy...What the Heck? Do Doctors get vacations?

I needed to go to the Mayo Clinic since the surgery sight was bleeding. I was temporarily fixed but will see another Surgeon when Dr. Lettieri returns. (Monday) Nothing was wrong with the surgeon I could see, but my ultimate choice is Dr. Lettieri--FOREVER- I made the mistake of going to Cleveland Clinic on a suggestion --HUGE MISTAKE -- I will never do that again.

While working on the nerve in my face, Dr. Lettieri had no choice but to try and work around my paraded gland. I know this gland and the damage that can happen if I don't get it fixed, but I am not seeing anyone else but Dr. Lettieri. The gland, for those of you who don't know, is the gland where your saliva generates. This gland was compromised, and my face has backed up blood, either running down my throat or out of my incision. We cannot keep it controlled with our own packing.

I'm looking forward to seeing Dr. Lettieri next week with more updates.

Dr. Sal Lettieri Eye Surgery

 

WEDNESDAY, JUNE 24, 2015

Dr. Sal Lettieri's Eye Surgery

Tomorrow morning, I will enter Mayo Clinic Hospital for my 26th surgery. I'm having a lot of anxiety about this upcoming operation. I forced it so far into the back of my head, knowing we were going on a family vacation; suddenly, it hit me on the plane ride home. I'm not sure if it's because I realize what recovery will be like or if I am just so done with all this silly nonsense--it's like Groundhog Day, repeatedly.

I cannot wear my cochlear device. It is an excruciatingly painful ringing in my head and gives me terrible migraines and dizziness. However, I've lost most of my hearing in the left ear (the good one). I can't hear my alarm go off in the morning (usually, I can listen to that thing rings throughout my home's walls). I can't hear music, people talking, everyday things I have taken for granted. Although it is annoying, I will have to wait until after this surgery tomorrow with Dr. Lettieri. Hopefully, he will be taking the gold weight out of my eyelid placed in at the Cleveland Clinic (wrong size) and being upgraded to Platinum--I like to consider it an upgrade--GOLD to PLATINUM--, and I think I will save the Gold Weight--let's just see what Dr. Lettieri thinks about that......I paid for it, so why not take it home? That's the easy part; the more in-depth portion of the eye surgery is to fix the chronic dry eye--I didn't want to know the details about how that is done; Dr. Lettieri likes me to be informed of procedures--I frankly don't care or understand all that doctor jargon, so I told him "I trust you, just do it" I love and do trust him, I am in good hands tomorrow. Heather will be scrubbing in, too.... bonus for me; I love that girl.

Time to get to bed now. I have 5 hours before it's time to check in.

The Price of Beauty

FRIDAY, MAY 1, 2015

The Price of Beauty

I was recently at a training in Canada, as I religiously took notes I suddenly was struck with shock when I heard Mark (the trainer) tell a story about how much women pay for their beauty products.  I heard laughing from the audience, but I was in another world.  I was having an outer body experience. What is the price we pay for beauty?  I'm not talking about a monetary price, as Mark was humorously entertaining us with.
I had an ah ha moment, I wrote: Mark said, "believe me guys, there is a price for beauty...."
I immediately wrote down "For me, what I have learned about beauty from Nerium this past year is Priceless" My face is disfigured, it will never be the same.  I want that so badly, I want to look at someone and smile, smile BIG.  I want to show my teeth.  I can't believe I took my smile for granted.  Just like I took my hair for granted, the feeling in breasts for granted, being able to run and train for granted, I could go on and on..... I simply took everything in life for granted.
I cannot honestly say any of this is understandable, nor has it been easy.  I may not always please people with my honesty and truthfulness, however I know the Lord has gotten me through these past few years.  I have been refined, not defined by Him who loves me just as I am.  In my quiet time, when I spend thinking and pondering over why so much in my life has been hard there have been times I've truly wanted to crawl in a hole and die--I've wondered if anyone would even miss me, lost sometimes in despair.
Then suddenly my heart is filled with more love and an overwhelming feeling of His arms around me, pulling me up through that dark and empty hole into the light again.
I lived for so long not caring about others, not caring even about where I was going or where I should be.  I now know my life was intentionally and most humbly prepared for me before I even came to earth.  His grace has gotten me through enormously unbelievable circumstances.  Because I know He has made promises to me if I am righteous and obedient I will continue trying to live as He wants me to.  I will share Hope and Faith with others, I know the Lord will use me, he will lead and guide me to people who are in need.  This life for me is no longer about beauty on the outside, I ask Him to help me not turn from pain and to give me strength and compassion to help others who are climbing an uphill battle.
We all want to feel beautiful, external beauty, I know this because I have been that person.  There are still glimpses I take in the mirror that horrify me.  When I am weak, I know I have to move forward, never go back, never give up.  I am putting all my faith in unseen strong hands that I have felt comfort me and pull me to a higher ground.  I love that feeling, knowing He is watching over me, He knows me, He feels my pain and He understands my journey on this earth is not quite over.
Physically I am tired, my body aches my heart is full and yet I want to fight because I know there are so many more miracles to come to others from Him through me.  I don't feel comfortable sharing those sacred moments the Lord has so gracefully revealed to me I have more work to do before it is my time to go live with Him again.  He has lifted my burdens on so many occasions when I have wanted to give up.  When Sheldon died, one of those special moments came.  I truly miss him, and visit his graveside often. I'm not sure why, I haven't visited anyone's grave as much as his but I feel a peace there. I will never forget him telling me I looked beautiful when I was bald.  Eric tells me I'm beautiful everyday, he is so kind in that way and I appreciate it so much, but the day Sheldon said those words to me, it meant something different.  He stood there pale faced and bald himself and yet for some reason those words penetrated my heart like no one else ever has. Maybe because I trusted he knew how I was feeling, not just using "words" to succor the needy.
Every bit of the worlds definition of physical beauty has been taken from me.  So yes, there is a price to pay for physical beauty, but for me what I have learned about pure unconditional love and beauty in His eyes is priceless.

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DUMP IT

 

THURSDAY, FEBRUARY 5, 2015

Dump It

 I’ve kept my mind preoccupied for the past couple of weeks. Instead of worrying about my surgery tomorrow, nothing I do keeps my mind off my mental pain.

I’ve been in situations where I feel like everything is against me. I know so many of us go through times when we are out of options and don’t know where to turn. I try to remember that anytime I don’t see a way out, God will repeatedly make a clear and precise way. I often try to find confidence in Him, remembering He has made promises. I’ve accepted that he will not take it away, so there is no way out but a way through.

I’ve been studying different stories in the bible about people who felt there was no hope but found out differently by having. In Genesis, there was a time when Moses led the children of Israel out of slavery and headed to the Promised Land. They didn’t get far before being close to their enemies, who wanted to enslave them again. They finally found themselves at the edge of the Red Sea, and it looked like there was no hope—but God! They cried to the Lord, and in Exodus 14:1,3, Moses said, “Fear not; stand still and see the salvation of the Lord which He will work for you today.” Then Moses stretched out his hand, and the Lord caused a great wind to part the water so the people could move forward on dry land. But that’s not all! When the enemy army tried to cross the sea behind them, the water enveloped and destroyed them. The Israelites were finally free. 

I serve a Heavenly Father who wants to be the hero of my story! He is a God of miracles! He loves to show Himself strong on behalf of the people who seek after Him. I keep standing and believing because I know Heavenly Father will move me through difficult situations so I can take hold and believe in miracles again. It’s not always easy to do; I am human.

“The Lord will fight for you, and you shall hold your peace.” (Exodus 14:14)

It says in 1 Peter 2:9, “You have been chosen by God Himself.” There have been times when I’ve felt left out. I’ve been disregarded by people who have overlooked me. But now I always remember the One who matters most chooses me. I was not randomly chosen. God, on purpose, looked at me and said, “I chose her. She's my daughter. That’s who I want on My team.”

In my youth, I was told, “You’re just too tall or too skinny,” But God said, “You’re just the right size for Me.” I have felt or been made to feel, “You’re not talented. We don’t need you. You don’t have anything to offer.” But each time, Heavenly Father said, “You are fearfully and wonderfully made. You are talented. You are creative. You are anointed. You are smart. You are intelligent. You are amazing.” This has taken me a lifetime to understand. Those aches were real, but I can see the hand of God in my life by tracing back over those steps. I’m unsure why we hold on to the past so tightly. Driving home from the Mayo Clinic, feeling a little sorry for myself, I pulled into a Land Fill (weird, never been there before--it stinks.)

I parked, poured my heart out to the Lord, and dumped everything holding me back.

Dumped my fears today...

Looks like a lot of people dump here.

I know so many who have gone through more than their share of unfair situations. But here’s what I’ve learned. Even though life is not fair, God is fair. If we do not think something is wrong with us but instead start seeing ourselves as handpicked by God — valuable, lovable, with something great to offer, Heavenly Father says He will pay us back double. That means He’ll make the rest of our life twice as good as it would have been if that situation had never happened.

It’s time for me to dig my heels in. Not allowing what somebody did or didn’t do to steal my joy and cause me to go through life feeling not good enough, not talented, and not attractive. No, it’s time for me to realize I am a child of God. My value doesn’t come from people or accomplishments but from Him. I need to put my shoulders back. Hold my head up high. Live with confidence. God said He would take what was meant for harm and use it for my advantage. 

I’m trying to keep this attitude of faith, praying Heavenly Father will always give me the last laugh. I believe he’s trying hard to get me where I’m supposed to be. I may never run that marathon I’ve dreamed of, but God has something else for me to do. Heavenly Father has opened doors for me. A year ago, I thought I was on the road to recovery, complete healing. I soon found out the Lord had another mission for me to full fill. With all my heart, my Heavenly Father is bringing light into my life for a new journey and peace. The person I am becoming is so much bigger than any monetary means. Because my Heavenly Father knows me so well, he knew I would have difficulty looking in the mirror and liking who I saw staring back. In fact, He knows this will take years of aching, crying, and suffering before I will be ok with that image in the mirror. The knowledge I have learned is this, He never gives up on any of us.

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A Dose of Reality or Just Plain Rude?

 

WEDNESDAY, DECEMBER 31, 2014

A Dose of Reality or Just Plain Rude?

Today I received a dose of reality, well I think it was a reality I have a tough time distinguishing between reality and rudeness these days. I am trying my hardest to be OK with living with a disfigured odd-looking face, potentially for the rest of my life.

 I have good days and bad. In my face, directly confronted with these words today "Hey Monya, I'm sorry to hear about your recent surgery" "Thank you, but I am doing well, and glad to be back to work" "....uhh I was just wondering, do you think you could get plastic surgery on your other eye to create some symmetrical lines?" Seriously, being put on the spot like that was about as uncomfortable as being drunk in church.  I had no idea what to say, after a little hesitation my response was "... I would not, actually I WILL not have elective surgery, which was my 21st surgery in 5 years, I've had five this year, and thought I would lose my life.  I honestly do not care about what my face looks like anymore" "Well you take good care of your skin, it looks good. Except for the right side is a little off-centered from the rest........" interjecting I couldn't help myself "I have to stop you right there, I can't listen to this anymore, I am not trying to be rude, and I'm quite sure you have great intentions and that you are not meaning to insult me, but this has been one of the most difficult years of my life. The fact that I am alive, back to work, and trying my best to be OK with myself; not the physical me but who I am. The parts of inner beauty I have never seen or known I could possess has been a long ongoing process." The tears started to well up, which really ticked me off because I was trying so hard to stay composed. ...Since the facial paralysis, I have cried myself to sleep more nights than I care to share. I'm working hard at Living Happy and by giving myself daily affirmations that I am good enough, that I am pretty enough, and that I can hold my head high knowing I am trying my hardest with all I have inside of me to face people and respect myself, no matter what my physical appearance is" she considered what had just been said and apologized for offending me. Why couldn't it just end at that? Oh no ... I started to walk off and she uttered "I just thought you would want to know, there are plastic surgeons out there who can help you."

I walked off acting as if I didn't hear her last comment.  I wish I could say a huge shield of honor came up between her and me but, as much as I didn't want this to affect me, it did.  When I got off work, I went home and looked at my face in the mirror, and like I do every day I told my damn lips to smile, I worked it for 30 minutes-- it was funny--my dang mouth didn't even try--I had to push my lip up repeatedly.  I did that, saying "Smile dang it ..."  Well guess what? I can only smile with one side of my mouth, and I can only lift one eyebrow, but I can listen with my heart even with a deaf ear, and I can smile with my eyes.  So, until, and if my smile never comes back, I will continue to work on true happiness in my life, surround myself with others who are authentically compassionate and kind, and tomorrow I will try again.

I'm Trying ...

 

I'm trying...

I have missed a few blog posts so today I will post three.  First, I went to Cleveland Clinic, had my surgery with Doctor Gustman, then flew home with Eric to recover.  I'm getting good at this.  I do not like the pain medicine, Eric gets upset if I don't take it, but I try to muddle my way through without using it.

I received an email message from one of my physicians who reads this blog, so this is for him... "You made a mistake on your blog, which was your 21st surgery in less than 5 years" "Well excuse me for the miss count, btw your nosey" "No, just want you to be exact" So there you have it, yes, I have nosey physicians.  It's a good thing I love him enough to care that he was kind enough to correct me and that I never say anything on this blog I wouldn't be proud for them to read.

I want to add this little tender mercy to this blog post because it is another one that truly took me by surprise.  I have been involved with a company I feel the Lord placed in my lap a year ago for a reason, He knows how much each of us can handle, and knowing what was about to make a life-altering change to my life, He knew I needed to be with people and circumstances that could bless my life, and it has in such a precious way.  I have made lifelong friends, who never knew me before my paralysis or cancer diagnosis.  Most don't know my story.

I recently was invited to listen to a conference call by a woman who I had already admired, for her down-to-earth, funny, humble way of telling the story of how she and her sweet husband have gotten to where they are today.  Like always I was sitting on my bed with my phone in conference mode with my notepad ready to take notes and learn something that may also help me in my venture.  I was not prepared for the emotion I would feel when I listened in.  So many who have followed my story know I use the word HOPE so much, I have studied it, pondered it, lived it, and tried to wrap myself up in the warmth of that word.  Mariel began to speak with her team, (everyone on the call is muted) that's a good thing because it was not a minute or two into the call when I began to blubber like a baby.  It was as if she was speaking to me directly. (This is not the case she had about eight hundred people on that call) I am not going to go into all my notes, mostly because I stopped taking them at this point.  She was directly delivering her message to me.  Gracefully and gently, she spoke of HOPE.  Giving HOPE to others during a time in life when so many just need to know there are people in the world who care, and who want to help make a difference. It's been 6 months that I have dedicated myself to doing something kind for someone every single day, I have been successful in doing this, and it has changed my life. It doesn't take away my own needs and realities, but it has helped me to become a better person and to learn that when I fall, I can be lifted and reminded of my potential.  I've been reminded once again time after time as I'm guided to people daily that I have so much to work on, so much to learn but by taking the hand of others like Mariel and Frank I can be led and guided with thoughts of goodness and mercy and do it with humility and grace.

I had a few days off for recovery after surgery but started back to work last week.  I love my job at USAirways.  I really had a breakthrough last week while working.  Not the place I thought this would happen, but anymore I am never surprised at what, where, or who touches my life in a significant way.

I was taking a reservation for a man, just doing my job when out of nowhere he asked me if I was OK.  Not knowing exactly what he meant I asked, "Yes I'm OK, does it seem I am not doing my job, or have I offended you?" "Oh heavens no, just the opposite you are lovely to talk to, and today I feel grateful it was you who answered the phone" A little stunned I thanked him and finished up his reservation, when I asked if there was anything else I could do to help him he said "Yes, you can" thinking he was going to either change the reservation, have me send him to rental cars or add his dividend miles number, you can imagine my surprise when this is what he said "Did you recently have a stroke? I don't mean to be nosey but your voice sounds a little staggered" for the first time I was finally able to hear the truth from someone, a stranger and for the 1st time a light went off in my head I replied "No sir, I didn't have a stroke but I do have partial facial paralysis and sometimes it is difficult to speak clearly, I'm sorry if you had a hard time with me today" I felt this sweet peace come over me, I am healing, from the inside out.

Facial paralysis has been by far the most challenging misfortunate obstacle I have had to come to grips with.  I've felt so many times that I just can't do this anymore, begging for relief, for complete physical healing.  I have felt broken, alone, and misunderstood. To finally say aloud to a perfect stranger "I have partial facial paralysis" may seem so insignificant to other people, but for me it was HUGE.  My physicians have been perfectly honest with me.  Right now, there is not much hope for a full recovery without more surgery, which I was told from the beginning.  I like to think I want to hear the full truth, the bottom line, then I can deal with it.  Boy, was I surprised at how much I didn't comprehend my own understanding of what difficulty was?

I have so many people say "...but you're beautiful" for some reason that ".... but" hesitation has penetrated my heart too many times.  I know there is not one person out there that has said those words to me who is comfortable saying it, but I've come to discern they love me and just don't know what to say, and that is OK, I don't know what to say either.  The absolute truth is, my soul, is trying to heal, and it will take some time for me to be ready to accept this new life I have been offered.

Blessed Abundantly

 

THURSDAY, DECEMBER 11, 2014

Blessed Abundantly

Well, I made it to Cleveland Clinic. Rather than dwell on what was coming up, I focused on more positive thoughts. If you do not have a LIVE HAPPY magazine, I am a Live Happy ambassador and would love to get you one; please send me your address; it costs you nothing, but it will enhance your life tremendously; I love it.

I had a day filled with tests and pre-op appointments. It is freezing here in Cleveland, not what this Arizona girl is used to. Eric flew in last night to be with me for the surgery; I reassured my surgeon I was flying home on Saturday; his PA was a little shocked at my boldness, but I needed to be with my family. One remarkable thing is that I am flying in 1st class, drugged up, and hopefully feel no pain.

So many struggles privately; I would be one of them. However, I don't have that pleasure; my obvious insecurity and self-doubt have been public but have helped me develop in ways I arrogantly didn't think I needed. To those who struggle anxiously and quietly, please know I pray for you daily--it's the least I can do, and I HOPE for some relief from your pain.

Life is so full of difficulties; no one is perfect, and no situation is always ideal, but for me, right now, I am doing all I can to become OK with who I am, what I physically look like to others, and work on my worth as a person, not an object. I love who I am becoming and realize I have much more to work on. The beauty of this life is that we get to start all over again tomorrow with a renewed perspective--and if we don't make it to tomorrow--guess what? There's still HOPE--He will pick up the pieces and carry us through to our new journey.

We all need someone to talk to, someone who really understands. For parts of my life, Sonya and Kris have been my people. Eric, my eternal partner, understands and helps me to achieve my goals with ambition and constant encouragement. Amazingly my little Recker looks into my eyes at times, and I know he realizes and senses my solitude. Yes, I am blessed in abundance.

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.