Smile with your eyes--

FRIDAY, JUNE 13, 2014

Smile with your eyes--

It's been almost 2 weeks since I've been in Cleveland, getting opinion after opinion. I have finally found the surgeons I feel perfect 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 will not only help the look of my face but also the newest procedures in medical technology. I asked all the right questions and, most importantly, how often they performed this procedure. The Doctor I chose said he does this every day, with 98.8% satisfactory results with patients. I really liked him, and he explained all the medical procedures in a way I could understand, just like Dr. Kreymerman used to do. In fact, I've spoken with PK several times about my methods and doctors, and he is 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. A swift whiff of chemo threw me off--that smell was 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 loudspeaker 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 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 incredible 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 passion ---I'm proof of His unconditional love-- I've been praying and searching for answers, I know He has to 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 more significant 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. Many 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 rundown of what he thought was best for my individual situation--halfway 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 reviewed every option; he also typed it out and gave me a copy to process it. Basically, this is what we discussed. I have no proper ear function and a large mastoid bowl with a fibrous base.

The ear is a significant emergency that needs to be taken care of asap; however, believe it or not, my eye is the most critical issue right now--I am in jeopardy of losing my cornea and having to get a cornea transplant. He will put a gold weight in the eyelid, allowing me to blink when my brain says it needs to. 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 bone resection.

All surgeons agree that a sural nerve jump graft is necessary if an excellent frontal nerve stump can be found. In English--- if there is a good nerve they can use, they will do a nerve graft from one side of the face (left) to the right side. It's best to not let this wait because of progressive osteomyelitis changes. If this is the case, they recommend a more straightforward reconstruction 1st, which most likely could be done with an SCM (google that) flap and skin graft. If this fails, I can get a radial artery-free flap. He explained all the risks and 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 thinks it could be possible in the next couple of weeks, and 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 brain again...every day, I look in the mirror and 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 challenging. I want to work those muscles.  

I'm having a hard time dealing with the looks I get from people; I understand why they look. When I smile, it is entirely crooked, today a group of kids were with their teachers at Barnes and Noble, and 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 always smile with my heart at Recker, my grandson, who has non-verbal autism. So many times, he stares at me with his eyes; 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.

It's Not My Time to Go

FRIDAY, JUNE 6, 2014

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. Barrs gave me is reasonable. However, three doctors have told me that taking muscle from my tongue is a temporary fix, and if I was an 80-year-old woman, they might consider that option. What they have seen work the best with someone with 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 plastic part of this surgery could be 6 months or more.

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

Right now, my head is in overdrive, trying to keep up with my health. Sometimes I feel myself slipping; I need the Lord by my side. I must get constant reassurance from the Lord that I am doing what is best for me--I live by every word and 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 nowhere, 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, and I would know exactly what to do. This time it is different. I'm struggling, I sometimes wonder if I've been forgotten, and I sometimes wonder if I am even being listened to, it seems like the words are going to Heaven, but the door is shut. Sometimes I must be told NO to understand the YES, and to realize 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, and 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 tricky. I have no doubt He loves me and always will, through the good and the bad. Fear gives me to 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 His children, and it is hard to comprehend; I guess the only way to come close to understanding 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 was 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 every day? 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?

LABELS: CANCER, CLEVELAND CLINIC, DR BARRS, DR. BERNARD, DR. FRITZ, MIRACLES, PRAYER