Holding on Tight

The last skin graft is looking better

Everyday! I love Dr. Lettieri

With all I have going on in my life I continue to ask questions.  I know the Lord understands He loves me, even when I question and ask "why is this happening to me?" I wonder often "haven't I suffered enough?"  This should be the time in my life when I am looking forward to Eric retiring, loving and sharing time with my sweet grandchildren but instead I continue to feel as though my body is deteriorating at a rate faster than I ever expected.

Today as I studied the scriptures I came across passages I have read and studied over and over, but today they brought me to tears.  When Christ was on earth and visited the people he directs the people to ponder His words and pray for understanding—He heals their sick—He prays for the people, using language that cannot be written—Angels minister to and fire encircles their little ones. 

He perceive that the people were weak, that they could not understand all his words which he was commanded by the Father to speak unto them at that time.

He said to the people "Therefore, go ye unto your homes, and ponder upon the things which I have said, and ask of the Father, in my name, that ye may understand, and prepare your minds for the morrow, and I come unto you again."

When Jesus had spoken, he cast his eyes round about again on the multitude, and beheld they were in tears, and did look steadfastly upon him as if they would ask him to tarry a little longer with them. I would have wanted more too.

He said to the people " Behold, my bowels are filled with compassion towards you.

Have ye any that are sick among you? Bring them hither. Have ye any that are lame, or blind, or halt, or maimed, or leprous, or that are withered, or that are deaf, or that are afflicted in any manner? Bring them hither and I will heal them, for I have compassion upon you; my bowels are filled with mercy."

"For I perceive that ye desire that I should show unto you I see that your faith is sufficient that I should heal you."

Once he had spoken, all the multitude, did go forth with their sick and their afflicted, and their lame, and with their blind, and with their dumb, and with all them that were afflicted in any manner; and he did heal them every one as they were brought forth unto him.

 And they all went forth, both they who had been healed and they who were whole, Then they bowed down at his feet, and did worship him; and as many as could come for the multitude did kiss his feet, insomuch that they did bathe his feet with their tears.

The word that continues to come to mine is 'desire'.  It makes me wonder if I have enough faith, is my faith sufficient enough to be fully healed?

I have continually followed Him, I know too that I have let Him down in so many ways.  When I'm in these weakened states I wonder if I hold back my heart and not allow His grace to pull me through. What on earth am I supposed to be learning?  I am in continual pain, and now being diagnosed with kidney failure is incomprehensible.  Just 2 weeks ago I told Frenchie how happy I was, that I was finally starting to physically feel better.  I even told Dr. Lettieri I had a good feeling about the last skin graft.  His answer was that we are still not out of the woods, but that he too felt good about the graft.

So here I am once again doubting myself, pushing myself forward trying to mask the fear I feel inside.  I have three doctors appointments this week, then I am taking my grandchildren to Disneyland!!! Nothing any doctor tells me is going to get in my way of that trip even if they have wheel me around.  Eric and I have a trip planned for Hawaii in a couple of weeks, I don't want to cancel that trip either--in fact I just want to fly first class, be as comfortable as I can and for once think of myself.  I know we will not be able to do the things we had planned, this was as Dr. Lettieri put it "Finally, a much needed vacation before the next round of surgeries start."  What I feel inside is an emptiness I can't describe, no one I know will or should have to understand it.  The only thing I know for certain is that I am doing all I can to stay calm and be patient; only because I know the Lord has a plan for me.

Another Surgery

Before Surgery this actually looks really good in comparison
to the previous months.

After Surgery..I don't know what that yellow thing
is but it stinks like the hospital

I now have this doozie

Friday I  had surgery with Dr. Lettieri. It was not a planned surgery, so I was a little shocked when he called me on Wednesday to tell me.  

He did a skin graft taking the skin from my upper right collar bone area, I now have a new 3- inch scar but the good news is I think this will be my last surgery for awhile. Today I am very sore and still in pain.

The last thing I remember saying before I was knocked out in the Operating Room was 

"Dr. Lettieri....?"

"Yes" Looking up from his paper work

"Dr. Lettieri, I love you" and out I went.

I woke up in recovery with a massive headache and pain in my chest.  I didn't know Dr. Lettieri was going to take such a large area of skin for the graft; but I trust him and know he will take good care of me.  I am home, recovering now, it takes me longer after each surgery to recover and get all the anesthesia out of my body.  Surgery is becoming a monthly event, I'm happy Dr. Lettieri thinks this is the last one for a few months.  I need time to enjoy the Fall weather that will soon be here.

What's Up?

Ok so I haven't been the best at blogging my true feelings about the unfortunate facial paralysis I have.  Here is a quick synapse of what has happened just in the last 2 years.

• Mastoid (layman's tumor) in the inner ear canal, burned black skin, very long difficult surgeries.
• Woke up one day with the right side of my face partially paralyzed--spent 3 weeks in the ICU and had 3 surgeries to find out exactly what happened.
• The nerve in my face that controls the right side went completely dead--no reason except an infection we had a hard time getting rid of.
• I was told to go home and learn how to deal with the new face, Eric was told "Get used to your new wife, she will never smile again." (I love this Doctor, I am just stating how we heard it, not necessarily how he delivered it.)
• Went to Cleveland Clinic for 7 weeks waiting to have another at least 12-15 hour surgery. Had what I thought was a near death experience.
• Came home to Arizona, searched for a surgeon who specialized in facial trauma...found him, love him and he's at Mayo Clinic or Maricopa (options are nice)
• Had a nerve crossover surgery (layman's...they took the nerve from my calf and threaded it through the left side of my head, down to my cheek.
• Waited one year, and the nerve grew one inch a month--Dr. Lettieri very pleased..me too.
• Had the next part of of the nerve surgery, everything was great until it wasn't...infection again this time compromising the parotid gland (Layman's--your saliva gland)

Yesterday Dr. Lettieri called me to advise I will be having surgery tomorrow.  I realized tonight as I mentally prepared to enter surgery tomorrow....I am a professional at surgery.  The hospital admittance receptionist called and said 

"Monya, we are planning on seeing you at 5:30 am"

"Ok I will be there."

So simple, so comfortable and so REAL.  It's not normal for hospital staff to actually know a patient well enough to talk to them with such ease. No questions about health history or medications I take, not even the routine of no aspirin, no eating after midnight....nothing just "See you tomorrow"

I'm so tired of telling my family and friends about surgeries, asking for prayers, it's almost embarrassing for me I done it so many times.  I know those who pray for me don't feel like it's a burden but this story is getting old and needs an ending of Happy, and thriving in life.

When I start to feel sorry for myself I think about all the people who have shown me so much faith and hope during the last seven years.  I also think about my strength and the spiritual growth I have gained by going through these hard times. I'm not the same person I was pre cancer.  I know Heaven is watching over me and everything that has happened is for a reason....I have no idea what that reason is but I know the Lord knows and has a plan for me.  So as I retire to bed tonight I will kneel to pray once again to ask for guidance and inspiration for Dr. Lettieri to have steady hands and a clear mind as he enters the OR once again with me.

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.

Poo Poo On Dr. Lettieri

I had an appointment with my favorite smile doctor, hoping Dr. Lettieri would take this drain out of my neck imagine my surprise when he said

"That drain is not coming out today."

"There's no blood, I want this thing out."

Dr. Lettieri has beautiful blue eyes, they were staring through me with a smile as he said

"I'm worried about the fluid that is in your drain, I just want to send it off for testing."

"Um.....testing for what?"

"Not to worry, but before I take out your drain I want it tested to see if your perodid gland is leaking."

"I understand Dr. Lettieri but I need this drain out, it's driving me crazy and I'm going out of town."

"No you don't understand."...he smiled, but with a  concerned look continued "We have a huge problem if it's the parodied gland, then we are back to square one. I'm not taking it out yet."

All I could think of was he's trying to help me, I need to listen to him. I looked at him as he walked out of the room, totally confused.

When the nurse came in he said "Are we ready to take out that drain?"

I immediately said "Yes, let's take it out...." the door was open and Dr. Lettieri came running in and said

"Don't let her talk you into taking that drain out" Raising his eyebrows at me still smiling I wanted to smack him.

Then he proceeded to tell the nurse to go get what he needed to inject BOTOX into the parodid gland.

I said "BOTOX? What the heck for?"

"Before you get all bent out of shape, the BOTOX is injected into the perodid gland to help stop the draining, don't worry it will help."

The first shot of BOTOX was so painful I yelled out in pain saying "I'm going to kill you."

As he continued "No your not, I know it hurts like hell but it's what is going to stop that draining"

I'm not sure how many shots he actually shot into my gland I think it was about eight shots. With every shot the pain intensified.  I could hear and feel it crunching through the scar tissue.  When he thought he had hurt me enough, he asked

"So I'm assuming you don't want the remaining shot into your forehead?"

"Uhh....that would be an astounding NO."

The next day he called me with the results....."Yes it is the parodid gland draining, that drain is not coming out yet."

..."Seriously? Of course it is, you do know I am supposed to go out of town and won't be back until August 3rd?"

"Yes I realize that but it is not coming out, this is a potential serious problem."

Later I text him "Thank you for taking good care of me, I'm sorry if I was mean to you."

"Belive me, I've heard worse, let's just get you better so we can start on the nerve situation. I know the shots hurt but they will help close down the gland."

So for now I still have the drain hanging out of my head, and now my BAJA is leaking something.

Surgery #35

On June 30th I entered Maricopa County Hospital with Dr. Lettieri (my smile doctor)

Myself and Dr. Lettieri-just before surgery

I wasn't nervous or afraid, after all he was just repairing some of the skin that was ripped off after my skin graft.  This should be an easy surgery....right?

Afte surgery they doctor usually takes Eric in a private room and discusses the finding of the surgery.  Not expecting much change imagine Eric's surprise when Dr. Lettieri told him he found a lump with the consistency of cancer he needed to extract and take to the lab.  During that extraction he had to cut through muscle and down to the bone. This has been very difficult to recover from; he also left me with no appetite and a drain hanging from my head.

I was texting Dr. Kreymerman the other night, he was asking how I was doing....I sent him a picture of my drain and told him these always remind me of him.

PK's answer back "Gee Thanks"

My reply "It's not a bad thing, It just brought back memories of me wanting to kick you when you asked me to wear it for another week.  Now I realize the reasons why.?"

Dr. Lettieri has been so kind and compassionate with me on Tuesday I was back in his office. Hoping for the drain to come out but realistically knowing that was not going to happen and it didn't.

On Wednesday I was in so much pain I could not turn my head, lying my head on my pillow was excruciating  pain also exploding me into tears.  I called Dr. Lettieri and asked if he could meet me take out the staples, which I thought was help relieve.  He took out all of the staples, the relief from that pain did not improve for a few days.  With lots of ice packs and patience the pain finally subsided well at least a lot less than what it was.  I do not like pain medicine, so I resorted to ibuprofen on the proper requested amount from the Dr. Lettieri.

The best news of all was Dr. Lettieri telling us the lump was 'CANCER FREE' this was encouraging. 

The lump was full of scar tissue and muscle from previous surgeries.

My family seemed very pleased.  I had many people praying for me from every religious beliefs. Thank you to everyone person who helped the those prayers meet the Heavens because it worked.

I thought I had been so spoiled going to Mayo Clinic, I still love and adore all my doctors who I still see. However, Dr. Lettieri who is hired by Mayo Clinic also works through Maricopa County Hospital is brilliant in all he does.  Meeting him at MCIH is so much easier for me and for him. 

The staff at MHIS is by far the nicest people I have ever met.  They remember me when I return and call me by my name with a huge hug and smile.  I am never left alone, one of them is always with me and I appreciate their attention and kindness.

Just to give you an idea of the seriousness of this
infection.  It is getting so much better.
Thank You Dr. Lettieri

This last procedure will hopefully do the trick and clear this up so Dr. Lettieri can move on to the nerve problem.  I know many people have asked me if this was a Doctor error.....I want to say with and inequitable answer ABSOLUTELY NOT.  My mother and brother both died of infections, it's a part of the make up of my DNA.  I cannot take them lightly when they occur.

Today I still have the drain, that will hopefully change tomorrow.  Eric and I have not gotten away for quite some time and we have a trip planned.  I'm leaving on July17th for a Happiness convention in Dallas.  I will also be filming a video for them. Then meeting Eric in Cancun after ward  I have to get Dr. Lettieri's approval, but I know as well as he does I need a break. 

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.

Post-op With Dr. Lettieri

On Thursday March 31st I entered Maricopa County Hospital for my post op to the surgery I had on Monday March 28th. I felt good, had no idea what was about to come out of his mouth. " We are going to admit you in for an immediate surgery it looks like things have made a turn for the worst" The surgery was not long but I was not expecting to be headed to surgery so had driven myself. Frenchie left to take care of some maintenance issues on the condos in Mexico and would not return until Friday night. I wanted him to enjoy his time away, as he loves to visit Mexico and I know this would be an in an out procedure there was no need to alarm him if not necessary,  I quickly sent a text out to all of my children asking them if any of them would be available to pick me up after an unexpected surgery but to please not tell their father. I knew he would rush home only to be waiting on me when he could be enjoying the cool breeze of the ocean. Of course this escalated into a full blown major even when Blake decided to call his father and tell him what was going on, without actually knowing what was going on.  I ended up calling my sister Sonya and she was able to work out picking me up. She said Dr. Lettieri explained to her there was some infection to the peroded gland.  Sonya picked me up and drove me home where I rested for the rest of the day.

Sonya mention when Dr. Lettieri talked to her he told me the cut on my neck is an open wound, he stuffed it with antibiotic beads. I've never heard of them and have to admit I was curious; but I was told not take the bandaging off.  Last night  blood was dripping and causing the bandages to loosen up. I text Dr. Letieri and asked what to do, he said to keep it covered with an ACE bandages around my neck to keep everything sterilized.  It was never sterile, it dripped constantly their medicated bandage was falling off bit by bit, piece by piece....believe me it was not sterile.  One morning I was changing the dressing because it had so much blood, it was very difficult to keep it from leaking. The packaging and taping they used caused the sharp edges of the tape to gouge my neck.

Anti-Biotic Beads--they look like teeth

On Saturday I received a call informing me I would be back in surgery Monday April 4th (today) at 5:30 am. I'm not exactly sure what this surgery is for, maybe to take out the antibiotic beads
Dr. Lettieri place in the open wound on my neck, if that is the surgery it should be quick and I should be home to my comfy bed before noon. Giving me enough time to heal and be on a plane for St. Louis on Wednesday.

I was told when being released from the hospital exactly what I was suppose to do to keep this doozie clean.  It was stuffed with saline soaked gauze, then a dry gauze over that then wrap it up with an ACE bandage to keep it all sanitary and clean.  Pulling the gauze off was brutalizing. Not enough pain medicine could keep from wanting to scream out in pain. I soaked it with as much water as I could.the started to peel away the gauze it was dry and bloody.

now that is impressive

I text Dr. L to ask him if it was normal to feel throbbing pain, not be abel to turn my head one way or the other, and to barley be able to open my mouth....?  His text back was Yes it is normal, but you need to get some ibuprofen in your system then it will start feeling better.  Dr. Lettieri told me to keep the wound wet, clean and covered. He can't stitch this up until full recovery occurs.  I will see him next Monday.

My body has an awful time healing, I'm exhausted quite literally tired of surgery after surgery, weird diagnosis after another; it's time to live an abundant life free of pain, sorrow and exhaustion.  Within one week I have had three surgeries, scraping and cleaning out infection.

Surgery March 28th Dr, Letteiri

I had a hard time sleeping last nigh with only 3 hours before surgery I at least tried.  I'm not anxious about the surgery or Dr. Lettier. Again this morning  doctors and nurses all had positive things to say about him. One nurse said  "Oh My Gosh, I would not have any other trauma surgeon work on me. The anesthesiologist  and his assistant mentioned him as colorful.  I know he tries to come off as a hard butt, I've seen it with the residents when they make a mistake.  However, I know Dr.Lettieri and know he wants to teach these young up coming Doctors how to do procedures the right way, the first time.  He explained to a resident at Mayo if he had not known what I was going under sedation for or understand where I've been, my history, fears and anxiety this cute little resident could have cut off the wrong ear, or with other patients the wrong arm or leg.  Yes, he was a little rough with him but respectful in showing him the correct way.  At that very moment I knew he was the surgeon for me.

So he gifted Eric  and I with his present explained exactly what he was gong to do, then they talked real estate---blah blah blah. When he left for the surgery room Eric sat next me to and held my hand telling me how beautiful I was.  Seriously Nerium works, my skin has never looked or felt better.  Several nurses hearing him talk about my beauty were so interested and rushed over to our little pod.  He then told them how beautiful they were and how refreshing it was to work with such happy women and men today.  All three of them were shocked, it was as if no man had ever told them. Eric snapped a picture with me and them for my blog.

One nurse said when I walked in, there was aura around me, she could feel my energy was one of happiness.  This made me smile without hesitation, she was seeing past my own insecurities. She then asked me to go remove my make-up...very proudly I announced "I don't have any on" she quickly grabbed by chart and sighed..."you are 53 year old?" me "yep and proud of it" her " I want to try it, and even sell it if I can." me "Of course you can, here take this Success magazine and I will get you a sample just as soon as I can get your phone # and email address. (email sent before I entered surgery).

She then asked me about my journey with Nerium, I told her the truth, my life, just like everyone else is full of trials, most we cannot see.  I joined Nerium 2 month before the facial paralysis.  I told her it was an inspired intervention, I've now had 10 surgeries with Dr. Lettieri and 31 total in the past 6 year
at Mayo Clinic with some pretty special surgeons.  I have never slowed down sharing everyday, magazine, bottles, videos, 3 way calls, etc....10 core all the way. The most important things she loved about Nerium was the Happiness Movement and the Night Cream.  I wish the person who told me "If I spent more time on Nerium than I did on #happyacts for the #marchtohappiness I would be making a lot more money, would have heard this conversation. Nerium graciously allows us to do all of them at once. I do, I am always prepared with Live Happy Magazine, pass a along card and stickers--but those always when appropriate come with "Have you heard the buzz about this amazing Anti-Again named Nerium"  I always do at least one #happact a day and feel uncomfortable sharing those on social media, I've always been taught acts of kindness should be done in quiet with a reverent heart.  But since it was the challenge  for March 20 being the international Day of Happiness--they asked us all to do an act a day and post it util March 31st.  Surround yourself with like minded people, I happen to enjoy sharing Nerium and sharing a cookie or two,

This reminded me of a story told in Church yesterday by a bishop who visits the men in Prison. This young man we will call him John made some mistakes as teenager, drinking, drugs etc, but was finally able to reconcile with God and be forgiven. He moved from where he lived to get a fresh start his brother and wife invited him to live with them in their barn until he could get a job. He did and was grateful to them. His brother's oldest daughter told them that John had sexually abused her. This went to trial, but during the trial the little girl told her mother she lied, that it never happened. Johns brother and wife never told anyone, and John was sentenced to 65 years in Prison at age 22. He begged and pleaded with family to help, all of them including mom and dad, brothers and sisters wrote to him and encouraged him to forgive. He's never heard back from his brother or sister in law. It took John 10 years in Prison to finally come to a place of forgiveness and allow the spirit to help him survive. Last month when the Bishop visiting him, he asked the Bishop to lay his hands on his head and give him a blessing, but in this blessing he wanted the Bishopr to ask the Lord to forgive his niece, brother and sister so that they could get on with their lives. I entered the County Hospital this morning for my #31 surgery, as my husband and I walked, in front of us was a young boy probably in his 20'a coming from the prison. with guards and shackles on his arms, hand and feet. Tears rolled down my face, looking at Eric (my husband) he immediately thought I was anxious or scared about my surgery, I then smiled at the young boy, said "hello, have a good day" and my husband said "don't talk to them" My tears were both for all of us who immediately judge, it's a natural reaction, and for this young boy whether guilty or not, we are not his judge our mission it always to cheer up the weak and show compassion for the wounded. What if that were your child?

Because He Lives

Today is Easter 2016.  I enjoyed every minute of the day.  Eric and I attended church, partook of the sacrament and listened to Cindy Packard and Kyhle Powell eloquently speak about the resurrection of Christ.  I was deeply touched by Cindy's talk, as she spoke of our lives in Heaven I closed my eyes and imagined being in a perfect state of mind, perfect body, no scars and being embraced by Eric's mom and Dad.  I so look forward to that day!  My life is beautiful right now, I am finally beginning to be ok with who I am, what I look like and how I speak to people.  I have 4 darling grandchildren and one to arrive in June, these sweet little angel's bring so much joy to my life. Recker is 6 year's old now, today he was so excited to take my phone and watch movies he does not have at home. As I watched him swing the bat at the traditional Williams Easter piñata his smile was pure and refreshing, he is perfect in every way.  Ezra is 3 year's old now, his laugh is contagious when he walks into the room we definitely KNOW he's here! He will run into any of our arms hug us tight and give us a big kiss on the lips....then smile with those big huge eyes of his.  He say's a few words now we relish in those moments because we know children with Autism can regress, as Recker has at times and we may not hear a word from them again for months.  Phoenix is a blondie just like his dad and his mother were at his age.  He just turned 1 year old and is making a name for himself.  He is darling walking around saying while pointing "that....that.....that...." He say's mom, dad, papa, bye bye while waving and an animated Hi to everyone he see's.  Wesley is our little princess among the boy's.  She is 6 weeks old and purely angelic. 

Because I know He Lives I can face tomorrow.  I love these hopeful words, tomorrow I will enter once again into a surgery with Dr. Lettieri.  I'm hoping to see Eric's mom while I am under sedation no one brings me safely to my comfort zone like she does.  It's late I'm tired and need to get rest, I have no anxiety, no fear going into this surgery I never have with Dr. Lettieri he gives me strength and helps me to see the big picture.  This surgery I am having is because a sore on my neck where the drain was placed during my last surgery will not heal,  that surgery was on December 2nd.  I have a problem with infection.  Sonya explained to me this week that my mother died from an infection she battled for 3 year's, seems I have her gene's running through me.

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.

Salvatore Lettieri Rewarded

So.....I stand on my statements Dr. Lettieri is confident not cocky...he knows what he is doing.  I would not want any other surgeon working on my body.  I love him!! Congratulations on a well deserved award 2015.

Dr. Sal Lettieri

In December I had 2 surgeries with Dr. Lettieri. I was able to go back to work in January, but for some reason the area on my neck where the drain was inserted is not healing.  I'm tending to believe Dr. Barr's when he told me my body unfortunately does not heal as most other patients do.  I have bad gene's I think is what he said.

I'm still changing the bandages 3 times a day, the wound gets better then suddenly goes bad again.  I'm not going to let this stop me or slow me down. I'm still not giving up on Nerium, trying hard to be true to myself, reading from a good book everyday and sharing with others.

Insomnia is still a major side effect I'm dealing with.  The sleep doctor wants me to get up every morning at 4:30 am, this is the time I get up to go to American Airlines for work.  However, I only work three days a week....I've tried but not sure I can keep this regime as it is not helping me to sleep.
Dr. Northfelt once asked me "If there was one thing you could have back pre-cancer diagnosis what would it be?" my answer is always "I'd love to be able to sleep or even take a nap!"

My hip is slowly deteriorating, Dr. Lettieri has given me a name of a orthopedic surgeon who he thinks will help.  I can no longer keep getting cortisone shots, well I can, I just don't want to.  I need a permanent fix not a temporary bandage.  I'm hoping to do this without surgery, so I will go forth with this new doctor and see what he has to say.  If Dr. Lettieri knows him and recommends him, I'm in good hands.

Today I am grateful for options in medicine.

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.

Hopes and Dreams with Dr. Sal Lettieri

This time 6 years ago I waited anxiously for a negative diagnosis of cancer.  Not receiving the news I was expecting, looking back on this journey I've been on I realize I am being prepared. For what? That I can't answer, I'm not sure I want to know.  I would be lying if I said I have not had days when I want to crawl up in my bed, close my eyes and not wake up.  I have felt unmeasurable pain, physical, mental and spiritual.  I think we all want to believe we are "strong" If I had a dime for every time someone has told me how "strong" I am in the past 6 years, I'd be a rich woman. I'm grateful to those people.  So many times I have prayed for a miracle and felt abandoned. Now that I've cried enough  tears to fill a swimming pool I trust in Him.  So many of us have a hard time recognizing the blessings that come in disguise of a trial.

Funny thing about that is, I am a rich woman.  Not in a monetary way, but I am richer in my strength of who I am.  I've been forced to live my life with loneliness, hardships and pain. What if I had not experienced these things?  Where would I be now? Who would I be?  He has bigger and better plans for me. I am in the midst of fulfilling commitments and I know He will keep His promises to me.  I will serve other's, be happy with whatever circumstances come my way.

I have had to learn to challenge my thinking, to lean on a positive environment of people.  I'm trying to learn how to balance my life.  Work, family, Nerium, Mayo Clinic, friends, personal development and daily intentional goals have helped me to keep focused on what is most important.  I've had to be brave in circumstances where other's don't understand or actually don't have the capacity to understand what this past year has done for me.  Just when I thought I could never look myself in the mirror again, I became brave I let it define and refine me.  I learned that my face is not who I am.  I can't say I have fully embraced the idea of a partial paralyzed face.

A year ago I read a book that changed my life and added value to who I am, I will forever be grateful for having the knowledge before I read it, that I am a beloved woman of God. If not for having that testimony I probably would not have been able to make effective choices,. I've learned your thoughts either serve your growth or serve your decline.  It's been proven we make and average of 50,000 choices everyday.  I've always been a journal writer, a reader and I love good uplifting music so when I read The Slight Edge by Jeff Olson, I was like a sponge. I  can attest to the power of words but as a child words were usually to my detriment.   The Slight Edge convinced, and reconfirmed to me  I have been lead and whispered to by the spirit all these years, I'm exactly where I am supposed to be.

Humility, a word I probably would have never used to describe myself 6 years ago  I'm progressing   by studying everything I cab get my hands on.  While studying I often think of all the people who have touched my life.  Who I think are a true example of humility.  Not one of these people know they are humble, isn't that interesting? It is who they are, an attribute they have mastered without knowing they have.  Some of these people have had devastating events happen in their lives and learned to control their thoughts and actions to mirror match a Christlike attitude. Other's seem to not have had any apparent significant trials in their lives. They surround themselves or have been surrounded by proactive people who have built them up, showed them compassion and unconditional love.  The attribute of Humility is such blessing, and not easy to accomplish.

During my reading of the Slight Edge and studying scriptures, I am finally able to say I believe in the power of the brain and how our thoughts, positive or negative can effect everything.  I made the choice to look myself in the mirror everyday and say "You will smile someday" It's been over a year, I've had 3 doctors tell me I will never smile again, I will never have facial movement on the right side of my face. I'm glad to report not all doctors are in charge of what the outcome of positive mental attitude is.  Dr. Lettieri told me I would smile again. He has encouraged me to continue to work that muscle.  Every morning for a year I tell myself over and over again "I will smile again" then I tell my brain to tell my mouth to move.  Dr. Lettieri has never given up on me, he has never said "You Can't or you Won't" It sometimes requires a surgical procedure but I am slowly but surely starting to tell my brain to simultaneously smile when I tell it to. It's working, I am reaping the rewards of my daily affirmations. It's a slight smile, but what's more important is realizing, just like reading from a good book everyday, kneeling to pray everyday, having faith all things I've done all my life are things I have mastered by doing them receptively.  Those things are a part of who I am, if I stopped doing those things it would be like not brushing my teeth everyday, eventually they would rot. It really has been such a slight change, but adding it to my daily routine has strengthened not only my brain and facial muscle but it has lead me to believe an arrow could be shot at me and I could repel it.

I am endeared to Dr. Lettieri, and to Heather Lucas.  She has seen me through so much.  I miss Dr. Kreymerman and wish he was here to see my  progress.  Dr. Lettieri has now been re-named as my "happy smile doctor" He said I would, I said I could and I am making progress.  I am beginning to dream again, to have hope for my future. Prayer, the greatest miracle in my life when burdens have weighed me down, prayer from so many people have helped me to believe in myself again.  Putting my faith in Him I believe I have even greater miracles to come.  He could take away all of this but His plan is perfect in every way.  These trials are refining me into the woman I've always dreamed of being.

Post-Op with Dr. Sal Lettieri

This past week has been hard, not because of the pain from the surgery.  Staying home and not being able to drive has been difficult. Today I had my post op appointment with Dr. Lettieri.  Sonya was so sweet to take me to Mayo I don't like anyone to go with me because it is not a fun way to spend time. This time I was forced to ask for help, Eric could not go because my appointment time was changed at the last minute. I wondered what she would think of Dr. Lettieri and hoped she would love him as much as I do.  I warned her as soon as I introduce her as my sister Sonya, he would have a smart comeback about Monya-Sonya. I was right, he asked why "I said it was the 60's"  he laughed asked if we had another sister named Tonya, and of course I said "oh no, that would be too easy her name is Kris.
Today he had a young resident with him Dr. Deep very cute and very young. Immediately Dr. Lettieri announced he was not happy with the eye surgery.  We're going to wait until all the swelling goes down then he will decided how to proceed with more surgery.  My eye started to open yesterday and it is dripping more than ever.  He said it was just going to get worse, and that he wished he had been a little more aggressive with the bottom lid, it's drooping more than Dr. L wanted it to be.
Dr. Lettieri was really happy about my nerve cross graft he did in February, it is even better than what he had expected.  I am hoping I can wait on the eye surgery and have him do that at the same time as the nerve surgery.  I didn't bring that up with him today, I will be seeing him again in a couple weeks.
Heather came in and took out the rest of the stitches in my eye while Dr. Deep and Dr. Lettieri talked doctor talk--way over my head.
Today was good news about the nerve, but surprising news about my eye.  I could tell he was disappointed.  I told him "it's ok" he said "not for me"  I made the assumption he was being hard on himself because he's a perfectionist. He said "No, that has nothing to do with it, I just want you to have it working at the best it can, and I know it won't so I want to fix it" he continued to tell me I would have more drainage than I had before if I didn't get it taken care of.
Many people have questioned my choices, guess what? that's ok I realize you are not living my life you are not the one who has to kneel and ask what to do.  I feel completely comfortable with the decisions I have made. Many have given me natural path choices and questioned my choice to go medicinal, it's ok too. Everyone has a different thought process, these choices were made by relying on the Lord to answer me and lead me to the right places.  I can honestly say the only time I doubted a decision was when I went to Cleveland Clinic, I felt rushed to make an answer and Dr. Lettieri was out of the country when this all happened a year ago.  We made a fast reactive choice, based on the fact we were told with a nerve we only had a small gateway--because I didn't know a "small" gateway didn't mean I needed it taken care of within a week or two. I could have waited for Dr. Lettieri.  I don't look at things that way, my mind doesn't process that way. If I hadn't gone to Cleveland Clinic I would not appreciate and love Dr. Lettieri like I do, I wouldn't appreciate Mayo Clinic like I do.  So to those skeptics who like to give me their opinions, I will not apologize for  following my heart listening to the spirit and doing what we thought was best at the time.