The skinny on skinny

Me and Taryn, dinner before the show.

The truth is skinny does not equal happiness or health.  I am the thinest I've been since my twenties, I'm also the most unhealthy I have ever been.  I know friends who with age have gained weight--it happens but they are healthy--they run, cycle and eat well balanced meals--they are beautiful.

I was recently asked to be on a Q and A panel immediately following the documentary called Embrace.  Taryn Brumfitt did incredible research on the subject of body image. She interviewed some pretty amazing people.  One common thread that most of them had was they never learned how to love themselves, or their body.  I too struggled with body image as a teenager, I was too skinny and 'boobless.' (more about that in my book I CAN-cer vive)  Some people are pre-disposed because of their genes to be thin or heavy.  It's not the 'fatty's' against the 'skinny's' we are all a part of the human race and deserve love and laughter.

What if I were to say "I wish I wasn't so thin? or I wish I could gain weight?" If you are honest most people would say or think "I wish I had that problem." I know this to be true because I have heard people say it to me.  Be careful with your words, what may be an acceptable weight for yourself may not be a healthy weight for another.  When as a youth I heard friends say "You are so skinny!" It hurt, those words were as hard for me to hear as someone saying to another person "You are so fat!" I tried hard to gain weight and never quite accomplished my goal. When I graduated from high school I was 5' 9" and weighed only 96 pounds--that my friends is not healthy!!

When I speak to youth about body image it's interesting to open up for Q and A--most hesitate to ask questions knowing their peers are surrounding them and what they have to contribute may not be acceptable.  The few moments of silence tells me they all are squirming in their seats because the thought of talking about their body is embarrassing--

I usually break the ice by asking this question, "If you could change anything about your physical body what would it be?" I laugh and say "I'd change my smile I loved my smile before my paralysis" When the dialogue begins it is magical to hear--most of our youth are not happy with something, usually I hear them talk about their weight, or things they were born with--like a not so perfect nose or believe it or not their feet or toes.  I love that one.  I remember a very handsome kid in high school who determined the girls he would date by looking at their toes--he needed the perfect shape- no toes were allowed to be taller than another--Say whaaaat? Seriously, toes? You may be wondering why I find this conversation magical--let me explain.  When our youth collectively come together and are able to say out loud "I don't like___about myself"  It gives everyone in the room a safe environment to talk about these issues, the youth usually walk away realizing they are not alone, but more importantly they are not perfect, imperfections are what make them unique. For some of them it is the beginning of embracing who they are and the endless possibilities they have to make a difference in our world.

When I was diagnosed with permanent facial paralysis, it was devastating.  I went into a deep depression wondering how I would fit in, I still have moments of doubt but now I've learned how to harness that silly thinking by allowing myself a few minutes to mourn then looking myself in the mirror and telling myself I am uniquely beautiful from the inside out.  Another healing thing I did was write a letter to myself, I scribbled down a few things I needed to let go of and let be. Those unimportant things that were serving no good purpose to my life are now a part of my past not my future, then I burned the paper.

This sweet lady is featured in the documentary Embrace. I was privileged to meet and talk to her. She has facial paralysis, obviously not as pronounced as mine but just as real.  This was a moment I never thought I would have.  Permanent paralysis from a nerve dying only effects 2% of people. Jade had a benign brain tumor that caused hers. I have to admit I teared up talking to someone who knows exactly what I am feeling--the messy eating--and the frozen eyebrow were just a few things we talked about coming to the conclusion we are imperfectly perfect

So, I've asked myself plenty of times over the past couple of years "How can I make this a positive experience? How can I endure and be blissfully happy with a disfigured face? Who will I allow in MY circle of trust and friendship?"  I cannot change the world, but I can create a ripple effect by speaking out, embracing other's and being inclusive.

**Just a side note and after thought, our youth need to understand they are beautiful they way they are, but they also need to know this is not an excuse to feed their insecurities with food, we are a nation of obese people--this too needs to stop and is not healthy. Childhood obesity is on the rise, as parents we need to teach them a healthy balance of all natural foods--and guess what? It's ok to eat dessert first, once in awhile.

Imagine

In my opinion one of the most powerful words in the English language is Imagine; this single word gives hope to a world that is in so much turmoil. 

Of all the songs John Lennon wrote and performed, many of which have had tremendous impact on our culture, “Imagine” has the one I most resonate with. While its influence reaches across the globe, there are physical representations of it in the two places that most represented home to Lennon. The Liverpool Airport, renamed the Liverpool John Lennon Airport, has the line “above us only sky” painted on the roof. Yoko's monument to her husband, in the Strawberry Fields section of Central Park, is a mosaic of the word Imagine, where fans gather to mourn him as well as to celebrate his legacy. 

Imagine there's no heaven
It's easy if you try
No hell below us
Above us only sky
Imagine all the people
Living for today... Aha-ah...

Imagine there's no countries
It isn't hard to do
Nothing to kill or die for
And no religion, too
Imagine all the people
Living life in peace... You...

You may say I'm a dreamer
But I'm not the only one
I hope someday you'll join us
And the world will be as one

Imagine no possessions
I wonder if you can
No need for greed or hunger
A brotherhood of man
Imagine all the people
Sharing all the world... You...

You may say I'm a dreamer
But I'm not the only one
I hope someday you'll join us
And the world will live as one

                                                 

These words were sung by a somewhat complicated man, in 1971 I didn't realize how inspiring these words could be. Now, as we fight and are at war with the world over religious beliefs and pride I can see that Lennon had great insight and wisdom to write and sing these words.  Even today I am teary eyed when I hear this song.  I love the hope it gives us.

7 years ago this month I was diagnosed with breast cancer, it has been a wild ride since that day I heard the words "you have breast cancer."  I am blessed to still be alive and so many other health issues have come since then.  I've learned to hear a diagnosis of breast cancer is not a death sentence to all and for me the words that crashed my world were "your face will never be the same again." I took my smile for granted, I will never smile the same again, I still have no feeling in the right side of my face I have chronic dry eye and am in constant pain even with the weight Dr. Lettieri placed in my eyelid I still have trouble seeing. Expressions that come so natural for other people I took for granted; like raising your eyebrows being able to eat without my eye blinking is impossible; I rarely eat in public places. I am recognized by my new look. Interesting enough I have always been self conscious about my looks and certainly never felt beautiful. Trying to embrace who I am and who I represent in life has been and is an ongoing struggle for me.  I know beauty comes from within, but trying to look in the mirror and be ok with the woman staring back at me has also been frustrating and brought many tears.

Tonight I watched my grandson Phoenix who is only a year and a half old laugh and giggle at silly things he saw and heard.  I love and adore my children and grandchildren, with that love comes a responsibility one I don't take lightly.  I want them to be happy, not only through their innocent laughter but as they grow I wish for them to find joy in the small things,  to never take anything or anyone for granted.  I hope I can relay through my eyes and my heart their Bon Bon has had struggles in life but that I learned to embrace them, grow from them and then share how to be happy through those trials.

I, like John Lennon hope everyone, especially my grandchildren will live in the moment, I imagine them all living in peace, judging no-one along their path but instead handing them a dollar or two, and asking the Lord to bless them in their trials.  I imagine them having no greed and living true to their believes with integrity.  I wish for them to see ALL men and women as a brotherhood and sisterhood giving, sharing and helping each other. Yes, and just like he was judged as a dreamer I am judged as an optimist--dreaming and optimism are wonderful attributes to have.  As gloomy as the world seems right now we all have so much to be grateful for and as the song says Imagine all the people living as one and sharing one world. I see this happening and often times it is when I am asleep dreaming; so there you have it I'm a dreamer and an optimist.

God is Good

Today I am grateful for the good and bad experiences I've had in my life.  I've had a few friends diagnosed with breast cancer over the past few months.  Each one of them have had a lumpectomy no chemo or radiation.  While  a part of me wants to ask....why I didn't catch it sooner, the inner spirit in me says the Lord has a plan for me.  I may never know what that is, but I continue to have faith and hope for continued strength to help me through this earthly life.

Today as I scrolled through Face Book reading updates on friends lives, I read one of them was told  she was CANCER FREE by her physician, I was thrilled for her, but the comments were what intrigued me. Almost everyone of the 200+ comments said God is Good.   I agree God is good, but for someone like me who has been dealing with health issues for almost 7 years now I had to question....isn't God Good to everyone?  Although I continue to do all I'm asked to do by my physicians I also continue to have heartache after heartache; my body is not cooperating.  Some people have been bold enough to say this is due to my lack of faith. I, in no way believe I'm not as good in the eyes of the Lord as these other woman are but I would be lying if I said it didn't affect me.  While I am honestly happy for these friends, I never want anyone I love to experience what I've been through I do not believe it has to do with how much faith I have.  I know without a doubt the Lord loves me and has a purpose for me here on earth. I'm trying to be the best woman I can be, trying to give unselfishly, serve others with a thankful heart....not because I think I deserve some great reward of complete healing but because I know when I serve others it makes me feel good, and in a strange way, maybe other people cannot understand it helps me feel hope for not only my future but for the future of those I serve.

Yes, God is Good he is in charge of my life, I am in charge of how I react to it.  I have chosen to not step around the fire but to run through it knowing on the other side will be safety.  The peace I feel knowing I'm ok with who I am from the inside out is becoming more and more real as the years pass and the reality sets in knowing my doctor was right....my face will never be the same again, at least not in this lifetime.  I look forward to the day when I pass over to the other side knowing my body will be perfect again like a new born I will no longer have pain.  Until that day I live each day with a smile on my heart and sincerity with my intentions.

God is good all the time, to everyone.

Love Yourself

My body is not responding well to the skin graft. I met with Doctor Lettieri this week, we both agree I will be returning for surgery #35 on June 30th. Frenchie and I needed some time together, he has been working a lot of hours and I have been dedicating a lot of time to Nerium. One of the benefits of working for an airline is being able to make last minute plans. We looked at non-stop flights from Arizona to evaluate where we could get away for a few days, away from REAL life. My least favorite place in the world to go is where the spaghetti stuck--Las Vegas.

Free forty four minute flight, we are staying at the Aria. Funny thing about coming to Las Vegas, I need quiet--it's NOT....I wanted serenity......It's anything but that......Just walking through the casino all I hear is noise, the chattering in my head reminds me of every MRI I've ever had....only it never ends. We have spent the days by the pool, or staying in our bed until three watching movies, and talking about life.

Yesterday I noticed a man in a wheelchair with only stubs from his knees down. In that moment I wondered how this happened to him, was he in the war? Did he have a medical diagnosis? Quickly my mind wondered how it would feel to never be able to walk again, to feel the sand in my toes or the green grass rub the bottom of my feet. My legs are valuable, they have taken me to places I've always wanted to go, like my happy place in Paris. Now that I have experienced the joy of riding a bike peacefully through the tree lined paths of Porte Jaune picking wild berries, stopping for a rest next to a beautiful lake with graceful swans commanding the water beneath their wings I can't imagine never being able to do those things again, they bring so much joy to me.

My legs have helped me run hundred's of miles and cycle thousands. More than the run or ride itself I have learned to appreciate, and love my legs. While on run's I have shed tears of pain, cleared my head of demons and crossed the finish line with a smile. I took my smile for granted, I believe we all take so much in our life for granted. Why do we wait until a medical diagnosis or tragedy to appreciate all that we have? This past year I have taken time to really get to know myself, I've been working on being ok with who I am and how I look. I've had to dig deep and find the potential in myself, the guidance from the spirit has helped me to overcome over whelming thoughts of desperation and loneliness.

With the diagnosis of partial facial paralysis comes a variety of issues I've never had to deal with before. Only one eyebrow lifts, only one eye freely blinks, my lip is completely paralyzed so eating is difficult. When I chew one eye blinks, food get's caught inside the right side of my mouth, and my mouth bleeds as I chew off the inside of my gums. I usually don't know it's bleeding until I either taste the blood or the napkin reminds me as I wipe my mouth. Going to the dentist to get my teeth cleaned is difficult for everyone, my mouth has to be manipulated with tools to keep the right side open and it hurts, flossing is even harder. My right eye does not blink naturally, I have a platinum piece in my eyelid to help but my eye dries out so easily and that too is painful.The truth is until each of us love ourselves, I mean truly be ok with the person we have become I don't believe we have the capacity to truly love other's unconditionally.

Whitney Houston sang a song that comes to mind the words are poignant and been extremely important to me this past year.

The Greatest Love of All

No matter what they take from me, 
they can't take away my dignity.

Because the greatest love all is happening to me, 
I found the greatest love all inside of me.
The greatest love of all is easy to achieve,
learning to love yourself it is the greatest love of all.

Showing integrity when people are watching is easy, because we want to please those around us, those who watch every move we make. I would be lying if I said I am perfectly ok with what I see in the mirror everyday...but to say I am moving in that direction by learning to love myself is a great accomplishment for me. If I could have one moment in time when I completely forget myself, my physical looks, learn to see myself the way our God see's me--I suspect I would learn in that very special moment something I already know......In His eyes I am His child, I am beautiful--It's notabout the physical beauty--my heart is BIG--I love people--I haven't always! Now that the villain and the facial paralysis have invaded my soul I've learned to look deeper than the naked eye can see when I am confronted with a person dealing with their own demons.

I'm learning to love myself for the things I CAN do and not worry right now about the things I am physically unable to do. So, I may not be able to smile or feel the right side of my face but I have my legs and feet to take me to places I've never been. I have my arms to wrap around my grandchildren and I wouldn't trade that for anything. Simply loving myself, taking time every morning or evening to write 2 things I appreciate about myself has helped me to fight off negative thoughts the world throws at me. When I stumble I made a decision to re-direct, don't beat myself up being a kind and supportive friend to someone else is important for me, however I've now learned I need to be my own best friend.

Reminding myself of benefits such as better real life results, more perseverance, higher self-esteem, more inner happiness and stillness, more positive relationships with myself and other people makes it easier to stay kind to myself through life's ups and downs.

Living in the Moment

Practicing living in the moment has been an intentional goal for my everyday living.  I have to  remind myself daily of the reward.  I've heard it takes 21 days to break a habit so I'm assuming it also takes 21 days to form a habit.
Today I will be seeing my surgeon Dr. Lettieri.  The last surgery I had on Thursday took me a little longer to recover from, purging my body of all the anesthesia is draining. Getting up and walking to the bathroom is about as far as I can go, even then I am wobbly, shaky and nauseated. On Sunday I was finally able to eat something, however it tasted of metal.
I feel like the world is hastily passing by just outside my bedroom door.  I'm praying Dr. Lettieri will take out the stitches and close the open wound on my neck.  The skin graft he took was from another area on my neck and those stitches seem to be healing well.
It's hard for me to comprehend that I have gone under general anesthesia 34 times in less than 6 years. Each time the healing takes longer and seems to weigh down my spirit.  I want so badly for all these surgeries to be over.  I believe now that this nasty infection is under control we can finally get going with the important issue of the nerve--yes, there will be more surgery; and I will endure.

My view from pre-op

Heidi my pre-op nurse--these nurse are always so sweet to me

This is what it looks like now, after surgery.
I see some bruising on my temple next to my
eye...I always wonder what the heck happens
during surgery to cause these bruises.

My life is so different now, I've learned patience and empathy for other's during the past few years. I've also learned what is truly important in life, family first, then friends who truly love me for who I am.  I've had to let go of a friend who I sincerely thought would be with me from beginning to end. I simply do not want anyone in my life who cannot be authentic.  Friendships are wonderful but when they become complicated and draining--I'm out! I refuse to waste precious time with people who do not reciprocate the same feelings.  I choose happy, with that being said I am not perfect and do need to say "I'm sorry" at times.  Part of the reason I have not allowed too many people into my life is the fear of being rejected or hurt.  I'm so over that now, I know who loves me and who cares I've learned to discern good from toxic.

This brings me back to the initial reason for making this post, living in the moment. I truly believe we are the equivalent of the few friends we associate most with.  If I kept myself in worry constantly wondering if I am offending someone I'm not being in the moment.  Spontaneously giving service to those around me on a daily basis, strangers who I will never see again have given me more satisfaction and clarity of the direction I want my life to go.  Living in the moment allows me to flow through life daily intentionally looking for ways to better myself by seeing the needs of others.

Surgery Tomorrow With Dr. Lettieri

UNFORTUNELTY THIS DID NOT GET POSTED UNTIL AFTER THE SURGERY.

When I came home from the hospital last week I was told to clean the open wound area everyday with a solution Dr.Lettieri gave me and to keep it covered. That night I came home and cleaned out the area and noticed there was a bandage or clear mesh substance covering the area. I began to clean and took that very important piece of integra out of my ear.  I can tell you it was one of the worst pains I have ever felt and bled like crazy.

Looking at this now, I can clearly see the integra

I had a post operative appointment the next day with Dr. Lettieri, he was quite amused that I had pulled out the integra.  It is a glue designed to keep the area covered and only done under  general anesthesia. Imagine how dumb I felt, good thing Dr. Lettieri had an alternative and I was ok with his funny candor as he explained the importance and expense of the integra.

This is what it looked like when I went to see
Dr. Lettieri--Integra Gone

I've spent the past week cleaning the area everyday and keeping it covered. Yesterday I visited with Dr. Lettieri after spending some time with him it was determined I will enter into surgery tomorrow.  Dr. Lettieri is going to debris the wound and fill it with integra again.  I was under the impression the wound would be stitched back up, however he explained to me the risk of another infection.  He will eventually do a skin graft over the area, then we wait and see how it heals. I will be undergoing a few more surgeries.

Day after surgery--Dr. Lettieri Blonde Proofed
the integra...it won't be coming out this time.

This surgery has really been difficult to recover from. Maybe it's from the anesthesia but I have been nauseated and dizzy for 3 days.  Today I am grateful I was able to write a couple thank you notes and lift my head off the pillow for a few minutes without sickness lingering in my head.  I have not taken any pain medicine, I will start a regimen of Advil tonight to help relieve some of the pain.

Different Not Less

IF YOU ARE NOT COMFORTABLE WITH CURSE WORDS...DON'T READ THIS!!

Boy oh Boy, where to start.  The past 24 hours has been....well it's been eye opening.  1st off my book is well on it's way to being published.  I'm waiting now on little things like copyrights. This book writing stuff is serious business...not what I expected.

She's so cute, I love Weslie 

So yesterday I posted a picture of my new grand baby Weslie and I on Facebook. It was hard for me to post because of the way my face looked.  I take a look at myself everyday in the mirror,  I know what my face physically looks like. Most of the time I'm ok with the new look. I know doctor Lettieri is working hard to help me fight time with the nerve.  Realistically I'm completely aware my face will never, ever be the same but I find joy in the little changes I have been able to accomplish.  Sometimes I look at myself and feel sad or disgusted with what I see.  Then I tell myself I am beautiful, tell my lip to "move damn it" and go about my day.

When I got brave and posted an authentic picture of myself with Weslie, my mouth was not cooperating, neither was Weslies.  She had a crooked smile like mine, so I posted it with a sassy comment about she and I having the same smile.  Maybe I was trying to make other people feel better about what I knew they were seeing too.  I'm not sure but it was a monumental moment for me to finally be able to see it and say it like it is, I never want anyone to feel uncomfortable around me.

A man commented saying and I quote "You look like you're shitting yourselves" (excuse me I couldn't think of any other way to put it)  I'm so glad no one was here to see the reaction on my face when I realized what he wrote....I had to look at it several times to make sure I had read it correctly. I left my laptop went to the mirror and smiled, yep that's what people see! For the first time I was faced with the hurtful words of my reality.

I know the world can be a cruel place to live, but in my world I don't react the way this man did.  I was shocked and read it over and over again-then I cried, I cried like a baby.  I picked up the phone and called my sister Sonya, she of course thought I had been diagnosed with something new or perhaps someone I knew had died; that's how hard I was crying.  She soothed my pitiful heart, we hung up and I cried some more.  My friend Frank Filliapone text me a few wonderful accolades of kindness, to help me through the tears.  Danny Jones called at either the perfect time or the worst time possible....should I answer or not?  I did and tried to be a-ok, but again I started to sob. He was simply adorable and comforting with his words of encouragement. My friend Liz Decker text me too.  Then I had a Nerium meeting at my home, one that I have every Monday night.  I, again had to put on a 'happy' face and pretend everything was ok.  Inside I was dying, I couldn't stop thinking about every person in that room-what they see when they look at me.

On the playground as a child we heard "Sticks and stones can break my bones, but words will never hurt me" While this was a good childhood defense mechanism, words can and do hurt.  Sometimes the words said can linger long past the healing time of wounds of cuts and broken bones. Words can also cause pain that my never go away. They create an invisible scar that delicate people carry around their entire life. It's been proven that painful words can cause a lifetime of anxiety, anger, resentment and stress.  

In today's society we unfortunately live in a world much different than when I was a child. Social media is where the mean people can hide and sneak out every once in awhile to strike like a snake with venomous words. Sadly, it's not just children who suffer from cyber bullying and they don't just use name calling like we witnessed on the playground.  The internet and texting is used to hide behind, there now is a power people have to use hateful words they wouldn't dare to utter to someone in person or on the playground.  Some of the words are so hurtful and cruel they cause children and adults who have bright futures to turn to suicide to help escape the bullies.  

On the other side of the coin, the bright side, social media can also be used to spread messages of peace, love and happiness to the world. Kind words and posts on the walls of Facebook supporting one another, loving each other from afar can be supportive and actually nurturing to help people feel good about themselves.  We have the power within ourselves to build people up.  So often, people say something without thinking, I too have done this. Believing what we are saying is justified or they believe what they have to say is right or they think what they have to contribute is helpful.  

Sometimes silence is golden. "If you can't say something nice, don't say anything at all."  Choosing words of kindness and sincerity are beautifully powerful. I'm not sure about you but I want to spread happiness.  Honestly, there are times I want to slap someone, I want to give them a piece of my mind; but I've learned through having life threatening scenarios happen in my life; those things just don't matter.  The person matters, however my opinion does not, and it doesn't do anything but open up a huge can of worms.

When I walk away, give myself some time to process and connect my head with my heart I believe I walk away a better person.  I learned something from this message yesterday, no matter how much I try to spread happiness there are always going to be serpents I cannot kill, but I can learn from it, remember how it felt and never ever do that to someone else.

Blaise Pascal said "Kind words do not cost much. They never blister the tongue or lips. They make other people good-natured.  They also produce their own image on men's souls, and a beautiful image it is."  I choose to be someone who tries to make a beautiful image, one that unfortunately is not going to be a physical beauty, it is a beauty that will come from within me.

Both Liz and Danny left me with these words, go and write down as many things you can think of that you are grateful for.  I did that, and it helped it really helps because I have so much more to be grateful for than I do to be worried about.  The words of an obvious person who needs and desires attention through the expense of other people is really sad and sucked a lot of quality time out of me, time I could have spent on uplifting someone else.

I realized today, like my two grandson's with Autism we are different, not less.

Emergency Surgery With Dr.Sal Lettieri

The last few weeks have been a whirlwind of emotions.  Once again I am stuck in either a hospital bed or now in my own bed. I ran into the same problem I had with the first surgery. Dr. Lettieri warned me this surgery would be tedious. Besides the complications of waking me up from the first surgery the right side of my face has swollen up and began to drain not long after I came home from the first visit to the hospital.

Dr. Lettieri was out of the country, I called his office and was able to see another surgeon at Mayo Clinic.  Unfortunately the inflammation needed to be drained.  A fistula had formed.  Dr. Lettieri explained to Eric after surgery he was afraid this may happen. While he was in surgery the paraded gland (saliva gland) was in the way of the nerve he needed to connect with. Dr. Lettieri could not get to the nerve he needed without disturbing the paraded gland.  In the long run this slight unfortunate problem was unavoidable.

When Dr. Lettieri arrived home I saw him right away, and he arranged surgery immediately.  I am now at home, recovering with a drain hanging from my head. I was able to see Dr. Lettieri in his office on Monday he took the head wrap off, left the drain in gave me an anti-biotic and now we wait.

How am I feeling? I am not on pain pills, you know how I hate those. With that being said, I also hate not sleeping.  It's always a fight with me to take the medicine and sleep or live with the pain and use another source for sleeping.  I guess that was clear as mud.....ha ha.  My honest feeling is some pain, but grateful for a surgeon who knows what he is doing and is attentive to my health needs.  Once again I have been lead to a surgeon who I love.  In fact when his office called on Monday to get me in I advised Sharon his assistant "I will not be seeing any surgeon but Dr. Lettieri, I will wait if I have to."  I didn't she and he got me right in.  I want to hug him every time I see him, he is a breath of fresh air--but not necessarily a hugger.

So for now I lay in bed, work my Nerium business when I can, nurse my wounds and again thank the Lord for seeing me through a rough surgery.

Surgery with Doctor Lettieri

 It's been difficult to blog 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 for 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 in the early morning of December 2nd, 2015.  The last surgery I had with Dr. Lettieri was successful.  He took a nerve from my leg 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, trying to find a nerve that is workable from the right side of my face will take a few hours.

When I woke up in recovery, it was a little touch and go scary for Eric--not really 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 brains 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? Doctors get vacations?

I needed to go to Mayo Clinic since the surgery sight is bleeding.  I was temporarily fixed up, but will not be seeing another Surgeon until Dr. Lettieri gets back. (Monday)  There was nothing wrong with the surgeon I was able to 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 am well aware of 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 my face has backed up blood, either running down my throat or running 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 to come.

Dr. Sal Lettieri Eye Surgery

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

I cannot wear my cochlear device it is 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 hear that thing ring throughout the walls of my home) 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 eye lid 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, why not take it home?  That's the easy part, the more in depth portion of the eye surgery is basically to fix the chronic dry eye--I actually 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'm 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

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.

Blessed Abundantly

Well I made it to Cleveland Clinic. Rather than dwell on what is coming up, I tried to focus on more positive thoughts. If any of 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 cost you nothing, but will enhance your life, tremendously, I love it.

I had a day filled with tests and pre-op appointments.  It is extremely cold 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 am flying home on Saturday, his PA was a little shocked at my boldness, but I need to be with my family. One great thing, I am flying in 1st class, drugged up and will hopefully feel no pain.

I would be remiss to say, over these past 5 years I have been so blessed with positive influences, prayers, sincere friends I like to call  family, over and over again they never seize to amaze me with their receptive compassionate ability to feel my vulnerability.  There are so many who struggle privately, I would be one of them, however I don't have that pleasure, the obvious insecurity and self doubt I have has been public, but has helped me to 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 to your pain.

Life is so full of ups and downs, no one is perfect, no situation is always perfect, 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.

I love my sisters deeply, they sometimes are the people I know understand thoughts feelings and emotions that frquenly.  We all need someone to talk to , someone who really truly understands.  For parts of my life Sonya and Kris have been my people. For most parts 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, you could say I am blessed in abundance.

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.