What is a Saint ?

When I think of someone as a Saint, my mind immediately goes to Viola Williams, Eric's Mom.  In my eyes she could do no wrong, she actively would seek out the weak and weary and take them into her home for comfort from their worldly worries. Many times, the knock on the door was in the midst of the early morning, or late night, but she never turned anyone away, she loved unconditionally.  Life to her was beautiful, she was raised in humble circumstances, served a mission in Hawaii, and married the love her life Ray Williams. Ray was a postal worker, and she was an accountant.  I never saw them quarrel, they learned the art of laughter and happiness together as they struggled through life's challenges together, I miss them both dearly.   I look to Vi as my ultimate example,  and know without a doubt I will feel her loving arms around me again when I leave this life and start my new journey.

I recently had someone say to me "you are a saint" to that person I said "I am not a Saint, unless you think of a Saint as a sinner who just keeps trying to be better than they were the day before" 

Honestly, I keep tracing the steps of where I've been these past 5 years and cannot comprehend how I've been able to continue on.  I read some of my old blog posts, and I can see the Lord's hand writing those words, He has been with me every step.

With this past trial I am trying to deal with, there are times I feel very vulnerable, it's hard to speak sometimes to people, my eyes tear up.  The aching of this is so real to me, I remember not being able to get the Villain out of my head, it was a day to day struggle, fighting to stay alive.  I have poured out my heart and soul to the Lord at times feeling his loving arms around me, and at times feeling deserted and alone.  The feeling of peace, and knowing His grace remains with me,  has certainly gotten me through some unbearable times.

While talking to Doctor Northfelt, I told him it's hard for me to look in the mirror,  and be ok with what I see.  This is a change even I have to get used to seeing, and right now I am dealing with it my own way.  It's hard to feel attractive for my husband, in my head I wonder if I am sexy to him anymore. Will I be able to live with this face if I have to?  I asked Eric if he is embarrassed to walk with me or hold my hand in public, knowing already what his answer would be I still needed to ask.  This transitional period is hard, very hard.  I'm grateful for Dr. Northfelt, although not all of what I just shared here I shared with him, but he is always so good at listening.

 The people who know me, know my heart and that has not changed. I do feel a sense of loneliness sometimes, when I was going through chemo and radiation I had a support group, people I could talk to, who were either going through it themselves or had already been down that road.  We all had similar feelings and could help each other get through the bad days.  I don't have anyone to talk to, I  don't know anyone who has or is going through this life altering trauma.  I do my best to keep positive, but smiling is hard, because it looks so weird, one side smiles while the other is "normal"  Even when I am happy I catch a glimpse of what I look like when I smile and it is hideous to look at.  So this leaves me in a predicament, do I never smile or laugh again?  No, it does mean that I need to learn to smile with my eyes, and listen with my heart, knowing others who love me don't see that ugly smile they see the heart of the same ole' 'say it like it is' Monya.

 I quit trying to understand why, or how this happened.  I instead have been focusing on happiness, what does happy mean to me?  In December after my 1st ear surgery a dear friend called me, and invited me to a Nerium event, I think the 1st three times I said I'd be there but either forgot, or simply didn't want to know what it was.  I don't remember, but Shelli reminds me of it.  Finally, she invited Eric and I to the Barrett Jackson event, I really didn't want to go, but Eric wanted to get me out of the house.  I was still feeling post surgical pain, so I sat with the girls in Shelli's Nerium booth, I sat and observed (you know how I love to people watch) there were a ton of men coming up and buying this cream, at the time I thought they were probably just coming back because all of these girls are drop dead gorgeous. I observed the interaction these girls had with people, then I was approached by Liz Decker she said "so what do you know about Nerium?" I said "Nothing, but I want in, it's time for me to get out of this cancer world and I heard you mention you are all going to St Louis in April, sign me up for that too, I need a girls trip" I went to St. Louis had an incredible time watching person after person serve and help each other. It really was quite amazing, EVERYONE was so happy.  This was exactly what I needed, get out of my cancer world and start living my life with friends I had excluded because of my diagnosis.  Shortly later I had the emergency surgeries at Mayo Clinic, all those Nerium people came to visit me, that pierced my heart knowing these people are REALLY genuine. Then when I went to Cleveland Clinic for 7 weeks, they were so supportive and kept in touch with me.  I continued to share my thoughts about Nerium with people and even shared enough that I was able to sign up a partner from a bed with my computer.  I gave out Live Happy Magazines to everyone, day by day I could see and feel myself gaining confidence in who I am again.  When I came home, I was welcomed back with open arms and tearful eyes.  We took off again just where I left off, not skipping a beat, or feeling vulnerable at all with them, my face is different, I thought it would be a deterrent and was afraid to face them, this is an amazing anti aging company promoting beauty and looking younger, how in the world can I represent them?  Now that I look back on that, I can see the Lord's hand leading me and guiding me to this place I thought I could never be in again.  With that I have to say "thank you" to all my Nerium Family, who has truly loved me like family.  I may not be moving as quickly as I had originally goaled, I've learned the goal is still the same, the timing is just different, and finally I've learned that those who truly love you will never leave you, this my friends is unconditional love, so Saint I may never be, but trying to be better day by day, yes I can do that.

Botox....seriously?

Yesterday I was at work sitting at my desk, a girl walked up to me and said in a whisper "where did you get your botox done on your forehead" I whispered back with a shhh and finger over my crooked mouth "are you kidding me? I don't have botox she said "then why doesn't your eyebrow move?" "Umm, because I have partial facial paralysis" she then said "Oh you were gone for awhile and I just assumed when I saw you that you must of had some  botox, or plastic surgery done" again I'm laughing inside, but I replied as I took of my reading glasses "look at me, I mean really look at me, does it look like I had plastic surgery? If this is the result of plastic surgery I got ripped off and jipped out"

Wednesday I had an appointment with Dr. Barr's at Mayo Clinic.  I was a little anxious to see him, and to see what his reaction to me would be.  I love him, and was worried he would be upset with me for going to Cleveland Clinic.  I couldn't of been more wrong, he came in with his big smile, arms out reached for a hug and said "as I live and breath, who is this beautiful patient?" Pleased as I could be I jumped up and hugged him back.  I told him I felt like I was HOME at Mayo Clinic, not that there was really anything I didn't like about Cleveland Clinic, but there is a reason Mayo comes in #1 every year with ratings from patients, and medical statistics.  I told him Dr. Haberkamp was great to work with, and that me leaving had nothing to do with him, it was more about the procedure the other doctor proposed at Mayo.  I was just jabbering, he shook his head and said "I was never upset or took it personal" even if that was not really how he felt, he was classy enough to make me believe him. He sat down on the chair in front of me and wanted to hear the whole Cleveland Clinic experience.  I also told him Dr. Haberkamp said he wanted us to tell Dr. Barr's his work on my ear was impeccable.
He examined my ear, and said everything looks good, but we will need to have MRI's a couple times a year on the head. Kathleen came in to visit with me, she is beautiful inside and out, and was so concerned about me, she embraced me as she left the examining room and said "I love you"

  My eye is still the biggest concern now, he agrees but I'm doing all I've been asked to do.  Cleveland Clinic is calling to schedule the next surgery, I told Erin (gastman's PA) I can't think about that right now.  That chapter needs to end, ironically enough I think it's just the beginning of the end.  This is so hard.

Today, Friday I had the privilege of seeing my oncologist Dr. Donald Northfelt.  I think for most cancer patients this is a bitter/sweet appointment to have.  I started to fret and worry last night, my mind has been so pre-occupied lately with all that has happened, I have not let my  brain think of today.  No panic attacks getting off the 3rd floor elevator today, that's progress. Maryann came in to see me, greeted me with a huge hug, we both had tears.  She is incredibly insightful, when I was in Cleveland she said a prayer with me over the phone.  We visited awhile, it felt warm and loving to be with "my" people again--I know both Mayo Clinic campus's like the back of my hand, but today being back was a feeling of reunion, rather than burden.  Anxiously waiting to see Dr. Northfelt, I am so grateful I listened to the spirit when I was led to him for my oncologist, I love him.  He went over my blood work and said it looks good right now.  For me, for right now, as in today, this is who I needed to see. Dr. Northfelt promised to be with me the entire journey and so far, he has, he gets it. Once he was done with his report and examination, he sat down looked at me, no words needed to be said, I could tell by looking in his eye's he could feel my burden was heavy. We talked a bit about the past few months, but didn't hover...we moved on to happier thoughts.  I told him about working with Nerium and how positive the atmosphere is for me.  I also explained to him about the Live Happy Movement trying to get more happiness in the world by spreading my own happy thoughts with others hoping they will also spread the word to BE HAPPY no matter what the circumstance. We had a great visit, I will never be able to articulate the feelings I have of HOPE just because he is who he is, not only a wonderful doctor but knowing he deals with people like me everyday, I always feel like I am his only patient, and that he loves me.

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.

--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.

What a day....

Friday March 6th, 2014

I woke up with blood coming out of my baha implant.  Knowing I have an appointment this morning with Dr. Barr's I got myself ready to go.  The phone rang, it was Mayo Clinic telling me Dr. Barr's was not going to be in the office today he was sick.  I advised them of my bleeding situation,  I'm not sure they knew what to say, she hung up and within a few minutes called back and told me I would be seeing the PA or resident today--I got a little crabby and said "no I will not, I will see an attending or I will not be coming at all"  These issues with my ear are getting on my nerves, I want so badly to get past this.  I made my way to Mayo, when I arrived they quickly took me back to an exam room, Dr. Barr's walked in, and I was surprised to see him, I asked if he was sick because I do not want to be examined unless he has a mask on--He told me he was in a 3rd world country recently doing some pro-bono surgeries and thinks he may have picked something up but not to worry there was only a 50/50 chance I would catch it.
He first took a look at the screw in the back of my head, turning my face towards the TV I could see everything on the big screen--he began to scrape with a scalpel the skin around my baha, watching it was disgusting--I had to close my eyes, for some reason if I don't watch what he is doing it hurts less.
He then looked in my ear, and to my surprise it looked sickly, it doesn't feel like it looks, what is going on? He tried to stick his vacuum down the ear canal and suck out what he could, but he didn't get too far.  He went and got his nurse Kathleen, she took a look and they both agreed, I will be having more surgery--the ear canal is virtually closed so tight he cannot see into the ear drum, but knows it is not healing properly.  The baha is not connecting with the bone like it should, so with both of those problems more surgery is necessary--They both stepped out of the room, and as I stared at the carpet I couldn't help but cry--I just sat there and cried--feeling vulnerable and alone I cried, then quickly wiped those tears away as I heard them coming back in.  I put a smile on my face, bit my tongue and listened partially to what they were telling me, but not wanting to hear what they were telling me--I let my mind wonder off to a better place so that I could process this--then Dr. Barr's said "OK, so you understand right?" "Um, yeah I think so, I come back next week right?" "yes, scheduling will call you"
I left there thinking, "I cannot take one more surgery, I don't want more surgery, seriously? how do I go home and tell my family, my friends and co-workers. how much more of my ear can he take off? what is it going to do if I don't have the surgery and get a 2nd opinion"  So many thoughts running through my head--I feel a migraine coming on--and I have not had one since my surgery, I just told Marian Priday, maybe my migraines,  slurred speech,  and right side numbness had something to do with my ear.  Little did I know my day was about to get even worse, before it got better.
With my mind on this  I drove down Scottsdale road towards a Hotel to meet up with Dr, Northfelt,  my oncologist.  Earlier in the week he called me and asked me for a favor, he is giving a lecture today for 300 general family physicians, about side effects from chemo and radiation.  He asked me to speak about side effects I have personally had.  When I drove up to the entrance of the Hotel he was standing there waiting for me.  I tried to compose myself before getting out of the car, I need to focus on what I'm here for....actually what am I here for?

Love my Doctors-

 Dr. Northfelt hugged me and into a room filled with physicians we went, they introduced him, and he introduced me.  As he began to tell the over filled room of doctors about my diagnosis, I was not prepared to hear what he was saying.  I had an out of body moment as I listened to him announce my stage 3 diagnosis, I could feel an anxiety attack coming on, I could hear my heart beating and hoping no one else could hear it through my microphone.  I was listening to him talk about me, about my life, my breasts, my everything, well at least everything medical that has happened over the last 4 years.  I felt like I was in a tunnel, every word of what he said penetrated deeper into my mind, oh my goodness this happened to me?  It's difficult for me to express the rawness I felt hearing him speak, it was like I wasn't in the room.  I watched as physicians were quickly writing down notes, I thought to myself "what the heck are they writing? do they not understand, do they not see me, am I just a number to them, or a statistic?" "do they not know I have a family? that when I leave here today my name is Monya, I have a husband named Eric, children with names, grandchildren, friends....I'm not a number I'm a person with real feelings"
Now it was my turn, Dr. Northfelt began asking me questions and I was to answer them openly and honestly to a room full of strangers. There were two of us, Linda and I.  Her diagnosis was stage 1, and every question Dr. Northfelt asked she and I had complete opposite answers.
We talked about neuropathy, bone pain, body image and sex.  Then it was question and answer time, as they collected the questions, now I knew what they were all writing.  One of the final questions I was asked was "how has your quality of life changed?" this is my answer to that question with a quiver on my lips and a tear in my eye.  "Pre diagnosis, I thought I was happy, I was living the dream, 4 children, blessed with a husband who worked hard so I could stay home with the children, I had a nice home, car, able to exercise everyday, I seriously thought I was happy. Now today as I sit here with all of you I can tell you without hesitation, money, cars, big homes do not bring happiness, through my journey I have learned who I am, how strong I am, who is important to me, what is important to me, and I can honestly say  I'm the happiest I have ever been in my life right now, I've learned that all of those distractions I thought were so important were mere objects detouring me from the real happiness, all that really matters to me is my family and my doctors, I love them more deeply and purely than I ever thought I could, life is a precious gift that so many take for granted,  Dr. Northfelt promised me he would be with me through every step of my journey, and I believe him" with that being said the lecture came to an end, everyone stood and clapped, that surprised me, is this normal, do they stand and clap at these things?  Several doctors came up to ask me questions, one of them walked up to me and asked me if I have ever tried any natural paths, my first reaction was, "who is this kid?" Seriously he looked like he was 16 years old, I'm assuming just out of school and starting his practice eager to learn.
I'm not sure I said anything  today to help anyone  in that room, however, it did help me listening to my diagnosis, notes from my surgeon and details that I never wanted to hear were exposed. opened up and shared, he can't take it back,  I heard it all.  This is exactly why when Dr. Northfelt asked me in the very beginning if I wanted to know statistics I said "NO" I didn't want to know not because I didn't care about other people, but I needed to focus on myself, what I could do to kill the villain in ME, I promised myself along time ago I would have no regrets, I would do exactly what I was told to do and I have, I feel good about that, I'm firm in my knowledge of what I needed to know, and what I didn't want to know--but now, now I know, now I've heard it, scary? Not really, just an uneasy feeling hearing it all.
Dr. Northfelt walked me out to my car, gave me a hug, I told him how much I love and appreciate all he has done for me.  He thanked me for helping his lecture not be so boring,  as I drove off I couldn't help but be emotional, a few tears streamed down my cheek and onto my shirt, I looked up and without any rain in sight, I saw a beautiful rainbow, a sweet tender mercy from the Lord, that moment gave me some peace and I smiled.  HE really does know what I need, and when I need it.  Little tender mercies are recognized, thank you for lifting me to a higher ground today.