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.

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.

Love One Another

I've been in Ohio for 5 weeks now, next Thursday I will be going under the knife again.  I realized  how much I need the Lord to bless me and watch over me.  I go to Him in silent prayer most of the days now, I don't have a lot of privacy, and I think it's been really good for me to be here with Diana, she's been a great source for me, as my nurse she needed to come to give me infusions every 12 hours.  We were under the impression I would have to get lab work done and see another doctor for clearance.  We did all of that last week, and I really should of just come home so I could see Eric and the kids.  For some reason I was not thinking straight, Diana suggested we go stay with her family who lives one hour and 1/2 away.  This would save us some money and get me out of the hospital environment.  It truly was a great distraction. Her sister and brother in law are empty nesters, it was a beautiful quiet home I could rest, read and have some quiet time.  Although it was awkward at first, I soon found out Angela and John are down to earth people, but also a very Christian Catholic family. This brought me relief, knowing I would be able to read my scriptures every morning, especially for preparation for my surgery on Thursday.

Diana and her sister Angela come from an Italian family, they love deeply, and laugh loudly--very loudly.  I think I will miss that the most when we part from each other once I am home, but I hope we will be able to keep in contact through texting and calls.  These people didn't know me, they didn't have to take me in for a week, they had choices, but they chose to show Christ like Attributes by opening their home to me.  I'm sad I didn't get a picture of John before I left, he and Angela were leaving to see their son daughter in law and new twin grandchildren in Columbus,  John did not get home before we left.  They truly are wonderful people, I felt like home and did not have one panic attack.

My new friend Angela--Thank you XOXO

Today we drove back to Cleveland to be closer to the Cleveland Clinic, we are within walking distance and it a lot less money, and actually a better hotel.  Tomorrow I am planning on going to a Cleveland ward, there is one within 1 mile of here.  Then we may drive to see the Kirkland Temple.  I can't risk catching the flu or getting a cold, so wearing a mask is mandatory when going to church or crowded areas.  I have had a great week--mentally trying to get prepared for surgery is always a quiet time of processing for me......I've decided no matter what the outcome of this surgery is I choose to be happy, I will not let this define who I am.  I have a great family who loves me, and been blessed with amazing friends who will not be embarrassed to be with me--I've tried to keep it light, not get to carried away with the facial paralysis, because the doctors are going to do the best they can, I have faith in them and they are very confident I will have great results.

  I never thought I would ever feel this way but I'm looking forward to getting this over with and getting home to my family.  I miss them more than I ever thought I could.  My grandchildren are growing through Face time Ezra looks so big and tall, Recker too, he came up to the phone and kissed me today.....I cried....then Ezra wanted to kiss me too.....I cried more.  Kayla was so sweet to follow them around the house with the phone so I could see what they were doing. Ezra is getting so smart, his daddy has been teaching him all sorts of things. He knows where his toes are, his eyes, nose, mouth and ears.  He also growls loud when you ask him "what does the Lion say?" He blows kisses, and knows how to throw away his diaper all on his own.  I sang Recker a song, its one I've sang to him since he was a newborn, he was intrigued and stood motionless as I sang it.
 I have so much to thank the Lord for, my life will go on, my circumstance may not change, but I am determined to learn something from this.   I will do all the doctor asks me to do and hope and pray the surgery goes well and the doctors hands will be still, and that we will have a great outcome.  Tonight, my thoughts and prayer as I lie down to sleep, help me get a good night rest, and ask the spirit to be with me all week as I prepare for surgery. I have been trying to practice what I preach and put to practice some Christlike Attributes by doing something kind everyday for someone else, even if it's hold a door open, or give a half smile to a person walking by (usually that scares people so I try not to use that one) yesterday I did something very simple, I bought lunch for the lady behind me at Chipolte and she was so happy, surprised and elated.  She decided to pay it forward too.  The world would be a better place if we all could give a little more, it's not necessary for it to be a monetary service.

Love came in a box

Update on the last couple of days.  It has become extremely difficult to be so far away from my family, I miss them and Love them so much. I have tried to Face Time with them, and most of the time it works, but on those days it doesn't  work my heart is a little heavy.  I miss my Recker Love,  and Ezra's smiles and giggles.  I'm so afraid when I get home they will not remember me.  With the changes in my face, they were already beginning to doubt my relation to them before I left.  Eric, Blake and Chloe have been in the Dominican Republic for 10 days--I was intended to go with them, this trip has been planned for quite some time, when my sudden surgeries took precedence Eric immediately wanted to cancel the trip, I begged him not to, and thought it would be such a great bonding time for him and Blake.  Turns out I was correct, they had a great time, and are all on a flight back to Arizona.  While they were in the Dominican Republic they had the opportunity to work with Dr. Kelly, a surgeon who my daughter in law works with, his family is also dear to our family and we adore them.  Dr. Kelly is a surgeon and has been going to the Dominican Republic for 3 years to serve and give dental surgery to those in need,  those who  otherwise would not have the money to pay.  I will never regret having them go, it has been hard here in Cleveland without family, but I feel blessed to have modern technology where we are able to see and talk to each other through satellite.  I felt the spirit telling me to have Eric go, it was so strong that I told him if he stayed home I would not come to Cleveland Clinic, or have any surgery....it meant that much to me for him to go.  He has not missed out on one thing here, I have had to fully rely on the Lord to help me make some major decisions, it has been a great opportunity for me to get closer to my Savior than I ever thought I could, I have one spiritual experience upon another and I know this is where I should be.  I am not sure what the outcome of this surgery will be, but in my heart I know I should be here.

Kaitlyn always sending me pics of the boys
love love love

Haleigh with Ezra and Recker, thank you
for brightening my day

I got a knock at my hotel door this morning, it was a postman, (weird on Sunday) he delivered a package from the people in my home ward.  When I opened a gust of love took my breath away, it was filled with cards, notes, gifts and love from all the people I admire and love so much who live in our ward.  I was overwhelmed with the spirit as I read each and everyone of the cards and notes, over and over, and over again. I had no idea I was so loved.  I will never be able to thank each and everyone of them, but I have FAITH & HOPE in knowing they know.

Thank you, thank you

Marian Priday--source of putting together my box of love

 Eric and I moved into this ward when I was 30, Haleigh was in the nursery, all of my children were baptized while in this ward.  I was dealing with family matters, that eventually ended  sadly in my mom and dad cutting ties with me.  Wally Slade was our Bishop, since that time I relied so much on the women and men of this ward for an example.  It was one of the most difficult times of my life and I am so grateful to have moved where we did, I had to learn how to parent these little children of mine with lessons from Relief Society, I soon found the Lord leading my eyes and heart to watch and learn from the people around me.  Most of those people are still here in the ward, but as new people moved in and out our children grew older, teaching teens to hold to the rod was harder than I thought, and again I listened with my heart and watched with my eyes, there are too many people to thank, and most do not even know the example they have been.

This morning I went to the Shaker Ward, it was about 10 minutes from my hotel....everything was pushing against me to get there on time--I needed to check out of the hotel, and barely made it to Sacrament.  I felt like home as I walked in sat down and was able to, with a very still soul partake of the sacrament.  There are two things I would change, the bread for the sacrament (thank you Junel Durfee) and the music, I kept thinking to myself "we have such a powerful man behind every note played in our little 6th ward, and his name is Stephen Phelps" tears bubbled up and rolled down one cheek I miss my home ward.

I was glad I had on my mask and eye patch, two reasons 1. no one could see my eye, and tears only fell from one eye.  2. with the mask on they cannot see my crooked smile, a little girl walked by and I smiled at her with my eye, she smiled back.  I will never forget this little girl, she sang 'I'm trying to be like Jesus' with an angelic voice, I closed my eye and listened it was beautiful.  Then the counselor who was conducting announced how the meeting would go from that point, it was something I had never seen before--and I loved it.  He said they were going to have a Hymnology.  It seemed to be a normal thing that they maybe do a couple times a year, and today was the day, how blessed I felt to be there.
It is something like a testimony meeting, only who ever feels the spirit goes to the podium and tell of their favorite Hymn and why then the congregation sings the song.  The list of Hymns were some of my favorites too.  Count your many blessings, Praise to the Man, Love at Home, Where Can I turn for peace, Master the Tempest is Raging, I know my father lives, Because I have been given much, The Iron Rod,  I believe in Christ and Sisters in Zion.  This ward is filled with multi cultures, it was refreshing to see and hear from members of all races.

Sister Franklin

Bore such a strong testimony today

Sister Franklin and her Nephews

 A little boy with Down Syndrome, walked up to me and hugged me, then said "Hi" he reminded me of CJ Udall-- tears filled my eyes, but then what he did next was even more touching, without knowing I had a BAHA implant in my head, he turned around then back and looked at me,  took my hand and placed it on his BAHA, he too has SSD (single sided deafness) I have yet to meet anyone who has a BAHA.  I have no idea what his name is, but I will never forget his piercing eyes as he stared into mine, at that moment I could feel the Savior's love all around me.

When the meeting was over I was filled once again with the strength to get through this  week as I prepare for the next surgery.  Today has been a day for giving me inspiration to continue on, knowing whatever the Lord has planned for my future is His will and although I may not understand why things happen the way they do, I can rely on Him to get me through ALL of my journey here on earth until I return to Him again.

Promises not broken

I know without any doubt one day I will be strong enough to believe in this promise.  Right now I am feeling vulnerable.  I am so afraid I have spent a week in Cleveland trying to find a doctor who will take on my case, one in which I was told by two doctors they have never seen during their time as practicing doctors.  I am being fine tuned and my sharp edges are being sanded down.  Heaven has shown me so many miracles....and one thing I know for sure is,  the Lord will not take our pain away, I also believe he could take it away but when he does that we are deprived of blessings we would of never had the opportunity to endure, come closer to the spirit and strengthen our testimony of FAITH and HOPE in Christ.  

One day a few weeks ago I let Recker and Ezra play in my car while I was cleaning it out, they love to just play in the car because when he drive they have to be in their car seats so when bonbon let's them play they are all happiness and smiles.  The next day I was driving and I noticed both Recker and Ezra's feet and hand prints on the windows, I pulled my car over to the side of the road and stared at those prints with the biggest smile on my face--thinking "I want to absorb this moment, those little hand prints are my cute little grandkids...." why did they not look as cute when they were my own children's? Or maybe they were but I just forgot.  I later noticed in my house on one of the mirrors Recker's hand prints all over it, I did not take the windex out--instead I cleaned around it, this little boy has blessed my life more than anyone ever has--I love Ezra too, and I love him just as much, but the connection I have with Ezra is different than the one I have with Recker.  Last week when I was home I had the picc line in my arm, and a wrap around my ear, like a bandaid.  Recker always comes and gives me hugs, but this time he gave me the hug and then a had to inspect my picc line and I tried to explain it was a boo boo and bonbon just needs some medicine.  Then he hugged me again looked at the bandaid on my ear he first looked at it then looked me straight in the eye, as if to say "it will only hurt for a minute" and that fast he had ripped it off my ear and ran as fast he could---NO it didn't hurt, he just hates bandaids and obviously if he doesn't like them he assumed bonbon wouldn't either.  This little Recker boy is 4 and a half, he is still non-verbal, but he and I can communicate with our eyes and our hearts--He has a special bond with our Heavenly Father and I treat him as though he is a typical child, because we do not want him to think we think he less worthy or less loved than anyone else in this family. 

he's my little angel

I know that one day we will understand why some children are born with this special veil surrounding them and protecting them from temptations of the world.  When I look at this picture up above, it always makes me think of Recker, I believe his foot prints will also be next to mine, yes his perfect little foot prints walking next to me and helping me to get where I need to be.

Tomorrow is a big day for me, I am praying the doctor has already cleared his schedule for one day and is able to get me in asap, if not then I will be carried once again on an airplane to my next doctor on the list hoping for an answer.  I have a really good feeling about the Cleveland Clinic, and I know they have already told me my situation is an emergency case.  I realized a long time ago my life will never be the same, it will never be 6 days of exercise for 2-3 hours a day, riding a bike 150 miles a week, lifting weight twice a week and doing kick boxing 3 times a week....I never thought I could give those things up because they had become such a big part of my life, now I realize  my Heavenly Father has a specific plan for me, I'm still not sure what it is, but I want to be the instrument He expects me to be. The way I will accomplish whatever it is I need to get my body healthy again, and I will.  I always seem to forge forward, and I;m able to do it with the FAITH HOPE AND PRAYERS of all my friends and family.  Without them I would not be able to accomplish any of my goals, I don't ever want to let people down or be less than I know I can be, that's just who I am.  Because my life has been spared so many times, it tells me I have more to learn.  I truly believe everything happens for a reason, Heavenly Father is not just going to throw us out to the lions and not have a plan for us--still there are times when I  feel like there is nothing I can do but rely on Him, friends and family to pray for me.  I agreed to come to earth and take a body, and that earth life would be a difficult task at times, I believe when Heavenly Father sees our pain it must hurt him, because He can take it all away, however, if he does that we will not grow and learn and share with others.  My prayer for tonight is to help me sleep, even if I have to cry myself to sleep.  I will wake up in the morning prepared for a good plan from my doctors.  Tomorrow will be a good day, one day closer to feeling the sunshine on my face again.

It's not my time to go

I was hoping to get my picc line taken out today--NO SUCH LUCK--All the Cleveland Clinic doctors I see are out of town for a convention.  It was also a suggestion that I keep it in until my surgery.  I think I've finally made some decisions after talking to a few doctors, the proposal Dr. Barr's gave me is reasonable, however 3 doctors have told me that taking muscle from my tongue is a temporary fix and if I was an 80 year old women they may consider that option.  What they have seen work the best with someone who has a dead nerve like I do, is to take a nerve from my leg because it is the nerve that best replicates the nerve in my face. This can only be done if they find good nerves to work with in my ear. If there are no good nerves they will take a muscle from my arm and connect it, close off the right ear completely with some tissue from my arm and bring in 2 other doctors who will help assist with this process.  The plastics part of this surgery could be 6 months or more down the road.

When the ENT vacuumed out my ear and cleaned it up a little, he said the inner ear  looks good all he needs to do is clear a place in his schedule--This I will not know about until Monday.  This was good news, however I am still being cautious with my emotions, getting let down is so hard on me.  He was so reassuring to me that my face will not stay the way it is right now, drooped on the right side. He said there is so much that can be done with technology today.

Right now my head is on overdrive trying to keep up with my health  and  my Nerium business.   I'm thinking about giving up or quitting,  I'm gonna keep pushing forward, but there are times I can feel myself slipping, I know I need the Lord by my side.  I have to get constant reassurance from the Lord that I am doing what is best for me--I live by every word, every answer I get from the Lord.  I just need Him to let me know that I can do this, I would love to hear him say "your faith is bigger than your fear, and you can handle this"  Do you know how many times I have asked for the same things in the past 5 years?  I have made choices that led me to no where, but I had to find out myself when I arrived where I thought I was supposed to be, it was a closed door--then I would have to get back on my knees and ask again for the Lord to actually take my hand and lead me to where I was supposed to be. He sees the way I'm supposed to go, if He would just take my hand and lead me there I know I would be protected and safe, I would know exactly what to do.  This time it is different, I'm struggling, I wonder sometimes I've been forgotten, I wonder sometimes if I am even being listened to, it seems like the words are going to Heaven but the door is shut.  Sometimes I have to be told NO to understand the YES, and to realize sometimes my Heavenly Father says NO because he has a better plan for me.  It's just so hard sometimes to recognize the blessings that come in disguise, I have seen so many miracles happen in my life--I had a very spiritual experience happen while I was in the hospital, I don't feel comfortable sharing it right now, I shared it with my family the night before I came here to Cleveland.

All I know is that right now it is not my time to go to Heaven...the Lord has work for me to do here on earth, which is why not getting clear answers is so difficult.  I have no doubt He loves me, He always will, through the good and the bad.  Fear gives me doubt sometimes then I learn that the doubt is because of my fear--I felt like I was finally in a good place in my life,  I have studied the Lord's love for all of His children, it is so hard to comprehend, I guess the only way to maybe come close to understanding that unconditional love is to have a child of your own.  Never in a million years would I have imagined or thought I would be sitting in a hotel at 1:00 am across the street from a hospital wondering if the Lord is listening to me, does He know I need these answers?  In this early morning hour I am sitting in a bubble bath wondering if I have been abandoned by Heaven--realistically I know that is not true--many people are praying for me--I have prayed for me, I've prayed for Him to take me on His wings and take me away, like I can't do this anymore, I just want His sweet peace to pour over me and heal my soul,  I wish I could physically have His arms wrapped around me, give me some warmth, I want to go to the place where He can heal me, he's done it with other people, I need his mercy and grace to take me away, lead me to that place where I can feel no pain, no decision making.

Why can't my life ever just be normal?  I have praised Him for every miracle that has come to me, I have given all I have to the Lord, and He has lifted me to higher ground and allowed me to see miracles happen--for some reason it is not happening as fast as I need it to--have I not done enough to be worthy of this request--I put my face in a pillow and screamed as loud as I could tonight--what am I doing or not doing to get the answers I need?

--I WANT MY WIFE BACK--

First,  before I start on today's excitement, I have not been able to blog for awhile, not because of the neuropathy, because this is a sacred place I like to come, to get real with my feelings and come to a higher ground of healing--I'm having a hard time coming to grips with the new me--I don't like it--I feel like everything that has lead up to this moment was supposed to prepare me, but it hasn't and I feel like a failure in so many ways--with this being said I want to lead up to today's events.

 May 16th -Eric's birthday--I called and asked him to please NOT come to the hospital, I wanted him to spend some time with the family and grand kids--do something fun--being at the Mayo Clinic AGAIN is not fun--he had a hard time agreeing with this--but I insisted.

Ezra and Recker with Grandad on his birthday

I wish I could of been there, but so glad to get this picture text over to me--I love these little guys and really miss them.  Eric was able to go to dinner with the kids and have a great time with the grand kids.

Saturday May 17th

Today, Eric brought me home from the hospital--as happy as I am to be home--I am still drugged up, and cannot wait to get myself off of these pain meds.  If I listed the drugs I am "supposed" to be taking it would blow your mind--it does mine--I know they are doing this to keep my pain in control, as it was an extreme pain while we were in the hospital.  So I started out slow taking myself off of them to make sure I was not in any pain what so ever-- I knew I did not want to go through the pain I had originally felt, so have taken every precaution to make sure I am OK.  The 1st couple of days I slept hours upon hours--then tried bit by bit to slowly wein myself from the medicine, today I am completely off of all pain medicine and back to the regimen I was used to before this episode.  We arranged for a home nurse to come in and teach Eric how to administer my antibiotics twice per day trough a picc line in my upper arm.  Every   morning Eric administers my medicine through my picc line--then that evening 12 hours later he does it again.
Last night the home care nurse came by to take blood--it was a difficult take--my picc line was clogged up and it really took her over an hour to pull any blood out it felt as if blood was being pulled from my heart.--and I think she just  barely got what she could.

Today Wednesday May 21st

Eric and I got up early, he has arranged to be with me at this appointment today, and then head to work after. First he had to access my picc line, for some reason it was extremely hard out of one side it clogged up too--so he tried the other side and it was a struggle with him putting all of his weight into it he was able to finally push through.  Once that was done we headed on our way to Mayo Clinic--I looked at myself and told Eric I don't think I have ever left my home looking like this, he didn't see anything wrong with it.  My shirt was wrinkled, I had no make up on, bruises on my face. arms and hands --- I am a mess....simply put.  To walk into Mayo Clinic today was excruciating,  the smells hit me from every direction--I could see the people I passed looking at me as if I had a massive tumor growing out of the side of my face, my thought was...I should of left my sunglasses on, worn a mask and I would look perfectly normal here--when we checked in the receptionists saw my picc line hanging out of my shirt and asked me if I was supposed to be on the 7th floor at the hospital (equal to the 3rd floor on the Shea Campus--ports, picc lines and chemo) I said I have no idea, the lady who called yesterday asked me to come for blood work to be done before my appointment with Dr. Barr's, I assumed she knew it was to be taken from my picc line. She said no, it was to be drawn from a vein on my arm.  I was immediately called into the lab, where she proceeded to find a vein--nope not that one, after several attempts with not enough blood being drawn, she tried one last time in my right hand.  Yay, it worked she was able to get just enough blood, and in the mean time I found out the blood work was being ordered by my endocrinologist who had recently changed my thyroid medicine, and was checking to make sure it was a high enough dose--I suddenly remembered I had that appointment with her a couple weeks ago so she had no idea what I have been through these past couple of weeks, no wonder the lab draw from my arm. As we stepped out into the waiting area, there is always something going on, but today I was not in the mood.  Still a part of me watched as people came in and out, today there were two people who stood out in my mind.  One was a doctor, who came in his scrubs sat down looked around, our eyes met and then he was called back for labs. In the other corner of the room was a man and his wife waiting to see an ENT, I'm assuming when he tried to speak he had to activate his voice by putting his finger on his throat.  I watched him scare the lady off her chair next to him as he leaned in to ask her a question about some video game she was playing, she apologized and he then returned the apology.  This brought  the 1st smile to my face in weeks, why? Maybe because I saw that they too, found humor in it.

We were called  back sat  in a room where we waited for a very long time, but not longer than my appointment was supposed to be, we had just gotten there so early for lab work.  Dr. Barr's came in with his resident Dr. Coursin (Andy) I have been in such a foggy head, the second I saw him I remembered seeing him quite often at the hospital.  A quite familiar face, one I enjoy seeing, he's quite, yet seems to know his stuff.

I told Dr. Barr's I had completely taken myself off of all pain medicine--I think he was surprised, but mainly wanted me to be honest with him as to whether I was feeling the pain or not.  I reassured him and Eric, I am not in any pain, none--and that I am trying to de-fog my brain of all that junk.  He agreed it was OK as long as my pain was gone.  Then he took a look inside my ear--it is really corroded with dried blood, I was hoping they were going to clean that out today--nope he filled it with bacitracin which was like filling my ear with Vaseline, and the hotter it gets outside the more it melts and makes a mess. Then he asked me to come take a seat next to Eric.    He proceeded to tell me exactly what happened to me during my stay at the Mayo Clinic Hotel (Hospital) The nerve that he covered with a graft of skin, within days became gangrene, in other words the nerve died. He gave Eric a picture of it, the flesh around it is healthy, but the nerve itself died--and is now being covered by packing in my ear.
OK, so what is the  next step?  Dr. Barr's begins explaining, he has a team of Doctors available to help in surgery on June 3rd.  There  are some options, minimum go in and cover the nerve with a graft of muscle and wait. Or go in graft over the nerve, have another doctor there to do something with my nerves in my tongue to reposition over to the nerves that are not working in my face.  I'm sure I got some of this wrong--the whole time he was talking I felt like I was in a peanuts cartoon, the teacher is talking but my ears are not understanding--waaa waaaa waaa-- I continue to look at Eric and make sure he is taking notes.  Eric said "I want my wife back, I want her to be HAPPY again" Dr. Barr's said "if you're asking me if the right side of her face is ever going to be the same again, the answer is no, I'm sorry but the nerve is dead, we cannot bring something back to life that is dead.....You need to start loving the wife you have, and forget about her face ever looking the same again"......I could feel the tension, Eric did not know how to respond except "I never said I didn't love my wife, I just want to see her happy again"  "She needs to learn to love the new Monya, I was fond of the Monya you and I used to know, but I also like the new Monya" When he left the room for a moment, Eric and I looked at each other, with questions what should we do next? are we being hasty to make a decision?  Actually, just the opposite we looked at each other said we are not making any decisions today, we are going to wait, pray as a family and make a decision when we are ready.  I know with nerves there is a window of opportunity and we do need to make decisions, however, not today, not now, please.

 Fighting back tears, trying once again to be BRAVE--I think I have finally gotten to a point where I am ready to say "why?" I've done all that I've been asked to do, everything Dr. Kreymerman, Magtibay, Northfelt and now Barr's has asked of me.  I have lived a life worthy of feeling joy, I know my tears are not meant as a surrendering but I'm tired, this pain is not going away, and I'm not talking about the physical pain, this pain comes from deep within me--it makes me question everything I know to be true, everything I have preached to my children to live by--but I also believe there are times when life throws  us into storms that are unexpected, and it's at those times we are forced to face our deepest pain--it is then that we have to dig deep and decide if the pain is worth it, I know this life gives us disappointments and HARD things come.  I have been forced my entire life to stand up, be BRAVE, put on my big girl panties and move on.  Today, I'm not there--I just want to cry and I deserve to cry until every drop has left my body--

After leaving Dr. Barr's office, we headed up to the infusion floor, 7th floor at the hospital this is where the chemo is infused.  The antibiotics I am being infused twice a day are very strong, and cause my body functions to not work as well as I am used to--I spent a bit of time int he bathroom, several different times while waiting to called.  Eric took care of checking me in and getting out beeper and I positioned ourselves in chairs we could see the outside mountains, dessert and sunshine.  My mind kept thinking about Dr. Kreymerman, most of the time I look forward to these visits knowing I will be able to see him and Heather, even have lunch with them in between appointments.  Today, Heather is not available for hours. I'm nauseous taking in the smells of this floor, this hospital where I was just discharged from last week--it's more than I can handle--just when I close the door on this place it let's itself back in, for some reason it enters my life uninvited.  I let you go, but you find me again, I'm not stupid you take over my heart piece by piece, I can't help but wonder how many times I can pick up these pieces and start over again.  I watched as a nurse came and got Shirley, pushed her back in the wheelchair asking her if she was ready for her IVIG infusion today?  What kind of question is that? Who the heck say's "Hell yeah, I'm ready let's go it's a party back here?"  My thoughts went to Sonya, my sister she gets IVIG infusions once a month just like Shirley, Sonya has always been so brave, and faced the storms with integrity, I love her and look up to her so much, for many years she has been the matriarch for me--and now even she cannot calm this storm I feel raging up inside of me.

This is not just a passing through, this one is BIG, just as soon as I feel like I'm in a good place and can move forward,  like I've let this go, it always finds me again. --my soul is feeling like a resting place--- I can't handle anymore--my body is not a place of dwelling, I wish I could say the tears release my pain  but in so many ways  I feel like I am constantly learning to breath again and again,  this time this is more than tears, it's the sobbing, not wanting to be left alone I can't handle...yet at times wonder if that is my answer--I'm sorry this is so real and raw. I know God did not make my body to be a place to constantly feel this pain. I wonder how long do you intend on staying this time?  The depression and despair, the VILLAIN taking on a different name.

 I watched as plenty of people came in and out of the infusion unit today, some bald, some carrying their chemo packs on their backs in a backpack--I was trying every way I could to have a pitty party, then someone else would step off that elevator and give me a new perspective--a man with one leg, being pushed in a wheelchair by a not so patient wife, or husband and often wearing an oxygen tank.  It took quite a while  before we were called back, but finally a cute young well qualified pcc line technician took us back into a room, she could not access it and had to put some medicine in the line and asked us to come back in an hour.  We went down the elevator I just wanted some fresh air.  I heard over the loud speaker a "code blue" at the entrance of Mayo,  seriously? Could anything else happen today that would push me over the edge?  Right in front of us we watched a woman take her last breath, they worked as hard as they could, I watched and wished it was me. What a hell of an exit--drop down at the entrance of Mayo Clinic on your way to your car, take your last breath and be done, done with Mayo, done with pain, done with having to make medical decisions.......Today, I have no grace left in me, no patience, no remorse, no regrets, no feeling.

Eric was waiting for me in the cafe, he wanted to grab a bite to eat--none of this looks good, so I'll  have bit of everything-- grilled cheese, tomato and arugula sandwich, hot dog (something I never order) minestrone soup and a white chocolate raspberry bundt cake--none of  these were eaten--just itty, bitty bites--As I walked outside to find the perfect table, I glanced over and saw Tony Mendez PA to Dr. Barr's he didn't even recognize me.....I always said "since I've done away with sugar, processed foods and white flour, per Dr. Northfelt's request, if my cancer comes back, my final meal will be filled with all of the above" however, today showed me the exact opposite--none of this looked good to me, none of it tasted good, everything I eat tastes like metal--this is from the infusions of antibiotics I am getting, I want to throw up every time I try to eat--and it mirrors so much of how I felt going through chemo.  If I am honest I can say I would much rather be sitting in front of Dr. Northfelt having him tell me...those exact words "your cancer is back"  at least with cancer it was difficult to go through but the VILLAIN did not win, in fact I really hate when people say "she or he lost their battle to cancer" no they didn't, most people who go through cancer treatments come out on the other side of it a better person, a stronger person given a chance to redeem themselves and help others to do the same.  This thing with the nerve in my face, I feel is not going away--I'm not sure how I can recover from this.  I feel like I have a load so heavy I can hardly breath right now--my strength is gone,  I'm weak--I don't think all of my life I have ever felt this emptyness I'm feeling now. I've asked friends and family to pray for me, to ask the Lord to heal me, or to give me strength to endure whatever is coming next.....how many times do I need to do this? Oh geez, I know the answer to that before even finishing that sentence. This a world we live in where nothing is certain, but I know this--HE LOVES ME-- and ---EVERYTHING HAPPENS FOR A REASON--However, today, right now, I don't want to hear that, I'm sad, I'm scared and I'm angry.

 After we finished up my picc line on the the 7th floor, we were given the green light to go home--I ran to the elevator, got off on the 1st floor and ran past the piano player, as I passed the area where the lady had just passed away less than an hour ago, I glanced over looked at the people sitting in the chairs surrounding that area and said to Eric "I wonder if that guys knows and angel got her wings today, less than an hour ago, exactly where he is sitting" and then I ran as fast as I could to the car I mean I was like a bull trying to get out of the pin--Eric said "sweetheart, you really need to keep your voice down while you're walking or running through the exit"

This has been a very difficult week, looking in the mirror I am a different person--my face has partial facial paralysis, been told it is permanent--I don't want to look in the mirror--this is much worse than when I looked at my breasts for the first time after my mastectomy, at least then I could cover them up, have them fixed, and the baldness was hard but it never defined me--it grew back.  Yes, this is much worse... how can I continue in this body looking like this?  So many will say "but your alive" or like Dr. Barr's said to me today "but you have your eyesight" those words pierce my heart right down to my soul--I know those are supposed to be inspiring and help me to move forward-but right now I need to process  what happened today.

All I have is yours

Today is Sunday Jan 12, 2013

Well I did it, I went to church today, and was able to sit through all three hours, yay, pat on the back for me.  I was not feeling well yesterday and stayed in bed all day, except to get sick.  I also spent a very quiet Saturday, literally.  The kids all went to Disneyland, Jeremy Kayla Ezra and Recker spent the day together, and Eric was at work, honestly I was relieved to be allowed to just do nothing, but rest and pray I can go to church.  I made a goal to at least try to get through Sacrament, but I was able to make it through Sunday School and Relief Society.

I wish I could truthfully say it was easy, I can't.   This was a huge eye opener for me today, and I caught myself several times in tears.  I walked in a little late, Eric saved me a seat.  Just before I left the house I went back and forth to my room twice to pray....."please help me to understand what they are saying" that was my 1st prayer and not feeling quite happy with it, I walked back upstairs knelt next to that all familiar place next to my bed and poured out my heart, "I know you are teaching me something, or trying to, am I so hard headed that I am not getting it? please Heavenly Father, help me to listen with my heart today, even if I can't understand what is being said"  I waited a few minutes with my head low and eyes closed, expecting something, but it never came.

I was met at the chapel doors by President Packard, (one of my favorite people of all time) he had his head down with folded arms, so by this I knew the prayer was going on, I waited watching him, I could not hear one thing being said so watching him gave me the indication when the prayer was over. He shook my hand and we greeted with a sweet hello. I'm wearing a mask, so our eyes smiled.  I have never been frightened to enter the chapel, but today I was, until I saw Eric stand and help me get seated.  Marian tapped my shoulder and smiled, what a comfort if she only knew what I was feeling.  How will I communicate with these people I love so much, I can talk--that's never been my problem--I wonder why not? why didn't my mouth get reconstructed?  It's usually  the one thing that gets me in the most trouble, if you've followed my blog or know me well you know I don't keep much to myself. This has always been one of my downfalls, and hardships in life......just say nothing.....maybe this is what the Lord trying to teach me....for so many years as a child and youth I kept quiet through the rough times, after all we were the All American Family, I think once I gave myself the permission to speak I never shut up....ha ha.

I sat through Sacrament, having to constantly ask Eric what the speakers were talking about.  Mary Greer Spoke today and props to her, I could read her lips for most all of her talk, she is amazing and has been through so many trials this past year.  Just an amazing family the Greers, Julie is wonderful I love her, and I can see the growth and comfort she and President Greer are giving to Mary and her very small children after the death of Mary's husband last year.  Sunday School I caught very little of what was being said, it's so hard to explain I have about 25% hearing in one ear, and it happened over night, I have a very difficult time hearing when there is a group of people, I had no idea who was reading, quoting or commenting (one of those tearful moments)  When I only had hearing in one ear, I thought I was a pretty good lip reader--come to find out--I'm not--If I am talking to someone one on one I do really good, but when noise is coming from all around me I have no idea where it is or who it is.  I'm so glad Haleigh was with me in Relief Society today--I've always been a believer that nothing happens in life as a coincidence, I know if Haleigh was not there I could of easily asked any woman in that room to sit on my left side and help me to follow along with the lesson, but I loved having my sweet baby girl there, she whispered in my ear when she thought I didn't understand and she was right every time.

Today I have been thinking about a dear friend of mine who was killed by a drunk driver years ago, she and I worked together.  She taught me so many words in sign, it was something I enjoyed and always wished I had taken more interest in a class or two--I know I wouldn't be able to communicate in this way with my family or with anyone else who didn't know sign. But Blake didn't know how to communicate Spanish when he went on his mission, he came home and knows the language. Is this what I am supposed to learn?  Could I go on a sign language mission?  Remember these are just my wonderings--my mind goes places sometimes--like today.

And now here I am tonight, I can't sleep, worried about too many things.  I took a bath, listened to uplifting music with my ear phones on, so as not to wake the family with the speakers full blast. I went into Haleigh's bedroom read some of the Preach my Gospel, and finally decided to pray.