Dr. Sal Lettieri Eye Surgery

Tomorrow morning I will enter Mayo Clinic Hospital for my 26th surgery.  I'm having a lot of anxiety with this  upcoming operation.  I forced it so far into the back of my head knowing we were going on a family vacation, suddenly on the plane ride home  it hit me.  I'm not quite sure if it's because I realize what recovery is going to be like or if I am just so done with all of this silly nonsense--it's like groundhog day, over and over again.

I cannot wear my cochlear device it is excruciatingly painful ringing in my head and gives me terrible migraines and dizziness.  However, I've lost most of my hearing in the left ear (the good one) I can't hear my alarm go off in the morning (usually I can hear that thing ring throughout the walls of my home) I can't hear music, people talking, everyday things I have taken for granted.  Although, it is annoying I will have to wait until after this surgery tomorrow with Dr Lettieri hopefully he will be taking the gold weight out of my eye lid placed in at the Cleveland Clinic (wrong size) and being upgraded to Platinum--I like to consider it an upgrade--GOLD to PLATINUM--and I think I will save the Gold Weight--let's just see what Dr. Lettieri thinks about that......I paid for it, why not take it home?  That's the easy part, the more in depth portion of the eye surgery is basically to fix the chronic dry eye--I actually didn't want to know the details about how that is done, Dr. Lettieri likes me to be informed of procedures--I frankly don't care or understand all that doctor jargon, so I told him "I trust you, just do it"  I love and do trust him, I'm in good hands tomorrow.  Heather will be scrubbing in too....bonus for me I love that girl.

Time to get to bed now I have 5 hours before it's time to check in.

Why are you happy?

I was recently asked "why are you happy, and how do you remain happy?" The truth is, I have to work on Happiness every day of my life.  I did not intend on being diagnosed with late stages of breast cancer, or the side effects that followed.  I thought at the time it was a joke,  I was still going to continue training for that Marathon I always wanted to run.  To me, I was happy, after all I had the life I always dreamed of, stay at home mom, room mother for all 4 of my children's classrooms, loved driving the girls to dance and Blake to baseball.  My life was surrounded with good friends, and a wonderful family.

 I have always been a runner, kick boxer, cycler, core trained and weight lifter, this was my life and I loved every second of it. The day I had to listen to a doctor explain to me what type of cancer I had I did not respond, Eric was crying it was such a blur, why was he crying? This is not real, we will get a second opinion and of course I will continue to train because this is not real. Even now when I look back at that day, it amazes me how I responded, no tears, no emotion at all.  Blake was at the airport flying up to Utah to see his girlfriend Lecith, and Kaitlyn was living in Utah going to school and loving life, she had found the man of her dreams and I could not be happier with her choice. Eric called Blake and asked him to come home, he wouldn't, he told Eric to just tell him what was up. When Eric told him, he was angry thinking we knew for awhile and just didn't tell him, I explained to him the doctor had just told me I had no idea....we did not hear from or see Blake for a week, he went to Utah and would not answer his phone.  We then called Kaitlyn to tell her, and she reacted just like I did, no emotion--however, Brian told me later that she was really upset, maybe she thought like I did, this was just a little thing that was going to go away.  Kayla, Jeremy and Haleigh met us at the house and I remember Eric standing at the kitchen sink, the kids and I were sitting at the table, I just said it "I have cancer" immediate silence entered the room.  Kayla started to cry, Eric was still crying, Jeremy was in a sullen mood, not sure how to react, but asked if I wanted a blessing. Haleigh, she was and is my baby girl, this announcement could not have come at a worse time for her, it was a week before her senior year of High School.

Since that day I have had to learn to smile with my eyes, and listen with my heart.  I had no idea what was about to explode in our lives as the Villain took over. The "things" that were so important to me, suddenly were insignificant.  The first 3 years I never went one minute of my life without thinking about the Villain, every appointment, bone scan, MRI, and test that was written out on my Mayo Clinic itinerary gave me anxiety.  I still get anxiety when I step off the elevator onto the 3rd floor of the Mayo Clinic, I can smell the chemo, the sickness is in the air.

Tonight, I just can't sleep my mind is racing, I feel unprepared for this trial I am having now.  I need some calmness in my life.  I just want to fall asleep and be with Eric's mom and Dad, dream of being in a safe place, with no pain, no hurt and in the arms of people who unconditionally love me.  I have to remind myself everyday of the many blessings I have.  I see my reflection in the mirror and want to cry. I don't expect anyone to truly understand.  Now, I have to learn to accept the person I see in the mirror, and remember to smile with my eyes.  I loved Elder Holland's talk about depression, I have read it over and over again. Depression is REAL, if you have ever experienced it, you know what I am talking about.  When Robin Williams took his life recently, so much discussion on how selfish he was.  I know I cannot completely understand his reasons, my heart was with him, how well he hid his depression and made us all laugh, while he was struggling with his own demons.

I don't think a person can actually go through some of the things I have endured and be unchanged.  So I say to the people who feel discouraged and mis understood, have faith,  hold onto the knowledge you have of Hope for a better day. I loved when Elder Holland said "above all, never lose faith in your Father in Heaven, who loves you more than you can ever comprehend" It's amazing to me that the love He has for us never leaves, He will always love us, that love is unconditional.  I so wish I could say I am happy all the time, that simply would not be true, I struggle with it daily, but know it is a choice and it feels better than being depressed.You can wake up everyday and decide to make the most of the life you have been given. It does not  necessarily mean changing your world, but changing the way you look at it.

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.

Back to Work

I made the decision to go back to work, my doctors in Cleveland would of wanted me to wait a bit longer, but I can't sit around.  I look in the mirror and I am still not quite ready to accept what I see, I really thought I was.  Last week I finished my work, it was a difficult transition, my eye continues to be such bothersome issue.  Cleveland Clinic PA told me to massage the lower lid to strengthen the muscle, I have been doing that still it waters constantly to the point of not being able to see out of my right eye. Mayo Clinic says I have chronic dry eye, which is weird since it waters all the time, the are trying to fit me in this week.  Work was really hard, my foot is was so swollen by the end of each day, I have had a hard time getting my shoes on. I tried to spend the weekend elevating it, I don't have a strong education about how nerves all I know is it takes a year for things to truly heal.  If this last surgery did not work, this is what is next.  The will make an incision from my hairline, ear to ear, pull back my face and take the nerve from the left side and attach it to the nerve on the right side, then wait another year.

Being at work I felt vulnerable as I walked into the building, I usually like to smile and greet  people with a happy attitude. Problem a lot of people did not recognize me with my short hair and odd looking face.  I even had someone ask if I gained all my weight while I was gone....Yes I did...I was on 2 different steroids and ballooned up a bit.  I am now off of them and back to my normal eating habits so hopefully I can get back to my normal weight.  I know when others notice, then it must be an obvious change.

I am always amazed at what my brain can retain, and what takes time to recall.  My job at US Airways is in the International Reservations Department, there is a lot of information most people take for granted that they know how to do.  I've realized since being back, how amazing my brain is, reactivating those brain cells and muscles I have not used for a few months is slowly coming back without having to look at my notes.

Personally, I am struggling to keep my spirits up and stay positive. Some of the ways I do this is to continue to read from a good book everyday for 30 minutes...this gives me HOPE in my purpose in life. It is so easy to wonder "why" when that happens, I have to get on my knees and say "thank you for this trial,  I am trying so hard to understand, please give me guidance and strength to know what to do, now that it is done there is not much I can do to change it, but now it is time for reality and for me to live with it, I accept that, but please help me along the way, give those nudges of the spirit when I am bombarded with doubt" 

I marvel at my ignorance, I once thought I had all I could deal with as a youth, and that my Heavenly Father had given me quite a challenge to overcome, and when I finally did and was able to truly forgive and move forward I just knew that was it for me .....  I seriously thought if I could overcome that, I would be left alone for life...no more trials.  I think He really does give us what He knows we can handle, but I believe He is also trying to teach me something through all this.  I had a dream that allowed me to see and was specifically told that I have a purpose here on earth, it's just so hard to grasp what I've been asked to do and not say "why? why me?  I try to believe that I am of infinite worth and that I  should be saying  "why not" Maybe because I know all my faults and know the things I need to work on, I am not a special person, no different than anyone else, it seems the world is filled with people who are struggling.  There is a part of me that wants to negotiate my way out of this one.

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.

Promises not broken

I know without any doubt one day I will be strong enough to believe in this promise.  Right now I am feeling vulnerable.  I am so afraid I have spent a week in Cleveland trying to find a doctor who will take on my case, one in which I was told by two doctors they have never seen during their time as practicing doctors.  I am being fine tuned and my sharp edges are being sanded down.  Heaven has shown me so many miracles....and one thing I know for sure is,  the Lord will not take our pain away, I also believe he could take it away but when he does that we are deprived of blessings we would of never had the opportunity to endure, come closer to the spirit and strengthen our testimony of FAITH and HOPE in Christ.  

One day a few weeks ago I let Recker and Ezra play in my car while I was cleaning it out, they love to just play in the car because when he drive they have to be in their car seats so when bonbon let's them play they are all happiness and smiles.  The next day I was driving and I noticed both Recker and Ezra's feet and hand prints on the windows, I pulled my car over to the side of the road and stared at those prints with the biggest smile on my face--thinking "I want to absorb this moment, those little hand prints are my cute little grandkids...." why did they not look as cute when they were my own children's? Or maybe they were but I just forgot.  I later noticed in my house on one of the mirrors Recker's hand prints all over it, I did not take the windex out--instead I cleaned around it, this little boy has blessed my life more than anyone ever has--I love Ezra too, and I love him just as much, but the connection I have with Ezra is different than the one I have with Recker.  Last week when I was home I had the picc line in my arm, and a wrap around my ear, like a bandaid.  Recker always comes and gives me hugs, but this time he gave me the hug and then a had to inspect my picc line and I tried to explain it was a boo boo and bonbon just needs some medicine.  Then he hugged me again looked at the bandaid on my ear he first looked at it then looked me straight in the eye, as if to say "it will only hurt for a minute" and that fast he had ripped it off my ear and ran as fast he could---NO it didn't hurt, he just hates bandaids and obviously if he doesn't like them he assumed bonbon wouldn't either.  This little Recker boy is 4 and a half, he is still non-verbal, but he and I can communicate with our eyes and our hearts--He has a special bond with our Heavenly Father and I treat him as though he is a typical child, because we do not want him to think we think he less worthy or less loved than anyone else in this family. 

he's my little angel

I know that one day we will understand why some children are born with this special veil surrounding them and protecting them from temptations of the world.  When I look at this picture up above, it always makes me think of Recker, I believe his foot prints will also be next to mine, yes his perfect little foot prints walking next to me and helping me to get where I need to be.

Tomorrow is a big day for me, I am praying the doctor has already cleared his schedule for one day and is able to get me in asap, if not then I will be carried once again on an airplane to my next doctor on the list hoping for an answer.  I have a really good feeling about the Cleveland Clinic, and I know they have already told me my situation is an emergency case.  I realized a long time ago my life will never be the same, it will never be 6 days of exercise for 2-3 hours a day, riding a bike 150 miles a week, lifting weight twice a week and doing kick boxing 3 times a week....I never thought I could give those things up because they had become such a big part of my life, now I realize  my Heavenly Father has a specific plan for me, I'm still not sure what it is, but I want to be the instrument He expects me to be. The way I will accomplish whatever it is I need to get my body healthy again, and I will.  I always seem to forge forward, and I;m able to do it with the FAITH HOPE AND PRAYERS of all my friends and family.  Without them I would not be able to accomplish any of my goals, I don't ever want to let people down or be less than I know I can be, that's just who I am.  Because my life has been spared so many times, it tells me I have more to learn.  I truly believe everything happens for a reason, Heavenly Father is not just going to throw us out to the lions and not have a plan for us--still there are times when I  feel like there is nothing I can do but rely on Him, friends and family to pray for me.  I agreed to come to earth and take a body, and that earth life would be a difficult task at times, I believe when Heavenly Father sees our pain it must hurt him, because He can take it all away, however, if he does that we will not grow and learn and share with others.  My prayer for tonight is to help me sleep, even if I have to cry myself to sleep.  I will wake up in the morning prepared for a good plan from my doctors.  Tomorrow will be a good day, one day closer to feeling the sunshine on my face again.

Cleveland Clinic Day 1

This is the picture Dr. Barr's 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 extremely impressed with him, his bedside manner and his credentials--however, he had not received any of my reports from the Mayo Clinic, I got them and actually faxed them and email 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 paper work 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--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, soon he came in and again I had to tell the story as he typed it into his computer.  He seemed to be concerned for me and could obviously see my face was effected.  He did all the routine check points to see the damage of 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 is clear of all infection, and is healed.  He explained, and I have agreed with this all along, so has Eric.....no plastics doctor should be going in during ENT surgery to do repair of 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. Barr's 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 of 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 and 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 start to bubble up with tears, as they trickle down my cheeks finally landing on my arm I was a mess, 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 ever 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 he said is sweet, compassionate and a great resource for me. He then did a quick assessment of my ear, the routine facial tests, like raise our eyebrow, smile etc.....he mumbled to himself, "yeah there is nothing animated about this right side."  He then explained he cannot do what I need done on my facial paralysis until I get the ear healed, also that I will have several surgeries to fix my face. I cried, I never cry in front of my doctors, I suck it up and do what they say to do.  This time, I'm exhausted and starting feel the burden of this all, my shoulders are heavy with burden. I'm glad Diana was there, with her nursing background she got all the answers to questions I would of 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 feels very hopeful and even said 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 to get a good night sleep, my mind has continually been on this ear problem that I have not had anytime to think of anything else. Still praying for a miracle.

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.

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.

Thanksgiving Medley

Sunday morning November 24th, 2013

Eric and I moved io Gilbert over 26 years ago., we are both natives of Arizona, me from Phoenix and Eric from Mesa. We moved into the 6th ward when Haleigh was only 18 months old, now she is married.  We raised all 4 of our children in Gilbert, everyone of my children were baptized on their birthdays in this ward--6th ward will always be home to me.  I will never forget our 1st Sunday attending this ward, we met in the Val Vista Stake Center building.  Elouise Cluff was our Relief Society President, she came up to me with that big huge smile of hers, put her arms around me and said "You must be sister Williams, let me show you where the Primary and nursery children meet......" I felt special, she already knew who I was, I have to say even my children who are married and gone say there is no ward like the 6th ward.  Bishop Wally Slade welcomed us with open arms and a giving heart. This ward was exactly what I needed at that time in my life. I distinctly remember sister Harbertson bearing testimony, when she spoke it pierced my heart.  One of the most powerful testimonies I have ever heard came from a young adult in this ward, Ally Packard visiting from BYU, her testimony of Christ and his teachings touched me.  I connected with her without her even knowing, she said she was searching for a testimony, her own, separate from parents or teachers,   through her study and prayer she had come to know for herself that HE lives. I could go on forever about the examples of faith and hope in this ward I live in. I have loved every gospel doctrine teacher, Brother Steve Peterson and Brother Stephen Phelps taught me so many lessons about the Savior and the Atonement of Jesus Christ-- I realized this morning I have been in Gilbert longer than I lived with my parents.  I have always had a testimony of Christ, but I would be lying if I said the men and women of the 6th ward haven't helped me to anchor it, keep it burning in my heart.

This morning when I prayed I asked if the Lord would please let my mom and dad see a glimpse into my life now, let them see the woman I have become.  I'm trying so hard to do what is right, live a Christ centered life and make them proud of me, please let them know I really do have a forgiving heart, that I enjoy the simple things in life and because of every trial, bump or bruise I have learned to be a fighter, to be a survivor and to lean on the Lord for guidance.  In other words, I am who I am because of the good and bad I've experienced and will yet experience in my life.  I don't try to fully understand what happens between the period of death and the resurrection but I have to believe we have a chance to redeem ourselves for mistakes we've made, especially those that concern our eternal families.  I have seen the reaction and tole PRIDE takes on a body, physically it can destroy lives, it makes me want to say I'm so sorry to anyone I've ever hurt, my heart has really changed, and I think this is yet another experience I needed in my life--I Will Never Be The Same--

I'm not feeling very good , my ear is pounding, I don't know if I can make it through the meetings today.  I love the Sunday before Thanksgiving, and for the 20 years we have been in this ward I have sang  with the choir--The  Thanksgiving Medley- arranged by Stephen Phelps and Eloise Cluff.  Today, I won't be able to sing, nasty sore throat and pounding ear, does not make for a good combination--

Sunday November 24, 2013 4:30 pm

I decided there was no way I could miss hearing the choir sing or Stephen Phelps play the Thanksgiving Medley--they announced today Stephen Phelps has played this arrangement 32 years in a row in 6th ward, I'm so glad I didn't miss it.  I teared up, like I always do, some because I couldn't sing today and mostly because  no arrangement of music has ever touched me like that one....I love it. 

Mayo Clinic Here I Come

I have been dreading this day, keeping it on the DL from my family.  I know I need to talk about it, but for some reason when I say or write the words out loud they become a fear, and fear is one thing I can live without.  Yes, I had a mini stroke, and another little one while Eric and I were in Mexico, however that last one was because I was not taking my medicine like I should have.  Once I started to take it within 24 hours the slurring of words was gone and I have been fine since.
Tomorrow I am going to Mayo Clinic for an MRI, bone scan, and some other tests, my day will start at 7am and end at 5:00--long day, and the food stinks--I will be changing campuses for all of these appointments--maybe I'll get  to run by and say hi to Dr. PK Peter Kreymerman--I still love him dearly.  His smile will make it a better day.
I do have a little anxiety about stepping on to that dreaded 3 floor--I'm afraid in the state of mind I am right now I will probably need to take some meds with me to calm me down a little.
The thing about Mayo Clinic is that they do not let things just casually go by, oh no they send me an itinerary filled with appointments to remind me of what lurks in my fragile body.
Tomorrow should be interesting, I will be seeing the neurologist and Dr. Barrs the specialist I love, he is kind and sweet, he helps me with my right ear problems.  He will want some answers about whether or not I am going to go forward with the surgery or not.  To be quite frank, I don't really know what to do.  My life is filled with a lot of stress right now, some that believe it or not I am not ready to talk about--especially on this blog.
I again find myself in the last hour trying to determine if my answers are being received because it is what I want for myself or  am getting in the way of the Lord granting me more blessings.  I know I'm not the smartest tool in the shed, precisely why I think the Lord has more for me to learn.  So all I can say right now, Mayo Clinic Here I come.

Love Shouldn't Hurt🚩

For some people who have felt the deep scars of inadequacy after being battered, whether spiritually, physically, verbally or mentally it may take longer to heal and recover, but the truth is when you love or are loved, it should never hurt.  This truth took me many years to figure out.

Being abused as a child leaves open wounds that can take years to remove, and in many cases there open wounds never completely heal, as years pass and abuse continues the victim often times molds into the life they've been accustomed to. In other words, it becomes NORMAL,  the perpetrator is successful, he/she wins the battle.

Constant hyper critical words can totally invalidate or erase the occasional words of affirmation the victim may hear.

EXAMPLE:  I was told I was ugly, too skinny, too stupid and ignored when trying so desperately to be heard and acknowledged as a child/teenager.  As a result of this I went to school everyday believing it was true--So I really was not that great of a student.

I remember a couple of times being validated by teachers I will never forget:
In 1st grade (yes I remember this far back) Mrs. Davis told me the winter tree I had drawn was the "Best" she'd ever seen--
another example was Mrs. Fish, she was my 2nd grade teacher.  We were given a project to draw an insect and label the parts, the anatomy.  I spent hours on it, Mrs. Fish loved it so much she asked if she could keep it and use it for future students to see, she actually wanted to frame it and hang it in her room.  I will never forget that moment.  Those 2 compliments got me through elementary school.

One time in middle school I can remember my mom telling me one day "Monya, you have the great ability to forgive, forget and move on" I really don't remember why, or the context of the entire conversation, all I remember is how it made me feel, she noticed me, something about me she liked.
I remember this so vividly, exactly where I was standing in our living room, and even what I was wearing.  Those words of affirmation, although brief, validated me.  Those words have stayed with me for life.  I absolutely do not blame my mother, now as an adult I realize she was doing the best she could do, and who am I to decide what another person's "best" is?

Even though I never once heard the words "I Love You" until I met Eric, I believe those 3 little words are worthless unless you are able to show it.  So, even if I had heard those words as a child, I think it would of messed me up even more.  A person who smacks their wife or kids around one day, then the next day says "I Love You" does not know what LOVE is, this behavior is painful and confusing..LOVE DOESN'T HURT.

I can truly confess that I can't remember loving myself until I started my cancer journey.  The chronic betrayal I endured for years forced me to stop loving and trusting myself.  Irreversible damage was done---I am a typical "text book" victim of abuse, it is typical for the victims to feel unnecessarily guilty.  My main concern as a child was my mom, if I told her what was happening when she was not home, one of two things could happen:

1. she'd leave him and be forced to suffer through another divorce
or
2. He would kill her, me or my sisters (the textbook threats of a perpetrator)

either way, both of these choices were not an option for me because I would of caused this awful pain my mother would have to endure. I can't believe I actually thought this, as most victims of abuse do.

My biological father Colby, was indulged in drugs and alcohol in the 60's.  My mom was so young and "in love" they were high school sweethearts, his family loved her, he seemed to be "in love" with her and they married at a very young age.  One night in a drunken/drugged rage he hit me up side the head, broke my eardrum and then passed out on the sofa.  When my mother came home from work, she found her 3 years old little  blonde headed girl, sobbing, holding my ear blood running down my arm and she immediately took me to the ER.  From that point on throughout my childhood years I endured many, many surgeries trying to repair the damage, to this day I am deaf in my right ear.   My mother divorced Colby, it was devastating on him and on his family.  They were a large family and loved my mother so much, my aunt told me it was like having a death in the family.  Over the years they tried their hardest to keep a relationship with my sisters and I, but it was  difficult years.  Colby went to prison and remained there until I was at least 18, so honestly I didn't really remember him growing up.  I just remember about the time I was 14 thinking "where is he? why is he not protecting me?" When I was 18 he came back into my life--he scattered those connections with me for years a part, finally one day when I was visiting my grandmother  (his mom) in Eagar Arizona I decided to go visit him in the jail he was in--I drove to see him, and I told him exactly what I thought of him, it was not a pretty sight, anyone within ears distance of a 1/2 mile or so could hear, when I finished it felt to good--It was like I had finally released every negative thought I ever had of him, interesting enough, the issue of my deafness and my ear problem never came up--I was way past all that, it was part of my life and I really was so young I didn't know any difference.  What I did find out, was no matter how much I told him I had forgiven him for that one act of violence, he could never forgive himself for what he had done.  He was a sensitive man when it came to "his girls"  I truly believe he tried so hard to become sober, but when he did, he would call me and the wounds would open up again for him and the drinking would start all over again--sometimes forgiving ourselves is the hardest part of the Atonement of Christ.  It was a difficult process to watch him go through, up to the day he took his last breath he was worried about me and the pain he had caused me--having the knowledge of our Saviors Atonement tells me that he has been forgiven, and has now moved on to dwell in a better place than he did while he was on earth.
In respect to this post, do I think he loved me? Yes, I do, his behavior was random and not perpetual, the drug and alcohol abuse were more powerful, and controlled him to the point of not being physically able to raise three children and be an effective dad.  BIGGEST REGRET OF HIS LIFE.

I know this may sound like a contradiction to everything I just posted about "love not hurting" but there is a difference.  Although, Colby was unable to be an active responsible father in my life, he recognized his faults and asked for forgiveness, admitted to his wrong behavior and yes, he loved me.

The bottom line for me, is that families, fathers, mothers, brothers, sisters, aunts, uncles, grandparents we all say things that HURT--I've have most definitely done it as a mother and wife.  Does this mean I don't love my children or husband? Of course not, however, words can leave a scar that will not wound.  When this happens put your arms around that person tell them you are so sorry, that you love them and would never want to hurt them, and move on.  This is not chronic abusive behavior, this is family life--and not always at it's finest moments--I will never blame my childhood on the mother I am today, I am old enough to know right from wrong and I take responsibility for my own actions.
I am grateful for those lifetime experiences that brought me to where I am today, boy I have so much more to learn, all I can hope is that the next generation will be better than I was.

Mayo Clinic Cancer Symposium

2nd annual Mayo Clinic Symposium was held at the Marriott just a mile or so away from the Phoenix Campus of Mayo Clinic.  I attended again this year, it was good to see my team of doctors there and ready to present information.

Dr. Northfelt, my med/oncologist and myself

Some of the information I learned from the meetings were new to me, some I already knew but this is the reason I like to attend these symposiums so that I can learn all I can about my disease and what the new techniques or statistics are.

I learned that 200,000 new cases per year are reported of breast cancer, the side effects of radiation are some that I am dealing with still. 

Lymphedema ✓

Lung inflammation

Fatigue ✓

Depression and anxiety ✓

Chest wall and or breast tenderness ✓

Breast swelling ✓

Skin burning

I only have 5 out of those 7 side effects, so feel blessed to not have to deal with lung inflammation or burning skin anymore.

I learned that Radical Mastectomy's no longer are performed and have not been performed on breast cancer patients since the 1970's.  They no longer perform these because the surgical procedures have been incredibly advanced since then.  In a radical mastectomy they used to have to take everything including the bone surrounding the area, this left women with horrible battle scars.  I had a bi-lateral mastectomy, both breasts were taken with all surrounding tissue but not bone, leaving surgeons the ability to reconstruct in an easier way, with much better results.

When someone has a lumpectomy they only have a 1.9% of recurrence
single mastectomy 1.1% recurrence and only 0/3% of cancer patients who have a lump in one breast will get another one in the other breast--in the words of Dr. Kreymerman "they are sisters, not twins"
BRCA 1 or 2 mutation only has 30% 10 year recurrence in the other breast.
Only 25% of breast cancer diagnosis are women under the age of 80.

Some great things to come are:
Cancer Vaccines
the studying of tumor clones
DCIS vaccines
Her2 antibodies

One bit of information I thought was interesting, 15% of patients who go through the cancer process will get Post Traumatic Stress Syndrome.  It's as if you have been through a war, the fear and anxiety of the return of the cancer or having to continue to deal with the side effects of cancer treatments can literally put ones body into traumatic stress.

With recurrent patients, 45% of women have treatable anxiety and depression within the 1st 3 months of 2nd diagnosis.  This is not a mountain to climb over,  but more of a terrain to walk through.

Did you know

55% stress over financial problems during treatment
46% cut back on food to able to pay their bills
6% lose their homes and have to relocate
50% are not comfortable talking about any of these symptoms, even to their doctors
50% of patients do not share all of what they are feeling or their fears with caregivers or family
history of abuse, physical, mental or sexual will increase the levels of anxiety and will not be
shared with doctors
most women post treatment will have low sex desire, vaginal dryness and feel embarrassed about asking or talking about it with their doctor.

I was not surprised by the fact that most women do not want to share a lot of intimate details with their doctors, but was reassured knowing I am one of them and it is normal.

I am still waiting to here back from Mayo about my ultra sound, and low white cell count--no news to report.

Negotiations With the Lord

Are we allowed to negotiate with God?  I'm a little fearful of this question, but still want to know.  I remember being 14 years old and begging Heavenly Father during a prayer I was having to please get me out of this situation I was in, and I,  in return, would try my hardest to be good person.  HE DID.

I also pleaded with the Lord when I was diagnosed with cancer,  to please let me live long enough to see my son come home from his mission. HE DID.

Once Blake got home,  I asked again to please let me live long enough to see Haleigh find the love of her life and get married in the Temple, she's engaged to be married in March.

When Eric's mother was alive she told me that she was given a blessing when she was diagnosed with breast cancer,  all she asked was that she please be allowed to see her boys return from missions.  She went into a remission for approximately 14 years, when Kurt,  the youngest boy came home from his mission her cancer came back within a few months and she passed away.

It's been 3 years since I was diagnosed with breast cancer, and 3 years since my 1st negotiations started.  I have a feeling negotiations are going to come to an end.  I promised my family I would make some decisions about moving forward with health issues after the Holidays, and the "Holidays" are coming and going too soon, I'm not ready. However, I did put it on my calendar to make an appointment with my pain doctor at Mayo Clinic --which means its on my calendar to call them, and I will.

I'm making some progress as we wind down this year, and start into 2013.  I have an appointment at the Mayo Clinic on Friday January 4th with my new endocrinologist Dr. Roust. I saw Dr. Magitbay (my gyno oncologist) a couple of weeks ago and he said things look good.  I know it's baby steps towards some answers, but I'm making them.  I also have some tests on the calendar--YAY--can you hear the sarcasm?  My family will be happy.

This time of year brings on a lot of emotions for me,  and has for years.  It used to be because I was not with my mom and sharing the holidays with her, knowing she would be alone, and that she chose to not soften her heart.  Now, I appreciate the Holidays, I love the spirit it brings into my heart.  3 years ago my friends and family put up all my Christmas decorations while I threw up and felt the pain of chemo raging through my body.  I don't think I have given enough attention or appreciation for what Eric and the rest of my family was going through at that time.

 I often times talk to the caregivers where I volunteer,  one common thread that I have noticed is that they feel helpless, often times feeling angry but not exactly knowing who to be angry with or why they are angry.  Recently I received an email from one of our patients caregivers, she wanted to know if it was "normal" to feel the anger she was feeling after the loss of her friend, she wanted to know what she could of done to better serve her friend.  There is no NORMAL to life when you are struck with a diagnosis of cancer.  I have learned from volunteering that more often then not people who are going through this journey, process it completely different than their caregivers.    I'm so grateful I have the opportunity to volunteer, so many people have said to me "why would you want to be around that environment, after all you've been through?" to those people I always smile and say "why wouldn't I?" I'm learning more about myself and my sweet husband (the caregiver) from volunteering then I would of ever learned anywhere else.  I am so thankful for Eric, he was the best caregiver I could of ever had during my treatments, and he continues to be strong and the best cheerleader for me as I visit Mayo Clinic.

So as I ask the question "are we allowed to negotiate with the Lord?" my conclusion is and always has been, we are not in control of our lives, we can make promises and I believe the Lord will keep his promises to us, but life happens, all around us are people who need our attention and need our love, we may not understand why some trials come into our lives, I sure don't,  but I do believe at least for me,  I have learned so much about myself these past few years, I don't want to go back there, however, the experience has softened my heart and helped me to be a more compassionate person, and if you know me well you know this is a great accomplishment for me.  

2013--bring it on--even with that number 13 I detest--

Moving Forward

Surgery was successful, all I remember is going to sleep in the OR on Wednesday and waking up on Monday ha ha.  My days are all off, I  drove all the way to Scottsdale for a doctors appointment I don't have until tomorrow.  I have to admit I loved getting out of my bed and seeing some sunlight.

Today I saw  the Dr. he took out the sutures and the nose brace, but unfortunately for me the stints have to remain up my nostrils for a couple more weeks to give the bones time to heal correctly. I have black and blue around my eyes and cheeks, I've had to control the pain with drugs but am quickly getting off of those. Now I'm dealing with keeping food down, even a few bites of anything. Kayla has been bringing me peanut butter banana smoothies, it may take all day to drink but it tastes good and stays down, so I know I'm getting some protein.

Now isn't that beautiful?

If I'm  completely honest at this very moment I'm feeling a little defeated knowing we have some  serrious decisions to make. Recently I was boo hooing and  venting to a friend, and doing a pretty good job at it too, then she reminded me  about something  my oncologist told me from the beginning.... he said he will not tell me I'm cancer free, but he will be with me until the end! My 1st thought was "until the end.? What the heck does that mean? "then she continued saying "did you ever stop to think that you are NOT here for what YOU still need to learn, but for what people can learn from you?"  I've never thought about this journey of life being for anyone but myself, what am I supposed to be learning has always been my question to myself and in my pleading prayers to the Lord.

I'm not someone with a whole lot of confidence in myself or my abilities to uplift and help others. I know some incredibly talented people, they have worked hard to become musicians, singers, athletes,   cooks,  authors, scrap bookers,  doctors, attorneys. PA's, radiation therapist (I love them)  I could go on and on, the point I'm trying to make is when she said those words to me two things went through my mind 
#1. What a bunch of crap  I have nothing to teach anyone, and if for some reason she's right, I don't want to do it anymore, find someone else to learn from. and then came # 2. Change your prayers. To my dear sweet friend thank you for giving me something new to worry about... Ha ha I love You.

Life Moves Fast

I finally finished the quilt I was making for Dr. Kreymerman's new baby boy Madden.  PK and his wife Rakhi are really special people, the kind of people I am proud to call my friends.

I have only made 4 quilts in my life, Recker,  one for Haleigh last year, one for Dr. Kreymerman's daughter when she was born and now for Madden Kreymerman.  As I  put the finishing touches on it tonight, I could see so many mistakes and imperfections throughout it,  just like my life--this was quilted together with the hope that it would comfort and bring warmth and love to someone I love.  Every hand made stitch on this quilt is a representation of the eternal love I will forever have for this family.

The past few months have been stressful in the Williams home, well I should say in my life.  One thing has led to another and now I am in another sleepless night of worry.... more about that in the end.

2 weeks ago I was diagnosed with Graves Disease, this is an autoimmune disease, discovered in my Thyroid going from hypo to hyper--
One week ago I went to Mayo Clinic for an MRI, CT and PT scan of my neck and head, because I have been having some trouble with my right ear and terrible migraines., the ENT took a look and automatically sent me in for an MRI--Friday Eric, Brian and Kaitlyn decided to drive to Mexico for the weekend, on our way I received 2 phone calls both from Mayo Clinic, the 1st one advising me of some spots they found on my brain, the 2nd call making an appointment for me to see the neurology department, tomorrow I will be go for my 1st visit.  Thursday I will also be going back to Mayo for more testing--the results from my hip bone came back inconclusive--not sure what that means, I will be meeting with my oncologist to get more testing done.
Needless to say, I am a little overwhelmed right now with worry.  I saw a dear friend of mine today and she asked me why I have not been posting much my immediate response was I don't have anything to say ...life is going forward and I have been so happy, trying to get back in the groove of things, I have a new daughter in law, my son is the happiest I have seen him in a very long time, Kaitlyn and Brian moved out and Kayla and Jeremy announced they are having another baby in February.  I am an empty nester--and while Eric thinks it's great I miss my children, I depend on their love and strength even when they tease me as much as they do I love them unconditionally.  Having a clean house does not make up for the noise and love I feel when they are all here.

Panick attack at the BATMAN movie

Last night, at a very last minute decision we decided to go see the Batman movie- Kailtyn, Brian, Blake & Chloe, Eric and I.  It was late and I don't particularly like going to movies anyway, but wanted to get out of the house. 


Even though the theater was still pretty full we were able to get seats up higher but I was in the middle next to Chloe and Eric--immediately I began to feel claustrophobic and a little un-easy as the lights went down--within the the 1st couple minutes of the show I could feel myself leaning towards a panic attack-- checking for the exit doors, watching every person getting in and out of their seats.  Out of the corner of my eye I could see a woman dressed in all black, something hanging from her pants which looked to me to be a gun, immediately I panicked starting breathing really harshly and told Eric I needed to get out of there asap.  I rushed out in to the lobby, pacing trying to get my heart rate to calm down, I was shaking so badly when Kaitlyn came up behind me to see if I was OK I jumped with fear and I think I even scared her a little.  Within a few minutes the woman dressed in black approached me and asked if I was OK, I told her I was fine just needed some air, I noticed the walkie talkie hanging from her pants was not a gun after all, she and I had a little conversation about my panic when I saw her walking up and down the aisles--but asked her to just let me be and I would be OK in a few minutes I just needed some time to get my head back where it should be.  I said a prayer and a few minutes later I walked back into the theater, still not brave enough to walk up to my seat, I stood at the top of the landing leaning against the wall watching both the exit doors and trying to comprehend what was happening on the movie screen--within minutes there was a shooting scene, where innocent people were being killed--I made a mad dash for the exit and back into the lobby.  "What the heck is going on in my head?"    My thoughts continually thinking about all of those innocent people in Aurora Colorado last week who were shot dead while sitting in a theater just like this one watching this exact same movie-- I'm not sure why these things happen in our world, what makes a person do the things they do, but it put enough fear in me, fear that I had no idea even existed in my soul.  When I finally got it together and was brave enough to walk back up to my seat, that is exactly where I wanted to stay, close to Eric-- he held my hand and could feel my entire body shaking, it was paranoia taking over--every time anyone got up from their seat to leave I would swing my head to see who they were and what they were doing--needless to say this movie was the longest movie I have ever seen and could not enjoy it, I was never so happy for a movie to be over.


As we walked out of the theater I was looking in the eyes of every person I could see, not sure what I was hoping to see, but wondering if any of them felt like I did, trying to decipher if any of them had it in them to do what this terrorist did, wondering how the lives of all those who survived that awful night will ever be able to get past it, their lives are forever changed--going to a movie will never be the same--will they ever go to another movie?  and for sure the Batman series will forever bring back those horrible memories for them. I was impressed with Christopher Nolan this past week as he flew to Aurora to be with the families of those effected by this horrible tragedy, this is what he had to say:

"Speaking on behalf of the cast and crew of The Dark Knight Rises, I would like to express our profound sorrow at the senseless tragedy that has befallen the entire Aurora community. I would not presume to know anything about the victims of the shooting but that they were there last night to watch a movie. I believe movies are one of the great American art forms and the shared experience of watching a story unfold on screen is an important and joyful pastime. The movie theatre is my home, and the idea that someone would violate that innocent and hopeful place in such an unbearably savage way is devastating to me. Nothing any of us can say could ever adequately express our feelings for the innocent victims of this appalling crime, but our thoughts are with them and their families."
-Christopher Nolan 

I came home last night opened up my scriptures and started reading anything I could get my hands on about peace-- there were many of those scriptures already marked by me, but one that stood out was saying that the peace makers here on earth will forever have peace in their souls for eternity.  I said my prayers, snuggled up next to Eric and was happy to be in a home safe, and peaceful, at least for the moment.

My visit with Dr. Northfelt

I spent some time at the Mayo Clinic this week--just  routine check ups with Dr. Northfelt.  I had my port accessed by the sweet nurse who has helped me so many times before--she asked about Recker and I asked about her little guy who is now 3--wow how time fly's by.

I had to wait about an hour and half before my next appointment with Maryann, as I waited I could feel my ankle swelling up, the blood was rushing to my ankle making it difficult to sit, when they finally called my name I stood up and just about fainted--right there in the Mayo waiting area--in front of everyone,  I think I scared the nurse, I know it startled me, I heard someone gasp when I grabbed the wall to keep from falling. At that very moment I thought to myself, "are you kidding me Monya? pull it together, you survived cancer for heaven's sake"  a smile came on my face and I very slowly hobbled to the room where I waited for Maryann.  My blood work looks good, no elevations at all, her exact words were "Everything looks normal, you are normal"
So there you have it, I am normal, I love hearing those words.  She asked me about the lower back and hip pain, and I explained the physical therapy did not help, neither did the 2 shots of cortisone I've received since December, Dr. Freeman said it was a misdiagnosis of  bursitis.  Maryann didn't say much more about it, but she did say that Dr. Northfelt was going to come in and see me.  That was a huge surprise, I feel like I have this wonderful oncologist who I never get to see.  When he came in he hugged me and was wearing the tie I bought him for Christmas.  I was soon reminded of how much I love him, he is a good doctor.  For some reason just having those 15 minutes or so to talk to him made me so happy, he knows me and is aware of me.   We talked a little bit about the cancer symposium Mayo Clinic had in January, I told him how great it was and that I hope they will do more of those.  It's really good for women going through the long journey of breast cancer to have the opportunity to be in room filled with cancer survivors and care givers,  it's a time to feel the support and love from not only doctors but more importantly other women going through the same things.  Today, Dr. Northfelt reconfirmed to me that Mayo Clinic is where I need to be.  I called Eric on my way home, happy to report that I got to talk to my oncologist, I told him what a world of good it did for me to see him.

Frustration at Mayo

Mayo, Mayo, Mayo oh how I despise Mayo today--after all my scans and needle pokes I was anticipating some answers today, a diagnosis of my hip pain--NADA
I got my port accessed--blood taken, more blood taken and just for fun one more vile of blood taken.  I then went to see Dr. Freeman who I was hoping would give me some news I could live with.
My labs show some elevations, the MRI shows the spot on my hip bone has grown twice as big as last year at this time, it is NOT bursitis, but possibly the bone is deteriorating ??  I was told to go back to oncology-- Frustrated is an understatement--I'm trying really hard to see the positive in all of this, but just needed to vent a little--OK I'm done--