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 

Cleveland Clinic Day 1

 

TUESDAY, JUNE 3, 2014

Cleveland Clinic Day 1

This is the picture Dr. Barrs took during surgery--the greyish is the graft he did, and it died within 5 days.

Today I spent  4 hours with a specialized doctor at Cleveland Clinic. I was highly impressed with his bedside manner and credentials; however, he had not received any of my reports from the Mayo Clinic. I got them and actually faxed them and emailed them ..... they had nothing, none of my films, path reports, lab report, OR notes--we spent, luckily I had copies of it all with me, but it really was frustrating to have to tell the story all over again and again--The doctor's PA came in to discuss why I was there--she looked at me and didn't seem to have much compassionate--for some reason, I was so frustrated trying to get all my paperwork in order--she said the receptionist who usually brings these referral patients paperwork to them to study before the patient gets there was out of the office, so they had not read anything or seen any pictures from my surgery---I told Diana, I was worried this would happen.

I sat telling my story--the long story of my ear--from the blow to the ear when I was 3 to the current status. I felt like she was looking at me but not listening--it felt like she had no connection with what I was telling her. She left the room to talk to the doctor, and soon he came in, and again I had to tell the story as he typed it into his computer. He seemed concerned for me and could obviously see my face was affected. He made all the routine checkpoints to see the damage to the nerve. Then he explained that the ear needs to have a complete debridement of the ear cavity and canal. He said he could not and would not touch any facial nerve surgery until the ear was clear of all infection and was healed. He explained, and I have agreed with this all along, and so has Eric.....no plastics doctor should be going in during ENT surgery to repair the facial nerves. When he read the reports from Mayo, he was very complimentary of all the doctors I have seen. He mentioned Dr. Kreymerman and Heather and said he likes both of them very much. Dr. Kreymerman trained here at the Cleveland Clinic. It was nice to have a doctor with a connection to some of my doctors at Mayo; for me, it's reassuring. He agrees with Dr. Barrs about the window of opportunity to get any nerve damage a possibility of repairing. However, does not necessarily agree with taking the mussel from my tongue.

I have until April 2014 to have all my healing done from my ear before he can touch anything else. He explained how the process works. Basically, he made an appointment for me on Thursday with an ENT here in Cleveland, then Neurology needs to be involved because of the skull involvement. We asked to see a doctor I was told about that is an ENT--he left the room to get those organized, and I sat in the window seal of his office looking out into the beautiful green trees and grassy area. It was surreal to me. It takes a lot of energy to keep my mind focused on the HAPPINESS I have in my life. I have so much to be grateful for. This place feels right; I know I should be here. I know one of these doctors can help. My eyes started to bubble up with tears as they trickled down my cheeks, finally landing on my arm. I was a mess, and I said to myself, "how did I get here? Why am I here?" (not in Cleveland, but in my life) The doctor came in, and we chatted about my favorite doctor Doctor, Peter Kreymerman, and his PA, Heather Lucas--he said PK is a great man (I've said that for 5 years now, and Heather said he is sweet and compassionate, and an excellent resource for me. He then did a quick assessment of my ear, the routine facial tests, like raising our eyebrow, smiling, etc...he mumbled to himself, "yeah, there is nothing animated about this right side."  He then explained he could not do what I needed to be done on my facial paralysis until I got the ear healed, also that I would have several surgeries to fix my face. I cried; I never call in front of my doctors; I suck it up and do what they say to do. This time, I'm exhausted and starting to feel the burden of this all; my shoulders are heavy with responsibility. I'm glad Diana was there; with her nursing background, she got all the answers to questions I would have never known to ask--one of them is that after the debris is cleaned out and healed, instead of taking a mussel from my tongue (which in his words is old school and does not bring animation back into the face, he takes the mussel from my inner thigh) or another procedure could be to take a nerve from the left side of my face and pull it over the right side, and hope for it to connect.

Within a few minutes, his PA came back in the room and told me she was able to make an appointment with this doctor who specializes in my issues; she said she would try to get me squeezed in tomorrow, but for sure, I have an appointment with him on Thursday, neurology will also be on my itinerary. I began to cry again, Diana teared up, and the PA had nothing to say, but she, too, teared up. I left there feeling like this was a waste of my time; Diana felt very hopeful and even told me the differences between what I heard at Mayo "your right side of your face will never look the same as the left, and you and Eric need to get used to it) Is that this doctor today gave me some HOPE. I'm exhausted and need a good night's sleep; my mind has continually been on this ear problem, and I have no time to think of anything else. Still praying for a miracle.

Just Dream-Just Breath

 

MONDAY, JUNE 2, 2014

Just Dream--Just Breathe

I'm uncovering some strength I've never felt before.  My fears are finally subsiding, and I'm allowing myself to feel vulnerable--Today, I boarded a flight at 5:25 am to face either a storm or tender mercy.

Yesterday, I pleaded with friends and family to join united in prayer and fast for some relief, some answers to come clearly and quickly.  The spirit has a way of sneaking in and penetrating my heart when I am not expecting it.  I could not help but have the peaceful feeling of our Heavenly Father watching over me and listening to every prayer. I know through Him I will be able to endure; I am strong. I would not be true to myself if I did anything but face this storm and still stand as it passes.  For the first time in 5 months, I am allowing myself to breathe and dream again.  I realize this is my journey, life, and story, and I am still writing.  I wish I could go to each person who prayed and prays for me daily--this is what I would say to you--HE LISTENS, AND HE ANSWERS PRAYERS--I LOVE YOU FOR JOINING IN OUR FAMILY PRAYERS.

 It's been so hard to stay strong. This is a feeling I have not felt in such a long time.  Even when I was diagnosed with the VILLAIN, I felt more in control than I do now.  So many times, I have tried to bury my fears, thinking if no one could see my vulnerability, I wouldn't have to feel it if I just ran from it. However, those shadows followed me to where I am now.

Today I've decided it's not about the race or how fast I can go; it's about finding out what's inside of me, who I can become--taking chances and staying strong. Tomorrow, I have a chance to see a great doctor; I'm taking this opportunity with the attitude, "I deserve this. I deserve to know if there are any other options for me" I'm not one to want to hurt feelings or make any of my doctors think they are anything but great for my prognosis.  However, a great physician friend recently told me. Also, he said, "You always say you want to live with NO REGRETS. Do you believe this will be a regret if you don't take it?" I knew the answer before he finished the sentence..." yes, I would regret it" "besides,  any doctor who is upset because you decide to get a 2nd opinion or 20th opinion does not deserve to be your doctor"  I'm not sure if I agree with that last portion, I have been so blessed to have the BEST team of doctors on my side, cheering for me all along the way.  I love my doctors at Mayo Clinic, but when one tells me that my face will not change. It will be this way for the rest of my life. I have a lot of years left in me. I must believe with all the modern technology, there must be a doctor out there who can help, that doctor may not be at the Mayo Clinic in Arizona or even at the Cleveland Clinic, but I know myself well enough to know if I don't take this chance, I will regret it.  It's time for me to start dreaming and breathing again. I feel this fire inside me that needs to be ignited---but I'm not sure how to get it fired up again--I believe this trip to Cleveland Clinic is a good decision--now on to the next step--Meeting 'Doctor Right.'

So, I am looking at tomorrow as a gift, and I will embrace it; I have no fear going into this appointment tomorrow. Every step I take and every storm I endure makes me stronger.  It's time for me to spread my wings and start flying--I know I was not sent to this earth to hide behind every corner, afraid to face my fears; I was meant to embrace the future and teach others how to do the same.  I trust my Heavenly Father's plan and know His arms are around me. He will give me the calm I need for tomorrow.  On the nights like this, when I am trying to sleep and can't, I turn it over to the Lord and ask Him to take this burden once more from my shoulders and allow me to sleep, allow me to rise in the morning, grateful to Him, and say "All I have is yours, all I have is because of your grace and tenderness you have shown me throughout my life"  Now, I will sleep, but not before I say a prayer thanking my Heavenly Father for all the blessings He has bestowed upon me in my lifetime, helping me to see the love and faith of friends and family.

Opposition in all things makes me stronger

SATURDAY, MAY 31, 2014

Opposition in all things makes me a stronger person.

Another week of decisions is not entirely clear; however, changes have been written on my soul. My heart is forever changed, and I will never be the same because of these experiences; sometimes, I wonder if it is better or worse. Mostly because I know when the storms come into my life, they seem to rest and stay ever-entwined in my heart until I figure them out on my own. When I say "on my own," all that means is I must come to a higher mountain, much higher than the hills I've been climbing. So many times, I have been down or in despair, but this time is the worst I have ever experienced and forced me to get my knees calloused as I begged for answers. I have often spent time in my car, crying aloud, wondering if I have been abandoned--no answers have come. Earlier this week, I received a beautiful note from a young girl who has become our second daughter. I was so touched by the wisdom she offered that it brought me to tears, and it was at that moment she needed to hear from me as well as from her. I have not been able to get this conversation out of my head--It's words I've told myself repeatedly, but somehow when I think of them, they don't seem the same. I've indeed seen and felt the truth of the love of our Heavenly Father. He's always there, right there, just waiting to see how in tune I am... not entirely on the same page this week--but the fact is, I am living proof that modern-day miracles happen every day--he hears every prayer, he knows every struggle--it must make Him feel sad or disappointed when my complaints come in handfuls. He thinks, "I've outdone myself with this young lady. She can't even see the possibilities and strength she has" I know this for sure, we can never enjoy the good in our lives unless we have felt the bad or the trials that life often brings. We can't enjoy joy without living through some life-changing events.

I will never deny what I have felt. Some of the experiences I've had this past few weeks are so sacred to me that I will not share them on this blog but will keep them sacred in a draft for my children to read--maybe it will redeem me from my last post--(I cussed) sorry about that--it was real and raw, should have given a disclaimer before you read.

I knew my family, including my sisters, would be nervous when they read my last post--BTW--I'm not planning on killing myself--just at that very moment, I wished it was me, and I was happy for that lady at Mayo Clinic, don't misunderstand and send me emails as to why I shouldn't write or say what I feel--I am no longer amused nor do I want to be entertained by your negative energy. I'll repeat it, please don't read this blog if you are not willing to listen with an open heart--this is not your journey--it's mine--and as the Lord has created us all different, we all have different philosophies of how to deal with life-changing events--this is my way, and I will not apologize for my feelings, and one more thing, I am a Christian woman, who rarely says anything other than what I'm feeling, this does not mean I don't also have to ask for repentance--every day--mainly for the uncomfortable feelings I get when I read your emails of criticism. Let me update you on this week's activities.

I began by getting my records from Mayo Clinic, and we picked them up....\we as in Frenchie's my driver. I am going to the Cleveland Clinic for my 2nd opinion. The doctor is renowned for his facial paralysis reanimation surgery for people like me--when his office received the first batch of records and pictures, they were amazed at what they saw--Debbie was friendly and more than helpful. I need to insert here that my friend Diana Lents is the person who knows how to get this stuff done; not only that, but she is a nurse and will be able to give me my infusions in my PICC line twice a day. If Cleveland Clinic does not work out, have a connection with a doctor from Baylor and Mayo in Rochester. I insisted on Eric staying home--I can keep him updated--I don't want to put him through any more than he should, especially when he needs to work. So now that I have read all my reports from Mayo, I understand more of what is going on. A quick synopsis: when I was three, my eardrum was broken due to a blow to the head. With that trauma came many surgeries as a child. I was told back then I would never get water in my ear--never did--at age 29, I had a mastoidectomy removed. From then on, I was told some repairs were done, and I could not go underwater--the first time I swam was in the Hawaiian ocean when I was 30 years old. Skip forward to now; after going through chemo and radiation, mostly the radiation, the beams stirred up some weird stuff in my ear. I went to see Dr. Barrs a year ago, and he suggested getting the tumor out and doing the Baja Implant. I refused at that time to do it just because I was racking up some surgeries at Mayo, and at that moment, I was not worried about it. Skip to October last year, and my ear began to drain again. I went to see Dr. Barrs it was determined at that point it would not be a promising idea for me to wait for surgery--we started on some anti-biotics to see how they may help; on December 10, Dr. Barrs went in and took out the tumor at that point he took some skin from my upper arm to create a new eardrum because it was completely blown out too. I took a 2 month of medical leave from work--My ear was not healing like we wanted it to. My ear was tested for an infectious disease. I was also given a neurology appointment and consult--nothing. After a couple of months on antibiotics, my ear began to heal; they were pleased with the outcome. Still, one more surgery on the schedule to get all the debris out and re-evaluate was successful. I had to return for another surgery--even after this one, it looked good--Dr. Barrs grafted skin from my upper arm to cover some spots beginning to show bone. All was good; I had one week to wait for my follow-up. Tuesday, the night before my appointment, something popped in the back of my head near my skull; an immense pain took over my body, and I did not want Eric to worry. I went into a different bedroom and hugged a pillow to scream inside. I crawled back into bed next to Eric around 5; I didn't want him to know anything was wrong. I then drove myself to the Mayo Clinic and was admitted immediately. My face looked like it had palsy, no feeling on the right side, and my speech was off-I also could not raise an eyebrow or smile from the right side. This was on a Wednesday; on Friday, I had another surgery--the pictures he showed Eric were nasty--it showed where he had taken more skin to graft around the nerve, but within a few days, it had gone gangrene and partially killed off some of the facial nerves. This is not palsy. Now we are at a deciding point as I visited in length with Dr. Barrs, I didn't like any of his options, and he was open for us to get another opinion, so we are. I realize there is a window of opportunity for nerves; we are asking the family, close friends, and now ward and stake members to pray for me and specifically for me to feel peace with whatever decision we decide is best. I want to include all my decisions with the Lord; he has not let me down yet. With the strength of so many people praying, I KNOW an answer will come, one that I will more than likely have to accept and forward in faith, hoping I can find some peace--My face will never be the same, but it was never perfect before anyway--I'm ready--well I should say I am ready today and hopeful with all the fasting and prayers going out for me--the spirit will strengthen me to another height and again prepare me for what it is the Lord has in store for me, and what I'm learning will help others, even if it gives them a bit of strength to go on for another day, then do it again and again until life becomes a school of learning and a place where they too can pay it forward.    

black dead skin December 10,2013

After 1st surgery in December--impressive staples, huh?

January--looks like an infection.

April 28th Surgery

One week after my last surgery, in for a follow-up, my face has already begun to take on a new look.

THIS IS THE SPECIAL TEXT I RECEIVED THIS WEEK--THANK YOU, I NEEDED IT.

Your kids deal with situations like this very differently. Everyone was a mess. Everyone was crying. We all thought this was it. But your kids are also extreme. They get that from their mom. They are very good at keeping face in a challenging situation like that. I think everyone just thinks there will always be more time with you. That you'll keep fighting because you have for almost 5 years now! We all love you so much; many people are rooting for YOU. There are still so many people who need to hear your story and feel inspired. You gave another chance a few weeks ago; instead of looking at it like another part of you missing or another surgery, think of it as another chance from Heavenly Father. You still get to be here on earth to see more grandkids, see Mexico again, watch your girls get pregnant, see your sisters, see more places with Eric, and sell more Nerium!!. I'm sure there were days 4 years ago when you went through chemo and wanted to die. But can you imagine if your wish was granted then?? You would have missed all of your kid's weddings, Ezra and Paris! I'm sure there were days when you were a little girl and wanted to die. When the pain of your family wasn't going away. But look at your life Monya. Look at all the precious joys you've been given. Life sucks, but with the bad, you get pleasure tenfold. I LOVE YOU. PUT ON YOUR FIGHTING PANTS AND KICK BUTT. I know how hard this is for you. You're handling it all so well. You can do it. Some so many people support you and love you. And who will love you no matter what? You came very close to dying a few weeks ago. So the only thing that will get you through this is focusing on why you were kept here. And the things that keep you going. So many grand babies you don't have yet. So many things with your kids/adopted kids' lives that you can't miss. My heart is so broken that you underwent yet another trial. I want you to be relieved of the pain and misery more than anyone. You're here for a reason; you're still fighting for a reason.

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I WANT MY WIFE BACK

SATURDAY, MAY 24, 2014

--I WANT MY WIFE BACK--

First,  before I start on today's excitement, I have not been able to blog for a while, not because of the neuropathy, but 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 16 -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 grandkids--do something fun--being at the Mayo Clinic AGAIN is not fun--he had a tough time agreeing with this--but I insisted.

Ezra and Recker with Grandad on his birthday

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

Saturday, May 17

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 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 I was in extreme pain while in the hospital. So I started slowly taking myself off them to ensure I was not in any pain. 

 I knew I did not want to go through the pain I had initially felt, so I have taken every precaution to ensure I am OK. The 1st couple of days, I slept hours upon hours--then tried bit by bit to slowly wean 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 through a PICC line in my upper arm. Every morning, Eric administers my medicine through my PICC line; 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 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 is Wednesday, May 21.

Eric and I got up early. He wanted to be with me at this appointment today. First, he had to access my PICC line, which was extremely hard for some reason. Now both sides were clogged up, and Eric was putting all of his weight into it he was able to finally push through, with little blood return. 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 makeup, and bruises were on my face, arms, and hands. I was a mess. 

To walk into Mayo Clinic today was excruciating. The smells hit me from every direction--I could see the people I walked past looking at me as if I had a massive tumor growing out of the side of my face. I thought I should have left my sunglasses on and worn a mask. 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. Barrs." 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 insufficient blood being drawn, she tried one last time in my right hand. Yay, it worked. She was able to get just enough blood.

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. Hence, she had no idea what I had been through these past weeks. 

As we stepped out into the waiting area, something was always going on, but today I was not in the mood. Still, a part of me watched as people came in and out. Today two people stood out in my mind. One was a doctor who arrived in his scrubs and sat down. He was looking around, and our eyes met, and then he was called back for labs. A man and his wife were waiting to see an ENT in the other corner of the room. 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 and 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 too early for lab work. Dr. Barrs came in with his resident Dr. Coursin (Andy). I had been in such a foggy head the second I saw him and remembered seeing him quite often at the hospital. He is a pretty familiar face, one I enjoy seeing; he's quiet yet seems to know his stuff.

I told Dr. Barrs I had taken myself off of all pain medicine--I think he was surprised but mainly wanted me to be honest with him about whether I was feeling the pain or not. I reassured him and Eric that I was not in pain and was trying to de-fog my brain from 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 to take a seat next to Eric. He told me exactly what happened to me during my stay at the Mayo Clinic Hotel (Hospital). Within days, the nerve he covered with a graft of skin became gangrene; in other words, the nerve died. He gave Eric a picture of it; the flesh around it is healthy, but the nerve died. It was black--and is now being covered by packing in my ear.

OK, so what is the next step? Dr. Barrs begins by explaining he has a team of Doctors available to help with surgery on June 03. There were some options. Dr. Barrs explained the minimum was to cover the nerve with a muscle graft and wait. Or go in and graft over the nerve and have another doctor there to do something with the 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 charlie brown cartoon, and the teacher was talking, but my ears were not understanding--waaa waaaa waaa-- I continued to look at Eric and make sure he is taking notes.  

Eric said, "I want my wife back, and I want her to be HAPPY again," Dr. Barrs 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, and we cannot bring something back to life that is dead. You need to start loving your wife 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."  

Dr. Barrs looked at Eric and said, "She needs to learn to love the new Monya. I was fond of the Monya you and I used to know, but I also love the new Monya, but I need you both to understand she will never smile again." Eric asked him if we could have a few minutes alone. When he left the room. Eric and I looked at each other with questions what should we do next? Are we being hasty in making a decision? Actually, just the opposite, we looked at each other and 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. With nerves, I know there is a window of opportunity, and we need to make decisions quickly. However, not today, not now, please. I'm so confused.

 Fighting back the tears, trying again to be BRAVE--I think I have finally gotten to a point where I am ready to say, "Why me?" I've done everything I've been asked to do, all Dr. Kreymerman, Dr. Magtibay, Dr. Northfelt, and now Barrs have asked of me. I have lived a life worthy of feeling joy, I know my tears are not meant as a surrender, but I'm tired. The 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 have preached to my children to live by. I trusted Heavenly Father; why was he abandoning me?  

I believe there are times when life throws us into unexpected storms, and it's at those times we are forced to face our most profound 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 to stand up, be BRAVE, put on my big girl pantie,s 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. Barrs's office, we headed up to the infusion floor. The seventh floor of the hospital is where the chemo is infused. The antibiotics I am being infused with twice a day are very strong and cause my body not to work as well as I am used to--I spent a bit of time in the bathroom several times while waiting to be called. Eric took care of checking me in and getting our beeper. I positioned myself in chairs so we could see the outside mountains, dessert, and sunshine.  

I 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 and even have lunch with them 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. When I close the door on this place, it lets itself back in. For some reason, it enters my life uninvited. It allows me to go, but it finds me again. 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 says, "Hell yeah, I'm ready to. Let's go. It's a party back here?" 

This is not just passing through. This one is BIG. Just as soon as I feel I'm in a good place and can move forward, like I've let this go, it always finds me again. I can't handle it anymore. I wish I could say the tears release my pain, but in so many ways, I feel like I am constantly learning to breathe again and again. This time it's more than tears. It's the sobbing, not wanting to be left alone, I can't handle. I'm sorry this is so real and raw. I know God did not make my body a place to constantly feel this pain. I wonder how long the depression and despair will last. This is 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 pity party, but 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 a patient wearing an oxygen tank.  

It took quite a while before we were called back, but a cute young, well-qualified PCC line technician finally took us back into a room. She could not access it and had to put some medicine in the line and asked us to return in an hour. We went down the elevator. I just wanted some fresh air. I heard a "code blue" at the entrance of Mayo; seriously? Could anything else happen today that would push me over the edge? Right before me, I watched a woman take her last breath. They worked as hard as they could, and I watched and wished it was me. What the 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, and no feeling.

Eric was waiting for me in the cafe. He wanted to grab a bite to eat--none of it looked good, but I tried a 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. I saw Tony Mendez, PA, to Dr. Barrs. He didn't even recognize me.

I've 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 want to throw up every time I try to eat--and it mirrors how I felt going through chemo.  

If I am honest, I would much rather be sitting in front of Dr. Northfelt and having him tell me...these exact words, "your cancer is back"  At least with cancer, it was challenging to go through. Still, the VILLAIN did not win; I hate when people say, "she or he lost their battle to cancer," but 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. I feel this thing with the nerve in my face is not going away--I'm not sure how I can recover from this.

 I feel like I have a heavy load. I can hardly breathe right now--my strength is gone, and I'm weak--I don't think I've ever felt this emptiness 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. Maybe their prayers will be heard. How many times do I need to do this? Eric said softly, "You are beautiful." 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, 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 and looked at the people sitting in the chairs surrounding that area and said to Eric, "I wonder if that guy knows an Angel got her wings today, 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 tough week; looking in the mirror, I am a different person--my face has partial facial paralysis, not bell palsy. I've been told it is permanent and that only 2% of people in the world have it for the same reasons I do. 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 and have them fixed, and the baldness was hard, but it never defined me--it grew back. No, this is much worse. How can I continue in this body looking like this? So many people will say, "but your alive," or like Dr. Barrs told 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.

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Mother's Day 2014

 

WEDNESDAY, MAY 21, 2014

Mother's Day-

I am still in Mayo Hospital for Mother's Day. There may be some typos. As I try to write this it is very painful, and writing is hard. Today, the kids came to see me, and I got a lot of text messages. Today I decided I am going to let my BRAVE come through so my kids can see me. I tried I was trying so hard; I even ate a cupcake. The kids brought me a necklace from sister Kara Kelly, she is always so generous, and I am grateful for the necklace it says BRAVE on it. I am not feeling the BRAVE today--trying, though--

My body is not reacting the way I want it to. I hate hospitals, pain medicine, and how my face looks--but I love how my beautiful children and spouses look--they are so great--I have a great family and have so much to be happy about. 
 Eric brought me the new Live Happy Magazine yesterday he knew I would want to see it.

Love these girls

Beautiful flowers

Ezra

Liz and Danny,friends up for a visit

choose to live happily

my boys--Blake, Eric and Brian

Bonus--2 cupcakes--I wish I could say I ate them--
but I tried both and they were good.

Mastering the Mundane

 

WEDNESDAY, MAY 7, 2014

Mastering the Mundane

It looks nastier than it really is...it broke last night. Today, I'm happy--not for any other reason, but I'm Alive, I'm Free, I'm Me--I will keep waking up, and I was still Monya. Still here, the sun is shining through my bedroom window; I got up and walked out onto the balcony off my bedroom--I remember the day when I could look out there and see the Superstition mountains of Arizona. Although, they are more like hills, comparatively to the huge Mountains in other parts of the world and country. For us born and raised here in Az we love our mountains.

 I realize I am living this continual roller coaster, one month great, and 3 months not so great.  I am always constantly wondering; what am I not getting? What is it that I should be learning here? I've tried to run and hide, I've tried to ignore it, I've even tried to pretend this is just a big joke...jokes on me.

When Blake was in the Dominican Republic and I was enduring the treatments of chemo and radiation, I often times went in his room and knelt to pray, begging and pleading with the Lord to take my pain away, asking why my son had to be gone for so long, I just wanted one more hug from him, thinking back now I remember those days as daily trials, things were happening so quickly I had a ray of HOPE, knowing Blake was given a blessing by President Greer the night before he left for the MTC telling him if he remained obedient the Lord would bless our family, and that I would be here when he returned in 2 years. I thought when Blake came home, the trials would magically end...after all Blake did all he was asked to do. He was obedient, he had the best two years of his life, and our family felt the overwhelming power of the Priesthood and the Holy Ghost with us, we saw miracles happen with my health.   I had it all figured it out, and I prayed thanking Him for bringing my son home safely. Little did I know, my journey was just beginning. Have you ever had a beautiful heart break written and sung by Hilary Weeks? Whenever I hear that song, it is as if it was written fo me.  Every fear I had and every pain I felt I would pray he would take it all away--I never dreamed I would make it through, now that I'm here where I am right now still with sleepless nights and continual fear, I don't think I would ever trade any of that for anything, nothing I say or write can come close to explaining the emotions I have had through this beautiful heartbreak of mine.

He wore those CARS swim trunks all summer

I love this...Blake thank you

dirty like a boy...he knew Boston was #1

Why get a bowl, bonbon lets me eat from the carton...shhh don't tell mom

Recker would live at the ocean, he never tires of it

Just like Blake was, Recker loves the outdoors

school picture--I love it

Today Recker was here, and I watched him swim, no words were spoken I just wanted to watch his happiness, I wanted time to stand still so I could remember every minute every second of his laughter. This little angel boy has brought me such happiness, I just want to squeeze him, I hope he knows I love him so much; I would gladly take away his trial, to hear him say "I love you" to his mom and ad.  Every parent deserves to hear those words, but with Recker he shows his love in so many other ways--I have an open wound on my upper arm where the doctor took skin to graft into my ar.  Today, when Recker was swimming he  scratched his knee and he showed it to me, I blew on it gave him a hug and he was off to jump, splash and play.....when it was time for him to leave he clung to me, not wanting to leave, I bent down to hug him, it was then that he saw the sore on my arm, and in an innocent pure gesture he took my face in his hands stared into my eyes, trying to communicate he lifted his shorts up to show me his scratch, then he kissed my arm. He was trying to show me, we were both scarred with bruises--at that moment I couldn't explain the rush of emotions that came over me, this little boy knew how to enter my heart, fill up my eyes with joyful tears that seemed to flow so easily today. I felt like my heart was bursting to understand, I could not catch my breath enough to be able to say, "I Love You", he kissed my cheek and then my arm. He took me by the hand, and we walked to the car holding hands, I hugged him like it was the last day I would ever see him again.

I gave a testimonial at one of our Nerium meetings, usually, I am composed because I have learned to say when people ask how I am doing, "it couldn't be betterer" I'm grateful when I least expect it, the clouds part and a ray of light reminds me who I am and that God has heard every single prayer today was one of those days I think because I have been so desperate for answers, I learned today I have a purpose, something totally different than what I had expected--answers came clearly.  Standing and having an opportunity to explain my story and my "why" for being involved with this company, I listened to others who spoke before me, and each of us had a different "why" some for financial freedom, some for self-development, single worthy beautiful women sharing their struggles and wanting not only to be self-sufficient but to find fulfillment in helping others find their true potential and happiness.

 When it was my turn to speak, the walls were taken down,  it came from my soul, as I explained my "why" I began to cry (so much for composure), I looked around this room filled with people who are dedicated hard working men and women, my eyes were brought to Crissy Caufman and her sweet husband, I had no idea who they were a few months ago now I include them in my friendship circle I have found, Liz Decker, never knew her before, she's amazing, in the back Danny Jones gave me chills an impressive young man who understands the Atonement, understands life's struggles and teaches me more than he knows, Shelli Richardson who listened to the spirit a few months ago not knowing -- I too was praying for a change to  me.  So, my "why" is different than most in that room, trying to bring me out of a cancer Mayo Clinic-filled life, I've found a way to reconnect with old friends and make new lasting friends if I never become monetarily wealthy being amongst happy uplifting people with integrity helping others is helping to refine me as I go through the bitter and sweet.

 As crazy and strange as it seems, I have found another "why" Recker, he's one of my heroes, he has more love and sweetness in his little 4-year-old body than some 40 years old's I know. Some may not know what a difficult financial burden it can be on a family trying to raise a child with special needs. I would love to provide a home for them where this little guy can run outside and play, a place to call me.  If I can give this my all with Recker in mind, I will be able to achieve that all. I will never give up, I just need to learn how to master the mundane -- showing up, doing my part, and then doing it again the next day--for every no I get a little closer to a yes, so I try not to take it personally and recognize it as a learning experience.  The joy I will feel when those dreams become real is REAL. It is going to happen...So did anyHappenrnthing today, yes, a big YES, nothing thatgiantdidn't already know but some things I have forgotten to tap into...remember two things I am blond, so it takes longer to sink in... haha and,  He always sends His love it has given me HOPE in the darkness and helped me back into the light, I've been blessed to see that the give and take are exactly what we all need to help us become who He wants us to be, as He allows those trials to strengthen us, I'm looking forward to seeing what the next year will bring fo me.  Something extraordinary is about ready to surprise even me; I can do anything with Him on my team.