Friday, June 13, 2014

Smile with your eyes--

It's been almost 2 weeks I've been in Cleveland getting opinion after opinion.  I have finally found the surgeons I feel really good about.  The process they propose will  take a few more surgeries than I had anticipated and I really did have to place a lot of faith in my Heavenly Father to make decisions that are not only going to help the look of my face but also  the newest procedures in medical technology.  I asked all the right questions, most important, how many times have they performed this procedure.  The doctor I chose said he does this everyday, with 98.8% good result with patients.  I really liked him and he explained all the medical procedures in a way that I could understand, just like Dr. Kreymerman used to do. In fact I've spoken with PK several times about my procedures and doctors, he is fully confident I am in good hands here at the Cleveland Clinic.

I've spent most of my time in a hotel waiting for doctors to call--and you can believe every morning they get a call from me asking if anything has moved closer to a surgery date? Nothing yet.

Yesterday while I was at the Cleveland Cancer Center, I had a panic attack in the waiting area--I was not prepared for it at all.  I swift whiff of chemo threw me off--that smell is oh so familiar--there were a lot of sick people all around me--all I wanted to do was hug them, help them, talk to them,  laugh with them, spread some happiness with them--all these emotions raging through my body--I wanted to run, just run away as fast as I could--"Monya Williams" across the loud speaker shook me out of that odd place I was allowing myself to go.

Routine questions by the nurse--my legs were shaking I hate sitting still while I am have those panic attacks--it's literally impossible, but today I sat and stared out the window at the beautiful trees and floral, it's amazing how the Lord is always there when I need to be shaken up a little and brought back to reality--I can never deny how it makes me feel when I have these moments--I know He heals-I know His love is real-I've seen the truth revealed to me--I've felt the truth of His love---I'm proof of His unconditional love-- I've been praying and searching for answers, I know He has lead me with His hand and by the spirit to this Cleveland Clinic, but at times I'm lonely I wonder if I should be home helping my daughter with two small children, she is having surgery on Monday to have her tonsils taken out---I wish I could make time stand still sometimes--make everything in life perfect, just for a minute or two.  I could really use a batch of Recker and Ezra right now--if I could I would ask our Heavenly Father to let time stand still just for time enough to go to each and every person who has touched my life and spread happiness in my life--I have seen so many of my friends of all religious believes come together and unite as one, as we stand together our cause is greater than we will ever know--we are not just living in a weak world, we have so many around us that do know right from wrong and are strong in their convictions--I WILL always choose His way, in a world where there are so many who will not follow our Heavenly Father, I and many of my friends have made private commitments that we WILL stand for truth and righteousness.

Now it's time for me to meet a new doctor, another surgeon on my team who will be helping during the surgery--I really liked him, he was animated and excited as he gave me his run down of what he thought was best for my individual situation--half way through his explanation he lost me with his medical jargon I asked him to slow down and explain it in "blonde" terms.  He smiled and went over every option, he also typed it out and gave me a copy so I could process this. Basically this is what we discussed.  I have no function of the right ear, and have a large mastoid bowl with a fibrous base.

The ear is a major emergency that needs taken care of asap, however believe it or not my eye is the most important issue right now--I am in jeopardy of losing my cornea, and having to get a cornea transplant.  He is going to put a gold weight in the eye lid which will give the me ability to blink when my brain says it needs too, however there will be some training and re-hab on my part.
There is significant concern about the boney loss in the mastoids that have been removed, this  will need some level of bone resection.
All surgeons agree that if a good frontal nerve stump can be found then a sural nerve jump graft is necessary. In English--- if there is a good nerve they can use they will do a graft of nerve from one side of the face (left) to the right side.  It's best to not let this wait because of progressive osteomyletic changes.  If this is the case then they recommend a more simple reconstruction 1st, which most likely could be done with a SCM (google that) flap and skin graft.  If this fails I can get a radial artery free flap.  He explained all the risks, benefits and was able to answer all my questions.
He agrees with the other doctors involved this needs to be done asap, however trying to get this many doctors schedules in sync is difficult, all are willing to cancel a day on their clinic schedule but finding an OR for 12 hours is going to be hard.....and so I wait.  He seems to think it could be possible in the next couple weeks.  The symmetry of the mouth, and eyelid will be later, basically the surgery and healing will take over a year.  
My speech is difficult to understand, it's slurred on some pronunciations, I will have to learn to train my speech again....everyday I look in the mirror and I say in my head "move, I know you can do it, just move, to my eyelid" then again I do this with my mouth.  I try to eat on that side too, it is very difficult I want to work those muscles.  
One of the things I'm having a hard time dealing with is the looks I get from people, I understand why they look.  When I smile it is completely crooked, today a group of kids were with their teachers at Barnes and Noble, one of the kids looked at me and said "what's wrong with that lady's face?" the teacher said "she's smiling at you with her eyes" I walked into the bathroom stall, cried a little then realized ..... I smile with my heart all the time to Recker my grandson who has non-verbal autism.  So many times he stares at me with his eyes and I know we are communicating.  I am going to start a happy, positive thoughts and actions experiment--if anyone wants to do it with me, let me know I have an idea....I had some tears today, but through it all I know I am where I should be right now, and it sounds like it's going to be at least a month.


Anonymous said...

And there are those here in Arizona who will be with you all the way in spirit, Monya.

Anonymous said...

Would love to try your experiment. Your thoughts and faith are so inspiring. There are so many arms around you giving you a hug from Arizona. Stay strong, but keep showing the tears, you deserve them.

Alcyone Coon said...

I hope you get as much out of setting your thoughts down as we do from reading them. You are truly an inspiration. Being able to follow your journey is incredible and a real eye-opener on the strength and compassion involved - from all sides. No wonder you have found such wonderful physicians - after all, it's you, Monya! Blessings to you. Love, Alcyone

Loretta Valenta said...

I love what the teacher told the questioning child -- "she's smiling at you with her eyes." What a tender and kind way to explain.

Prayers continue for you and for your family.


Marie said...

Monya thank you for sharing your experience through your amazing writing. You are strong and touching so many people with your words and strength. I feel honored to share in your journey! Love the teacher's comments, she is a wonderful woman...continue to smile with your eyes. Prayers continue. Know that you need to have this time for you, even though as mom's we will always feel like we should be with our kids. Love you!