Monday, April 21, 2014

Sleepless Nights & Rainbows

There is not much to say, I went to Mayo Clinic today, and will be back tomorrow.  For today, my ear has suddenly decided to take a turn for the worse.  Yesterday I woke up with black on my pillow, I thought it might be some dried blood, no such luck--it was fresh and black, but it was also Easter and I wanted to spend a great day with my family.
I felt really dizzy most of the day, had some problems during sacrament concentrating as my ear was pounding in my head like a heart beat.  When I bowed my head during prayer I thought my head was going to explode and the equilibrium was way off when I stood up.  I saw Stephen Phelps on the stand and focused on the fact that I knew he was in pain too...sounds strange, but it was my way at that time of distracting myself.  He is such an inspiration, not many know of the pain he has, yet every week he's there playing the organ so beautifully, his testimony through his music plays directly to my heart every time.
I wore a shirt today that said "Don't forget to Smile" love that shirt--today it helped me to get past the complaining passengers who were upset about their seat assignment or the guy who could not understand why US Airways would not allow him to bring is sheep on board to ride with the rest of the customers---???  !!!  Yeah, those are the calls I get, my friend who sits next to me is always listening to my calls, he draws a big smiley face and tacks it on the wall in front of me--so today I wore that shirt for Frank.
I was able to meet up with my dear friend Jori today, we had an hour or so to visit while we both got manicures, she is still dealing with the loss of her son C.J. as she explained her Easter Sunday my heart was full and I was trying to hold back the tears when she described the day.  I'm pretty sure Heavenly Father knew I could not handle that one--losing a child is not something I want to ever endure, but if I do, Jori will be the one I go to.  She's strong, and has wisdom I could use.
Tonight, I want to be strong like the branches of a tree, when a storm is raging.  Time to get back down on my knees and ask Him to help me be strong like the wind--hoping that wind will push me further up this hill I'm climbing.
I've done all I can do, listened to my doctors, taken my medicine, tried natural path, now it's time, time for me to decide if what I preach I can put to action.   While at the doctor today, the cute resident who is usually there was not seeing me today, I'm not sure if she is in that department anymore.  Today I saw another cute resident, he looked in my ear, didn't say much, left the room to get Dr. Barr's.  When he came in I said while holding out my shirt "don't forget to smile" trying to keep the energy positive,  he said "I hope you can smile" I was sure he was going to tell me all was well in the journey of my ear problems.  Boy was I off, it was actually the opposite.  He brought in Kathleen his nurse to take a look, then he and she sucked out what they could.  They rattled off a bunch of medical terms I'm not aware of, basically what I was told he wants to get this surgery ASAP--when Kathleen mentioned tomorrow--I was a little shocked--I'm not being given any choices?  I guess I've been hoping putting off the inevitable, I thought I would be smarter than the doctor----big mistake---he's made an earthquake shake my soul today.  So much for that "don't forget to smile" shirt.
Am I missing something?  I've been wanting to move out of the shadows and into the sun, taking baby steps, reconnecting with friends I've not had time to see or spend time with in years, being a partner in a company who's core values are exactly what I believe in.  I'm finally comfortable where I am in my life, an occasional visit to Mayo Clinic would  be OK, these weekly visits are annoying me.  Dr. Northfelt can't tell me I'm cancer free, but I've learned to live with that, cope with it, trust in Him.  Today I felt more alone than I have in a very long time.  I had an appointment after Mayo Clinic, when I left there I pulled over my car and cried a river, then said a prayer, listened for an answer--NOTHING !  When I've searched for answers in the past, I've always trusted He will answer back, He's always shown me that I can handle any trial that comes my way, I've always felt Him beside me, but today, today I didn't feel it.  I'm scared, I know he knows the strength I have, I know He understands where my heart is, what is wrong this time?  I feel like I'm being pulled back into that black hole, the one that took me 4 years to crawl out of.  I need my friends, I want to be with them, but I don't ever want them to see me like I was today.  Tomorrow, Mayo Clinic will show up on my caller ID, so many times I want to go back to the days of no cell phones, stay in a place of happiness until I get home and listen to messages from our home phone, what happened to those days?  Tonight, it's time for me to get to sleep, it's quiet here, Eric is asleep I haven't even had time to talk to him today.  We have been so happy working together with something we both believe in, now I'm supposed to do what? These surgeries will put me so far behind my goals--but for now, I'm going to bed, hopefully sleeping until 4:30 when I will rise up and start my day again.  I said "I will not have another surgery, no more I'm done, it's time to let it go and let  the Lord do what he thinks is best"  I guess taking the rain with the sunshine, is the only way I will get to see the rainbows.

Friday, April 18, 2014


I was contacted by Dr. Compton, a few weeks ago via email and asked if I would be willing to speak to her eager young students at ASU about my journey with cancer.  I was terrified to do it, I can't imagine what I could say or do to help these students who are interested in medicine--I agreed to do it, I was listening to my heart on this request.
Gratefully I did listen to the still small peaceful voice inside of me and said yes.  Yesterday was the day, I really had nothing prepared, every time I started to write notes it was silly, I thought "why am I writing anything down? this is my life, I've lived it, I've felt it, and I'm surviving it"  Eric, being the public speaker said to me "you need to write some bullet points of what you want to cover in case you forget".....I did, but only had to refer to them one time and that was to  quote something I had written on my blog about a night I was  desperate for some relief.
I actually loved being able to speak with these students and Dr. Compton.  I did have a hiccup, my slide show that I thought was in order of dates was not--so it made it difficult to  show them my journey through a power point with pictures from my blog and FB.  When I realized this was not going to work I did the best I could and spoke from my heart.
I never thought I would be able to speak for an hour and 15 minutes, but I did it--I saw one student asleep so pretty sure what I had to say did not resignate with all of them.  Eric came to support me, and my son in law Brian happened to be on campus he too came to support me, it was good to have them there--Brian is always so good about going out of his way for things like this, I love him for so many things, this is just another.
Just a note about Dr. Compton, she is a lovely beautiful woman inside and out.  Those students hopefully, already know what a gem of a women she is, in addition to being a great Doctor, mentor and instructor.  I felt at peace, I felt strong and most of all I felt BRAVE.

Dr. Compton and I.  She is so gracious and kind

Some of the students--the girls are sisters from the Ivory Coast...One just got accepted to Medical School the other headed off for a fellowship at Harvard.  Full Scholarship, such smart lovely girls. These are our future Doctors

Eric loved speaking with them in French

Monday, April 14, 2014

Never Give Up

I have to remind myself of this daily

Oh how many times I've heard those words...."Never give up" but today never have those words resignated with my soul as they did today.  I've been dealing with this ear issue for over a year now, I said after my last surgery "no more, I'm done, I can't do it anymore"
On December 10th 2013 I went under the knife again, my time has been occupied with Mayo Clinic for over 4 years.  I have wonderful family and friends who have supported, prayed, fasted and served me, most of them do it with no recognition only pure intent of a good heart.
With so much time being dedicated to Mayo Clinic, doctors, MRI's, CAT scans, Bone scans, blood tests---etc..the list goes on and on.  I have done everything my doctors have told me to do, I have no regrets.  My doctors have become my best friends, and Mayo Clinic the 2nd home I never saw coming.
I love each and everyone of the doctors on my team....but I need a life....outside of Mayo Clinic.  I made the decision NO MORE SURGERY, no more putting bandaids on things.  I missed a few appointment the last couple of weeks, and honestly can say I didn't care a bit.  I'm tired, I'm simply exhausted.
In January I was approached by a dear friend who I have not had enough time with, but who has always stayed steady in checking in on me.  Shelli asked me if I'd like two tickets to Barrett Jackson, Eric in his wisdom said "let's go, it's time to get you out of this house" I have to admit I was feeling a little vulnerable with my ear exposed, worrying I would be bumped or  touched during the rush of people, still we went.
When we arrived Eric and I were greeted by Shelli, she took me to a booth where a few of other old time friends were working, and anti aging skin product called Nerium AD.  I sat in the booth, while Eric and Mark (Shelli's husband) strolled around looking at all the awesome cars. I sat and listened 1/2 way there and 1/2 way in another world--I saw all of these people, some my close friends who I have not seen for so long, they were all so happy.  Shelli asked me several times if I was OK, and I said I was fine, just watching them..she said to me "I'd really like to spend some time with you, and I have the perfect avenue to make that happen"  My mind was telling me "no, I'll just disappoint you, I can't fit this into my schedule" but my heart was saying "Mayo is not your home, it's time to reclaim your life"
I've been so occupied thinking about dying, I've forgotten to Live.  I handed her my credit card with no hesitation, signed up for a new life with Nerium, bought my ticket to a national conference in St. Louis then went home.
I had no idea what I'd just got handed--a Tender Mercy--at the time it was an impulse, but one that I felt good about, and I've been really good at knowing what is best for me, I listened with my heart this time.
Now I recognize the Lord's intervention once again, HE knows what I can handle, and on that day, January 17th, my little brother's birthday--I was handed another tender mercy.
I have still continued to say "I cannot handle any more surgery" I've been meeting with Shelli every week, and now my circle of friends has grown by 12,000 plus people.
As I sat listening to a talk on Friday afternoon, taking notes, busily listening and laughing with my friends, the speaker said 3 little words that popped me right back into reality--Mayo reality--those three words were "Never give up" it was as if the spirit was whispering to my heart, the tears bubbled up and flowed down my cheeks--I hurried  to make a mad dash to the women's restroom, hoping  no one would notice my emotional tears--I didn't want to bring them down off their high adrenaline rush. I sat in a bathroom stall with the door shut and the toilet seat down, staring at the purple doors, counting the tiles on the dirty floor--trying to compose myself--I did what I've done a million times--I prayed, yes I prayed in a purple painted, dirty floor, public bathroom.  Usually it's in the most random places and when I least expect it that the tears flow--a memory--a song-and in this case 3 words NEVER GIVE UP--I'm not giving up, I'm just reaching for something that inevidably in my mind is never going to happen--I am never going to be done fighting for my life--I feel like I fight these battles every other month, but will eventually lose the war.
 The noise of all the women sharing their happiness, spreading their joy with each other, suddenly left while I spoke to God--asking him, no begging him to 1st help me dry these eye's so no one would know--and 2nd to give me an answer, any answer, just please tell me what I'm supposed to do, what am supposed to be learning here?  Suddenly all the beautiful chatter of those women slowly began to be heard--I sat and cried a bit more, then I stood up with my shoulders squared and head held high, I said "I can do this" I put on my big girl panties, and decided even if I'm never going to be given those 4 little words I've been dying to hear "you are cancer free" I'm going to make time to clear my mind of cancer, step forward with confidence and spread some happiness, not only for me but for my future legacy.  I just needed that moment to just cry, cry with no one watching but my Heavenly Father--and I know it's hard for him to see, but for that moment I needed no one to ask me why I was crying, I just needed to let those emotions out.  I've been forced to face a deep pain, physically, spiritually and mentally--I've been forced to face a villain and there's nothing I can do but just get it out once in awhile--I know this pain is not going away anytime soon--but I need not to be asked when I'm going to stop crying, or why I'm crying--sometimes it just happens.  Life for a cancer patient is just that way, and I know one day all this will taken away, life on the other side is going to be a place I won't feel this pain--I've felt so much joy in my life and these tears are not me surrendering to anything, it's just something I need to do every now and again.  I'm not as strong as I sometimes think I am.
I truly believe in these words "He never said it would be easy, He said it would be worth it"  For now I am reclaiming my life, spending more time with friends I have not seen for so long, and Shelli was absolutely right when she told me Nerium is the way for me to get away from my cancer world. I've had plenty of people ask me what my "why" is for getting involved with Nerium or any other business with all I have going on, and for the fact that my husband makes enough money for me to go and do whatever I want--to those people I say this "the Lord has been tenderly watching over me, giving me his sweet grace and love all along the way, he takes my doubt away and replaces it with truth, Nerium is just the avenue to get me to a better place in my life"  I have also been asked by several blog advertisement companies telling me recently my blog has had over 4 million hits, if I would like to advertise and make money from every click on my blog--I have now turned them down for the 3rd time, I finally added a button for Nerium but the response was "but you could be making so much money" in return my response was "this is a sacred place where I can go and not have distractions--I appreciate the offers, but I only have this blog to express myself openly and honestly, I will not give in to advertising for a few extra bucks.  I did not choose to be a part of the Nerium family for money--and after this conference I know why, I know why I was drawn to this company, it was an answer to prayer.  I sold my wedding business not feeling like I could commit to brides, not knowing in 3 months what will happen with my health.  I honestly feel like being with positive happy people, taking me to a place where my heart can heal, my soul can soar while helping others reach their potential--I've been given a gift by Shelli Richardson, one I am feeling satisfaction, working with a company who believes in giving 10% of all earnings to a church or organization in need,  a company that is more about self development than it is about money--I cannot even begin to explain the fullness in my heart for this opportunity--I will no longer talk about Nerium, and do not want this to be an advertisement for them.
So tomorrow I will once again be headed to Mayo Clinic--being asked again about having another procedure--at this point tonight I am not sure what I will say, I am going to not commit to anything, I will listen with my heart.

Walk With Me

I've had another emotionally overwhelming week.  I'm sitting on my bed rubbing medicine over and around the screw on the bone behind my ear, hoping it's enough, hoping when I go to Mayo Clinic tomorrow the implant has done it's job and my skin has adhered to the bone around it enough for me to have the baha placed over the screw and finally I will have some hearing.  My doctor is out of town so I will be seeing his resident, my ear is infected and has not gotten better, one day it will look green and drip constantly, the next day it will look like black mold is growing in it.  
I believe that people come into our lives for a reason, nothing is left to fate.  
The above was written a couple of weeks ago:
I went back to Mayo Clinic, was able to see Dr. Barr's resident.  She did a full examination, cleaned out the ear, pulled some dead black skin from the inner ear, they now have me using no antibiotic but asked me to rub a small amount of ointment just on the inside of the ear. I've been faithfully following directions. Tomorrow I will see the resident again--hopefully some good news.

Sunday, March 23, 2014

Even the Bravest have moments of Fear....

This has been an emotional week for me.  I had several restless nights, pleading with the Lord to help me sleep, my mind has been racing I needed His arms, He always calms me when I allow the spirit to speak to me with a feeling of  peace.  I've been allowed to see the faces of Eric's mom and dad, I've been blessed to speak with them in dreams, it has been so real, when I awake I'm upset because I want to stay there.  There is no one person except for Viola Williams who has ever put me at ease when I've needed it.  Oh how I look forward to the day when my physical body will leave this earth and join with them--they are my serenity in a world that sometimes feels empty and lonely.

I wish so badly I could talk to Vi, I trust the Lord's plan for me but sometimes it leaves me shaking and wondering if I am getting in the way of allowing myself to let go.  I'm grateful for the times when I can serve others so to keep my brain in "compassion mode".

I never thought I would have to make decisions for myself that if made incorrectly could lead me right back where I started.  I need rescuing, I don't want anymore surgeries.  Seeing my doctor Monday was not a pleasant appointment, I cried on the way home, and then felt guilty for doing it.  I keep thinking even the bravest of people have got to have moments of fear....right?  These will be my 12th and 13th surgeries I have had at Mayo Clinic within 4 years--when does it end, when is it enough?

This week I received emails from several Doctors asking me to come and speak to young new doctors, they all started the email saying they have read parts of my blog....not knowing how to respond, I put them off for now.  Except for one, she seemed sincere to want to help these young pre-med students at ASU to hear a cancer patients perspective, show the human side of what actually goes through a cancer patients head as they conquer each day, inch by inch trying to eliminate the negative and concentrate on the positive.  I spoke with her on the phone Friday, and will be speaking at ASU in April.

I had my whole life mapped out, I was content with my life, then when the VILLAIN invaded, there was this huge mountain I had to climb, I tried in the beginning to find ways around it, but soon found there was no where to go but uphill, a hard difficult hill.  I was broken hearted when I started to climb it, I still have not reached the top of that mountain, I've prayed many times for Him to take it all away, I've seen miracles along the way, miracles I never thought I would or could endure.

 I would never trade the sleepless nights, or the grace He has bestowed upon me.  I don't think I would of ever recognized those miracles, or rainbows if I had not gone through what I've been going through.  Yes, I have tears, yes I have doubt at times, but ultimately this has truly been a trial I would never change.  Every bit of fear, doubt and pain I've felt has been a testimony builder.  I still don't know why, I question if my heart  or body can take anymore--I have taken the rain with the sunshine along this journey, not always seeing a rainbow-but on those days when I was blessed with those tender mercies, it gave me strength to keep climbing.  I wonder what the view looks like from the top of that mountain......?

CJ Udall's Funeral (celebration of life)

It's been a long week, I have tried to keep my thoughts and energy towards Dwight and Jori.  The Udall family has seen miracles happen in their lives this week.  Tender mercies from the Lord as they have been processing the death of their youngest son CJ.  Last night Dwight and Jori held a celebration in honor of CJ.  The LDS religion believes in celebrating life, not focusing on death.
What a great way to honor CJ, he touched so many lives... celebrate what he was able to accomplish in his 11 years of life on this earth.

We believe he came to earth to get his body, his spirit was perfect in every way and he is and has been protected by the spirit of God as he has lead his life with joy, compassion and spread his love to all he met.  Some have said "why, if he is protected by Heavenly Father, would HE choose to take him now?" There are no answers for that, but I believe Jori and Dwight will have the honor as they live righteously to be with him again.

Listening to Jori  tell of CJ's life story was an incredible act of service she rendered, one that I am not sure I could do.  In fact I said to Eric "all I can think of is our little Recker, who will give his life story?" I loved the words Dwight shared with the congregation, the word Advocate is sincerely a perfect word to describe a parent with a special disability.  Especially when a child is non-verbal and wants so badly to communicate.  The spirit was with me today, as I sat and listened to this sweet family spread happiness and give meaning to CJ and the life he lived.

The memory of CJ's life will forever live on.  I know a couple of mothers who have lost a child early in their life, however, I have sat back and watched them blossom into loving inspirational people helping those around them to process in their own way.

Tiffany Check and her husband are one of the couples I know who have not lost the memory of their sweet daughter, but who are doing their best to live strong, experience tender mercies and recognize those blessings and feelings of her spirit through the Holy Ghost testifying to them.....they will see their sweet daughter again, she will have a perfect body, a perfect mind and will teach them more than they can ever teach her.  I also feel this will be the same with Dwight and Jori.

Tuesday, March 18, 2014

CJ Udall

Mesa mom says son died trying to save his dog - WFSB 3 Connecticut


I've been so proud of Jori and Dwight, my heart aches for them, but spending time with them this week has been such a spiritual experience for me.  My testimony of the Savior and His love for all of His children has been re-confirmed.  This sweet little angel boy touched more lives than he ever knew, it was simple for him he loved people unconditionally.  Just as our Savior does  Oh how I wish I had that kind of love for everyone I come in contact with.

The last couple of days all I can think of is CJ.   There was a time when I was a little girl I tried so hard to touch the stars, I remember laying on the grass in our front yard with my hands stretched as high as I could trying to grasp something, anything I could tangibly touch.  There were times at church I squirmed in my seat trying hard to concentrate on what my primary teacher was trying to teach me.  The older I got, not much changed, except I lived with a quiet ache trying to reach for a truth, desperate to discover something that has always been just out of my reach.  It seemed that Linda and Jami knew what the truth was, I remember one night praying,  a stirring in my heart told me, the knowledge is still yet to come.  Once I felt that special feeling I never wanted to be without it.

Today, as I was remembering those long past days I realized everything I have been learning in this school of life is leading me up to what Heaven is for.

C J is now learning, he is in a school, a Heavenly school, gaining knowledge none of us have, sharing, smiling and finally home where he belongs.  Sometimes we are so desperate to learn it all now, but some of the knowledge is saved, saved for another journey a journey we will gladly take with our Heavenly Family.

Saturday, March 15, 2014

CJ Udall-perfect body, perfect mind

Saturday March 15, 2014

What started out to be a beautiful sunny spring day, ended in being a tragic yet spiritual experience for me.  I was in a meeting when I got a text from Kayla saying "Have you talked to Jori? is CJ OK or what is going on?"  "why?" was my reply she said "He's been missing and they pulled his dog out of a canal"  Having no Internet connection I panicked when I text Jori and did not hear back (she always texts back) I left the meeting went home to get more information, then headed straight to Jori and Dwight's home.  When I arrived there were police cars, many many other cars and my heart was pounding as I walked up to her home.  Jori and I have been friends for over 20 years and her husband Dwight and Eric grew up together.  I should also insert here that Eric dated Jori, right before dating me....(long story not pertained to this)
I was greeted by Jori's brother Scott, and Dwight's brother Kent Udall.  It was now that I realized CJ had drown in the canal behind their home.  Last night Jori had a camp out at her home with all the scouts who live in her area.  This morning all the kids were in the pin with the goats laughing and having a great time, when Jori realized CJ was missing--Dwight went out towards Power road looking and yelling for him, Ben, Jori's other son went toward the canal, he yelled for his dad when he found CJ's dog.  Dwight and Jori ran to the canal, Jori hit her knees "yelling, I just want to start the day over, please just let it start over again"  This broke my heart when Kent told me this part.
Jori and I were just at lunch 2 weeks ago talking about how much Recker loves water, and the fear I have of not having a fence around our pool.  This conversation was drowning my thoughts as I walked in to see Jori--she immediately grabbed me and hugged me, I didn't want to cry, I wanted to be strong for her as she sobbed in my arms.  All I could say was "I'm so sorry, Jori, I'm so sorry"  I couldn't help but sob with her.
With the police and investigators still handing around, Jori pulled everyone into her living room, tried her very hardest to be strong and talk to everyone, she explained about the Priesthood and the blessings that come from receiving a Priesthood blessing, she eloquently spoke about CJ, about his testimony, his love for nature, scouting and his family--she invited everyone in the room to stay as her brother gave her a Priesthood blessing. Then Dwight received a blessing from his father Jess Udall.  Dwight then gave his son's Ben and Josh a blessing, I couldn't help but think about when my brother Lance died, I wish I had been offered a Priesthood blessing.  What a difference that could of made in my life as I dealt with his death.  As Dwight gave Ben the blessing, I glanced up at a picture in their home it read We Tend To Seek For Happiness --- a solemn peace came over me, and I cried harder knowing CJ is with his grandfather Carvel Jackson who he is named after--what a grand reunion they must be having--through the sounds of sniffling and tears I could feel this sweet spirit testify to me that HE LIVES -- and now CJ is in a perfect place, with a perfect body.  Dwight talked to us about the day CJ was born, the nurse brought the baby to him and placed him in his arms, even before Jori knew Dwight could see CJ had down sydrome, but as clear as day he heard a voice tell him, "CJ is here for a purpose, protect and watch out for him until the day HE returns to his father in Heaven" he said those words helped him to process what was going to be a life of watching a young boy grow up with challenges 
Jori and Dwight raised CJ as if he were just like any typical child, CJ didn't know he had down syndrome.  Just a couple of weeks ago, Jori told me they were at the Cultural Celebration watching Ben practice, when a girl with down syndrome came up to CJ and said Hi, but CJ snubbed her--Jori said she had to have a talk with him about "being nice to the down syndrome kids" CJ didn't like the idea of being nice to a girl, not to mention  one with down syndrome.  I got a kick out of that story, and told Jori she has done such a great job of raising him to be tolerant of everyone.  He knew nothing but compassion and love for everyone he came in contact with. 
My heart aches for them, tonight they will not sleep, right now it's busy, people bringing food, helping fill the void, but when they all leave and the smoke settles I worry about Jori.  CJ was her life, she could not have a conversation without bringing up CJ--she was so proud of him, she loved her time with him, she has become very involved in the scouting world, helping CJ and Ben to achieve their merit badges, and Ben his eagle.
I have never lost a child I can't imagine how I would feel, I know my parents were devastated when Lance died, it was as though he took a piece of their heart with him.  I'm sure Jori will have huge holes in her heart while she processes this trial she is forced to face.  I have heard it said that if all the people we know were brought into a room together to compare trials, most of us would take what we have and be grateful.  Today, as I sat and watched this family mourn the loss of CJ, I felt as if my problems or pains were easy.  The loss of a child is one trial I know the Lord knows I could not handle.  I have so much respect and love for those who have to experience the death of a child, and are able to move forward in faith,  knowing they will again see that child after death.   I'm glad I was able to be a part of the Udall family today, I learned so much from just watching and listening with my heart.  When I try to sleep tonight I will pray for Jori and Dwight, Josh and Ben give them strength and endurance while they try to make sense of a horrible day. I also rejoice that CJ is now with a perfect body, and a perfect mind as he continues on his next chapter and journey.

Saturday, March 8, 2014

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.

Friday, March 7, 2014

Kaitlyn Rae

Friday March 6th, 2014

Happy Birthday to my cutie patootie Kaitlyn Rae.  This cute girl is married, works full time to help her husband get through school, and still manages to find time to visit her OLD MAMA and spend the day. I remember so vividly the day Dr. Lepetich did my ultrasound and announced to us as he pointed and said "you see that?, it's a boy" What a surprise it was to hear him say several months later, "oops, it's a actually a girl"  I didn't believe him, Eric and I had picked out a name for our new little boy, we had bedding made for a boy, and of course clothes for a boy.  Eric ran to Dillards and came back with some darling girl clothes, something special we could take her home from the hospital in.

We are so blessed to have Kaitlyn in our life.  She has brought so much joy to us, she has a personality bigger than life--she always has and always will.  People have always told me she looks so much like me, I can't deny that--she is a spitting image of me, sometimes it even freaks me out when I see a picture of her.  I think seeing her grow up to be the beautiful, strong woman she has become brings so much joy to my heart, it's been  like seeing my childhood all over again, only happy.  So many times I have watched her and been amazed at the similarity of how we think and feel.  She also has much of her dad in her too--she is a good combination of both of us.  I love you Kaitlyn, you have been a great daughter not only to us, but also to our Heavenly Father, he is pleased I'm sure with who you are.