Beauty is from within

I'm not sure where to start.  It's difficult for me to type, but I know I need to record what has happened this past week. I was so happy when Eric came for my surgery, he makes everything better, we have never been apart for this long and it has been hard on both of us. 7 weeks of waiting is a difficult road to ride.  I read my new Live Happy Magazine over and over Knowing I Can Make A
Difference--figuring out how was the hard part.

On July 3rd I arrived at the Cleveland Clinic around 5:30 am, Eric and Diana were with me.  As I paced the floor not wanting anyone to talk to me or touch me, I realized I was having a panic attack and prayed to Heavenly Father to take this pain and anxiety away. He did, and I was soon off to the OR, to get dressed in the hospital gown--It doesn't matter what hospital you're in, the robes are all the same.
Before Eric came back to see me off to surgery, I said several quick prayers asking Heavenly Father to watch over the surgeons hands, and if it be His will that he would allow me to heal from this odd, unexpected trial I was facing.  I wanted to put my head under the pillow and hold it down so I can scream, cry and forge through this quickly.

Frenchy sending me off to surgery

Ready for Surgery with Diana Lents

Eric gave me a kiss on the forehead as they wheeled me into the OR, it was difficult to maintain my composure, tears flowed from my eyes and onto my pillow. Down the hallways of Cleveland Clinic I saw a wall that had 30-50 white coats hanging on hooks, I started to cry again.  Those coats belong to doctors, doctors who will come to the hospital,  take their white coat off the hook and go to work. The tears continued to flow as nurses came up to me asking what they could do for me--I shook my head back and forth,  and watched them walk away not knowing what to do.  I just wanted them to put me out and get going on this surgery. I always look forward to going to my Happy Place in Paris Port Jaune, Eric and I pick wild flowers, ride bikes and have a picnic, leaving the rest of the world and worries behind.  I'm ready to move on with the surgery and hopefully put this chapter to rest,

This picture still brings me to tears, Eric is the
most positive person I know--thank you Frenchie

I woke up in recovery with a lot of pain, I was trying to process where the pain was coming from, as the Nurse said "Mrs. Williams time to wake up, do you know where you are?" "how many fingers am I holding up?" It was then that I realized the surgery was over, my immediate response was to touch my head, to see what damage had been done. It was an 11 hour surgery, lots of anesthesia, blood, and what's this? a neck brace--I'm confused--Eric and Diana came into recovery, Eric told me I was beautiful. I thought  him saying I was beautiful was so sweet. I knew it wasn't true, how can I be beautiful with blood all over me, a swollen head and staples making their way down my skull like a train track?

Just out of surgery

So happy to be with this guy

a kiss from Frenchy

Going back to my room I kept going in and out of consciousness, not only does Cleveland have bumpy roads, the driver taking me back to the room was bumping into walls and doors.  He also asked me what I would like him to sing for me, really? He wanted to sing, I said OK Luther would be good, so he starting singing  Luther Vandross 'Here and Now' I told him it was beautiful, but not to quit his day job. He put his pointer finger to his mouth as if to shhh me.  We arrived at my room, I had a few minutes before Eric and Diana arrived so I cried a little.  When Eric walked in my room I was overwhelmed with immediate love and peace.  With Eric I don't have to say a word and he knows what I'm thinking sure don't want to disappoint him, He has been my rock and my best friend through all of this nonsense.

 On day 2 at the hospital it was a Holiday..the 4th of July..The doctors on my team sent their residents to visit me.  One resident told me he was there in place of my pain doctor and he would put in orders for  my pain medicine.  Within a half hour my pain was slowly rising to a 6, I beeped for the nurse and asked her for pain medicine.  She said she would get it right away, within a few more minutes my pain rose to a level 7, I beeped for the nurse again asking for pain medicine she then told me the resident did not put any orders in for pain medicine.....WHAT??.. by now I was at a level 8 going on 9....the pain was so bad  I started to cry, then I asked the nurse to please call my husband, I just wanted him there. From this point on, I tried to process happy thoughts, happy moments, sometimes it worked sometimes it just didn't.  I stared at the clock not only waiting for the meds but also wanting Eric to be with me, he always seems to make things better.  I was out of breath and crying so hard trying to catch any breath I can the sweet nurse rubbed my arms and legs trying to help, but she too was crying so we were not getting too far.  I tried to sing "Be still my soul" through the gulps of air, then I sang "Come thou fount" trying to tune my heart to Him.  I sang "I feel my Saviors Love"

  My room was right in front of the nurses desk so they could watch me and monitor my pain levels. I was staring at the clock and whimpering loudly, out of control.  I was on my own, I felt deserted, left alone, scared and crying the hardest I ever had in my life.  I was yelling in between cries, "Why have you ignored my pleas and prayers?" I literally felt this was going to be my last day on earth and I would not be able to say good-bye to Eric. I was inspired before I went into this long surgery to write  letters  to Eric and each one of my children.  I paged the nurse and asked her if she had gotten in touch with Eric, she said no,  I asked her to please give him this letter in case I didn't make it.

The other patients in the area where I was were complaining, telling the nurses to get my doctor or move them so they wouldn't have to hear me--I tried so hard to stop crying, the nurses were coming in saying how sorry they were but they couldn't do anything until they heard from the doctor.  I could hear nurses at the station outside of my room, they were laughing and joking with each other.  The cackling of laughter I heard I will never forget.  My desperate cry for help was falling on deaf ears.   After an hour and fifteen minutes the resident came into my room. He walked up to me and said "Why are you crying? It can't hurt that bad." I was covering my mouth, because I knew I must have looked horrible. Then he said something that made me want to kick him "Why are you covering your mouth?" Looking back on this I say "Are you kidding me?"I also recognize he was showing off as the senior resident to the junior residents.  I didn't respond except with a cry and loud scream "Please help me" finally the pain medicine was surging through my veins  with purpose and strength. I handed him my Live Happy Magazine and asked him to read this book with a humble heart. As he walked out of the room I heard the nurse ask "Where have you been for an hour and 15 minutes. we have been paging you?" Arrogantly as possible he turned looked at the nurse and said "I don't have to answer to you."  When I could finally speak without trembling, I didn't want to, I just wanted Eric.  I had been waling and gnashing from side to side for an hour and 15 minutes, it took every bit of energy I had.  My heart was racing but my blood pressure was low.  When Eric arrived all was calm, he had no idea except he asked me "Sweetheart have you been crying?"  Uh--just a bit, and I could see the hurt in his eyes as I told him,  He said no one ever called him, which now in retrospect I realize it  was probably better.  He never gets mad,  but I'm pretty sure this was not going to be acceptable behavior,  I know he would of gone crazy seeing me in that much pain.

Today I had my post op appointments with the surgeons, they told me my ear looks great and everything is healing perfectly, still I am in a lot of pain and I just want to go home.
I was told I can go home, and that I will need to see the doctor once a week for the next few weeks, then at 2 months we will see how the nerve in my face has regenerated. The doctors told me this type of major surgery with nerves takes at least 6-8 months to see results, so patience is going to be my middle name.  Tonight I am exhausted from the appointments, I am grateful for my doctors and I am looking forward to seeing my family.  The happiness I feel in my heart far out weighs the horrible experience I had at the hospital.  I'm going to live happy with the results of my surgery no matter what.
Happiness comes from within and is found in the present moment  by making peace with the past and looking forward to the future.  I believe Eric was right when he said "you are beautiful" I'm learning that beauty is from within us, I choose to be happy and not let the new look define who I am.

I think I look terrible here, but my sister
said, "well you have no wrinkles, Nerium
is working"  

I was able to send those beautiful nurses who took such great care of me the Live Happy Magazine, with a note telling them how grateful I was for them during such a difficult time.

I feel my Savior's Love

 Rainbows, always show up when I need a sign from Heavenly Father
that he here's me.  They are magnificent to me.

Well, I'm here again the night before a major surgery hoping and praying this time I've been away from my family, will prove to be worth it.  Making decisions without Eric or the kids to help me has really been hard to do.  I feel like every hour I need to say a silent prayer to the Lord to bless me with a light, something that can feed my brain with knowledge.  Then I ask to help me be still enough, to hear what He is trying to teach me. 

 I know change, and fears of change, have been clearly on my mind.  I've been walking around with a patch on my right eye, I hope the drops I've put in it night and day along with the patch 22/7 was enough to not have to have a cornea transplant.  The time I've spent here alone has given me time to really reach down and ask some gut wrenching questions. One is, can I live a quality life with my face the way it is right now? Am I confident enough to live the rest of my life having people stare, to here children say to their parents "what is wrong with that ladies face, or eye?" I've had a few even ask me themselves, I just tell them I have a boo boo. 

These past 5 weeks in Cleveland I've gotten inner strength I never thought I had.  I wish I could understand His plan for me.  I've read my scriptures, and Preach My Gospel chapter 6, everyday trying to be lead to a place I need to be, asking and begging Him to teach me what I need to do, so that I can return and live with Him one day. I'm not sure how I'm doing in that area, this is just so darn hard. I know I need to hold on to everything I know to be true and not let go.  Those things I know are so precious to me and can never be taken from me. I've had many spiritual experiences since my 1st surgery at Mayo.  The Lord loves me enough to give me a glimpse into my future, it is beautiful, every time I wake up, I want to go back, but I'm always told "It's not your time, you must return and finish your journey" 

I received a text from a friend today, (I don't want to reveal her name she knows who she is) she said she had been thinking of me but didn't quite know the right words to say. She then said I hope you are able to get the answers your looking for, if it is the Lord's will.  When I read that part, I have not been able to get it off my mind....what is the Lord's will for me? Even I don't know the answer to that. She brought up the fact she has been the caregiver of 2 sons who have been struggling with health issues, she said something else that has stuck in my head...she said she would gladly take their pain on herself so these boys would not have to feel it.  This reminded me of the feelings our Heavenly Father must have when He sees his children struggling, He easily could take our pain away, but for some reason He never does, why is that?  I believe He wants us to learn to rely on Him fully, give Him all we have then sit back and have FAITH, have enough HOPE in Him to make miracles happen, or be strong enough to accept what is being presented to us, and find a way to live a happy life in whatever circumstances we are faced with.

I also received a text from my sweet Haleigh Bear:
H: "mom when are you coming home.?
M:"Good question, it all depends on how well the surgery goes. I'm praying it'll all go great so I can go home this weekend. I'm really scared.
H: We miss you so much, I pray for you every morning and night and I have faith that the surgery will go well. Don't be scared Heavenly Father is always looking over you, and dad will be there.
M; yes I'm looking forward to seeing him, this is the longest we have ever been away from each other.  He's the only one who knows how to calm me when I get those anxiety attacks while I'm waiting for surgery, I just don't want to ever feel that extreme pain from the nerve, ever again"

I wonder if I have kept my promises to Him.  When I was about 14 I promised the Lord if He would get me out of the situation I was in, I would promise to live a life of pure intent, I would share His

Gospel with others, I would study and share with others how to live a happy life, no matter what. I don't think these past 5 years is exactly what I had in mind.  When I look in the mirror, I don't see what He sees.  I know He see's the heart inside me, and He knows how much strength I have, He has shown me I can handle any trial that I face.  He's always been there right beside me, I know when I kneel down to pray to Him, He always answers back, it's not always the answer I want, or the timing is not always when I want it to be.  I truly believe in Miracles, and He is the only one who can make those happen.

Going into this surgery, I feel all alone, even though Eric is here, I feel like I am in a negotiation with the Lord for my life.  The anxiety I am feeling for this surgery is different from what I have felt with other surgeries.  I'm far away from home, and I just have to keep remembering no matter where I am, He is always there just one prayer away.  I feel like this road is getting longer and longer, harder and harder to maintain calm.  My heart is beating in my chest, I don't know if I can ask Him to take that away.  I realize my life is forever changed, and I will never be the same again, I hope I can be a better version of myself, even with my face disfigured, I know who I am, and I know the kind of person I want to be.  As a person who has witnessed what Heaven feels like, I cannot deny what I know to be true.  I know the Lord has a plan for me, I just need to figure out what that is.

Tonight as I lie down to sleep: I feel my Savior's love,  His gentleness enfolds me, and when I kneel to pray my heart is filled with peace, He knows I will follow Him, give all my life to Him,  I feel my Savior's love, the love He freely gives me.

Finally Surgery on the Calendar

Dr. Hamberkamp

This morning I had the opportunity to meet with Dr. Haberkamp for a pre-op appointment and to talk about all the drama yesterday.  He is such a nice man, always happy and most importantly optimistic about reconnecting those nerves in my face.  I guess time will tell, but I still love his positive outlook and optimism.  I truly believe in positive mental attitude, I have been working on my own body to try and get some results.  If I tell my body to do something for long enough I believe my brain will do it.  Sounds crazy, however, being positive and optimistic is better than the opposite, even if no results happen I will still be happy.  Why?  because I choose to be happy.

Dr. Haberkamp looked in my ear and could see some crystallization, which means it's healthy tissue, I have worked really hard to get some healthy tissue with Bacitracin and my $100 bottle of antibiotic. 

Essentially what he said is having the blood is OK, we don't want to lose too much blood and I can't afford to buy new clothes everyday, but it shows him that there is HOPE in the fact that tissue is alive.

Surgery is set for July 3rd.  To keep my ear from bleeding anymore the doctor put a coagulant in my ear, it will stay until surgery. It feels like slime, but I think this is the best my ear has looked in a long time.

That white is the coagulant

 I have labs and I'm assuming more appointments before my surgery, so I will be staying in Cleveland until then.  Counting my blessings today--so happy for too many things to count. 

Dr. McDreamy

Been there, done that....never again....

That little black area is where the source of blood came from

So much for that shirt, bra and undergarments

I felt every bit of that blood trickle down

Ambulance.....? REALLY...?? I wonder how much that will cost me/

I decided to venture out of my hotel and see if I could find some pants, I only brought one suitcase and have run out of clothes.  I thought by now I would of had surgery and been home with my family, so I didn't bring extra anything....really, you can believe it, I'm a woman and didn't pack heavy--my husband should be impressed.
I made it to a Macy's department store and was looking on the sales rack (Eric you would be proud)
Nothing there, but while I was standing there I heard something behind me hit the wall, I turned to look and it was a significant splatter of blood.  Immediately my ear was gushing bright red runny blood, down my neck, I felt a puddle forming in my undergarments but was afraid to look--I grabbed my ear, sure enough it was not stopping there was blood everywhere.  The sales associate took me to the bathroom, sat me on a chair the blood was still gushing out, the blood was saturating the wet towel and I could feel the blood going down my throat as I put my head back.
Macy's called 911...... I asked them not to, because I don't want to pay the bill for an ambulance when I can just drive to Cleveland Clinic.  As soon as the EMT's came and saw inside my ear, they decided for me, and soon I was being lifted up into an ambulance.  I had to tell the history of my ear issues over, and over and over today.  To top it all off when I arrived at the Cleveland Clinic they rolled me into the emergency area and was told to put me in room 13............."No I will not go in room 13, please don't take me in that room, I'll wait in the hallway, but do not take me in there"  wanting me to calm down the EMT asked me why I didn't want to be in that room, I said "I'ts not a good number, it's bad  and I need all the blessings I can get right now"  he laughed at me and rolled me into room 13......YIKES--Soon Diana and her sister who live here came into my room they waited with me until a doctor could come--An ENT came cleaned me up, and called for Dr. Haberkamp however he was deep into a surgery and would not be able to come.  We waited for one of his residents to come, finally he opened the curtain and said "Hello"  I couldn't resist it I replied "Did you have to be so dang cute?"
  he laughed, and as he walked closer I could see he had a hickey on his neck, again I couldn't resist it...."Um, you know I can see that hickey, you're not fooling anyone" he laughed and said "I'll have to talk to my wife about that"

By this time  it had stopped bleeding......this was so scary I had no idea an ear could bleed that much--Originally, the EMT told us he could see the blood seeping from the surgery plug Dr. Haberkamp had put in to cover the nerve. Dr. Cutie Pie said there was a small black area in the bowl are of my ear where the  the blood was coming from. He said since I was seeing my surgeon tomorrow, I could leave and Dr. Haberkamp would assess it tomorrow.   I was so relieved, it was very very scary to feel that amount of blood gushing from my ear and not know what to do.  I just held it, probably a lot like I did when I was a young child, I remember holding it when it hurt.  I thanked the doctor and said have a good day "Dr. McDreamy"  I think he was embarrassed but he smiled.

Besides a migraine, I felt fine when I left the hospital.  I just wanted to go back to the hotel and sleep, I was exhausted.  I did my usual going to bed regimen, I was finally able to lye down and once again the blood started gushing. I remembered Dr. McDreamy told me if it started to bleed again to put some Afrin on a cotton ball and put pressure on it.  I did exactly what the doctor said, and voila' blood flow stopped.  I put some bacitracin on it, covered it with a cotton ball and band aid.....and off to sleep.

Another Day at the Cleveland Clinic

This morning, I called the doctors office as soon as they opened, I was greeted already aware of my situation.  She said Dr, Bernard is working on getting this on the surgery schedule,  bringing three doctors in on the surgery is harder than it sounds.  I received a call to see another doctor on Thursday.  In the earliest time frame I will be having surgery on Tuesday--one more week here.  This hotel is not cheap, it is most definitely convenient, if the hospital or doctors offices call it literally takes me 5 minutes to get there, without having to go outside.  Walking through the hotel, and hospital all I see is doctors in white coats--their everywhere.

It is a bright sunny day today and I want to get out for some fresh air. I do not have a car, I just stay at the hotel waiting for a doctor to call and say "surgery time" Today I was a little disappointed wanting to get this over with, my anxiety level is on high alert.

I spoke with Kathleen from Dr. Barr's office to update her on what is happening here--she was so sweet and reassured me that she and Dr. Barr's only want the best care for me, I let her know I have been praying, friends and family are praying, and I feel good right now about being at the Cleveland Clinic.   She wished me luck and told me to let them know what is happening. That phone call was hard for me I never want to offend or hurt anyone else's feelings and I have a feeling to get a 2nd, 3rd or 4th opinion like I have has got to at least make Dr. Barr's feel bad, and that makes me sad.  However, the most important outcome for me is the doctor who can give me the best results for a long lasting look, every doctor I have spoken to has told me the process Dr. Barr's wants to do is not the best option, it is a great solution for someone who is 80 or older, it's a temporary fix.  This process we are trying to organize here in Cleveland is much more advanced and will give better results in the long run--it will mean more surgeries, but when it's all said and done it will be a better option for me.

Today--no surgery date yet --- more sitting in the hotel waiting--tomorrow I will call the office again, hopefully answers will come tomorrow.  Tonight my legs are hurting, it;s going to be a restless night.

Dream Big

 ☝My goal for today--Please give me the strength to do this ☝

Yesterday was a windy, rainy day here in Cleveland--Diana and I stayed in the condo the entire day waiting for a phone call from one of the referred doctors that Dr. Bernard gave us.

The 1st call came I was told we would be seeing the neurologist at 1:30 tomorrow (today) and be seeing the ENT doctor at 3:30 (today).  A few hours passed and I got another call saying that the neurologist and Dr. Bernard thought it would be best for me to see the ENT doctor first, and then they can assess whether I need to see neurologist.  This makes sense to me, Mayo clinic neurologist had released me from their care for this surgery after many tests they decided they did not need to be involved.  The reason for bringing in the neurologist is because the nerves involved are in the back of my neck at the base of my skull, and they want to make sure there is not skull based infection.  According to the Mayo notes, it's not clear.  So I will see the ENT tomorrow (today) at 3:30.  I am anxious to see him, because I really have so much respect and love for Dr. Barr's I want to see if this ENT say's anything different.

Just so I make myself completely clear, I love Mayo Clinic, I have had the best care there, especially with my cancer treatments, my team of doctors are incredible. When I was volunteering at Banner MD ANDERSON I was grateful for the treatments I got at Mayo Clinic.  These two hospitals do not run their programs at all the same, for me Mayo Clinic is a better choice for me.  One time at MD ANDERSON, we had two patients because of religious beliefs came to Banner MD ANDERSON for radiation because they wanted only women to radiate them.  These ladies were awesome and I loved them however, two weeks in a row there were not enough women there to radiate (they needed 2) and one was on vacation.  Without telling the patient they had me radiate these women, the one female tech that was there went in got the patient set up, and on the other side of the wall was ME and the men techs, they told me exactly what to do with the radiation and I did it--these poor women had no idea what was happening, after I did that a couple of times, I respectfully asked them to not ask me to do it again.  THIS WOULD NEVER HAPPEN AT MAYO CLINIC!! Coming from a cancer patients perspective, if I had known a volunteer at Mayo Clinic had radiated me, I  swear (not litterally) I would would of sued them--no one should be using those radiation machines unless they are educated and trained.  I had the hardest time dealing with that, I couldn't sleep, I wanted to tell someone, but also loved and respected my friends that were radiation techs.  When I was fired from Banner MD Anderson as a VOLUNTEER--it was sad for me, but I kept going back to that time when they had me do that and I realized that was not a volunteer job for me.  Oh and just so everyone who reads this knows Banner MD Anderson--is NOT the same as MD Anderson in Houston TX. The employees get their check from Banner not MD Anderson.  MD Anderson in Houston actually called me after reading some of my blog and asked me if I would be willing to blog for them, as a cancer patient now volunteer.  I chose not to do it because I just didin't have time, but when I talked to this sweet lady in Houston, she reassured me that the Banner hospital uses the name MD Anderson for publicity reasons, they do try to follow protocol similar to MD Anderson in Houston.  This made me feel better, because I have several friends who have gone to MD Anderson in Houston and have been so blessed with the treatment they received.  

 So back to my Mayo docs, Dr. Kreymerman, what can I say?  He knows, his wife knows, my family knows I LOVE HIM, and that love goes far beyond him as a doctor he is a great man--not too many doctors would leave their office and come over the OR to be with a scared patient (me) and hold my hand until I was put under anesthesia, especially when it was not his surgery, he did that for me because he cared, and understood the anxiety I had going into that surgery.  Dr. Magtibay (my gyno oncologist), love, love, love him, he took me from a dark place to a new life, a new beginning.  Dr. Northfelt, I loved him from the day I met him, then was a little upset because I was not seeing him every time I had to go to the breast clinic for follow-ups.  I asked Dr. Kreymerman about him, and he said "if I needed an oncologist for my wife I would choose Dr. Northfelt, he is head of his department and has a lot of administrative things he is responsible for" I requested to see Dr. Northfelt at least once a year, just to make sure we are on the same page with treatments, and because I feel more confidence when I get to see him, I feel like he's not just a "silent partner" every time I see him I do feel reassured that "yes, he is going to be with me to the end of my journey"  Dr. Northfelt has a heart of GOLD, I love him and have learned to understand why he cannot see every patient every time they come for check ups.  I love Maryann Forrett his assistant, she is sweet, kind and compassionate just like Dr. Northfelt, I know I can talk to her about anything.

In 45 minutes I will walk over the Cleveland Clinic and listen to another ENT, get some advice and hopefully have some answers as to how to proceed, compare those with Doctor Barr's proposal and make some decisions....Time for more prayers, my knees are getting caloused.

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 a 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 at times 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 and I believe I would not be true to myself if I did anything else but face this storm and still be standing as it passes.  For the first time in 5 months I am allowing myself to breathe again, to dream again.  I realize this is my journey, my life, my story and I am still writing.  I wish I could go to each and every 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 diagnosis 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, finding out who I can become--taking chances and staying strong.  Tomorrow I have a chance to see a great doctor, I'm takin' this opportunity with the attitude "I deserve this, I deserve to know if there is any other options for me"  I'm not one to want to hurt feelings or make any of my doctors think that I believe that they are anything but great for my prognosis.  However, I was recently told by a great friend who is a physician 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" he said "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, and it will be this way for the rest of my life, I'm thinking I have a lot of years left in me, and I have to believe with all the modern technology there has to 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 am going to 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 the plan my Heavenly Fatter has for me 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 through out 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.

--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.