Surgery with Dr. Sal Lettieri

Eric and I waiting to be called back--we are now frequent
flyers here at Mayo--I think I should have a punch card with some
great reward after X amount of surgeries. When the registration
nurse knows you by name and nurses remember you by name
it's a sign, you've overstayed your welcome.

June 24th 4:45am on our way to Mayo Clinic.  I talked Eric's ear off trying to keep from taking any anxiety medication--hey, who knew.....it worked? While entering the Clinic I refused to look to the left, intentionally I jabbered to Eric about what a positive experience I was having with Nerium.  I wanted----NO I actually needed to keep my head in a good place for at least a few more minutes while we got registered.
Just over a year ago was a dreaded day.  I'd been discharged from this same hospital with a disfigured face.  Hearing a doctor tell me "you need to get used to the new Monya, your face will never be the same" If I were to look to the left I would have a vivid remembrance of being wheeled out in a wheelchair and while waiting for Eric to bring the car around I watched a woman fall to the ground have a massive heart attach.  I listened as "code blue" echoed through the corridor. I watched as healthcare professionals did all they could do to revive her life.  They were unsuccessful, and I felt nothing but jealousy.  I wouldn't necessarily say this was my lowest point of my life, but it ranked up in the top 5.
I've seen and felt tragedy, separation anxiety, depression,  heart ache, enormous unexplainable pain, loss of hearing, sight, smell, both breasts and all my hair. I've had temporary loss of feeling in my hands and feet. I still look back at all of this and know the positive out weighs the negative.  I'd do it all again, feel every ache and pain to know what I know now. What I know to be true is there is life after this earth life, it is beautiful and peaceful there is no pain, hurt or jealousy. It is a place like no other place you have been here on earth. I want to go there again, I will accept and take on all that happens to me hear on earth to have that feeling for eternity.
After being registered Eric and I headed up to the 2nd floor for surgery.  When I got into the elevator
I couldn't help but look at that spot, it was empty; too early in the morning for visitors. The rush of reality came flashing back of that day a year ago.  Eric asked if I was OK, I responded "yeah, sure I'm good" After checking in with surgery, they took me right back. I guess Dr. Lettieri is on time.  After vitals, question after question about allergies and when was the last time I ate or drank anything, I started to dose off.  My thought was "Read my chart, can't you see how many times I've answered these questions? this is not my 1st rodeo" I saw Dr. Magtibay walk by and into the patients room across the hall, I suddenly sat up and wanted to talk to him.  The nurse continued with her questions, but I keep asking her to ask Dr. Magtibay come see me when he's done.....she was looking at me like really?  I said to her I will answer all your questions, you can start my IV really fast if you promise me you'll get Dr. Magtibay.  This time the IV only took a one time poke, that's new it usually takes several pokes then they have to get a different, more efficient RN to poke me.
Soon Eric came back and just after that came Dr. Magtibay, I just love him.  He hugged me wanted to know about my surgery. I asked about his children and wife, then Dr. Lettieri came in.  I didn't have to introduce them they knew each other. Dr. Magtibay excused himself, turned smiled at me and wished me blessings on a great outcome.

ready to go, Dr. Lettieri took this picture so I could see
the difference of my smile

Dr. Lettieri smiled at me and when I smiled back.....he said "do that again" not knowing what the heck he was doing I said "why?" he said "quit being difficult just do that again, that thing you just did with your face" I shook my head and said with a big smile "this?" he smiled big, he said "where's Heather?" "I haven't seen her yet" Dr. Lettieri went out to find her, but she was walking in at the same time. "do that again for Heather" I smiled as best I could they both in unison said "It's working" Dr. Lettieri asked me to do that same thing over and over.  Apparently the surgery he did in February with the cross nerve was starting to show.  By their responses I could tell this was good news, he was happy.  Heather has been with me from my 1st diagnosis with breast cancer, and we have become great friends.  I can honestly say she has been a true to the end friend.  She watched as I suffered through chemo, radiation, expansions numerous surgeries she has assisted on for me.  She was there last year when I was rushed to the hospital in horrible pain, curled up in a fetal position losing all control of my bodily functions.  She stayed with my sisters and helped them to understand what was happening to me.  I love her like a sister, I really really love her.  She was happy for me, truly happy for this bit of HOPE I was finally feeling.

Dr. Lettieri, Me, and Heather
I love them both

After Dr. Lettieri gave his pre-op assessments on me he walked out and I yelled "I love you" he answered back "I love you too" I was rolled into the OR,  and off to my Happy Place in Paris. I seriously don't remember a lot about recovery.  The only thing I can remember is saying I needed to go to the bathroom.  In the past I have not been able to have outpatient surgery because either the surgery required me to be observed for more than a few days, or my bladder didn't work because I was under anesthetic for so long. The recovery nurse helped me into the bathroom, when she went to shut the door I said "no don't shut the door" "honey, don't you want some privacy?" "Heck no, I want you to hear the stream of pee his the toilet, and all those people in recovery are on drugs they won't remember"  she laughed I immediately pee'd.....it was long and it was loud, and I was proud--she said "you didn't take anytime at all"  She helped me back to bed and I slept for three days.  Some funny things that happened; that night Eric woke up and I wasn't in the bed so he went looking for me, 1st the bathroom, then he went downstairs no Monya.  He said he walked upstairs again to check the bedrooms, but there I was asleep in the hall closet.  He got a picture of it but I'm not posting it.  The next morning I went to the bathroom, Eric said "a man is coming to fix our cable in the bedroom" I told him ok but I needed to lay in the bed if that was ok with him.  The doorbell rang, Eric brought the man into our room I could hear he and Eric talking. I was sitting on the ground with my head in the toilet throwing up.  Eric came in and said "are you ok? the guy will be done soon"  I don't remember any answer I just remember continuing to throw up.  I guess I fell asleep sitting on the floor in front of the toilet with my head on the toilet seat. He got a laugh out of that one, and no I'm not posting the pictures.  I'm glad to be home, but never want to fall asleep on a toilet seat again.
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    

Dream Big

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

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

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

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

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

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

--I WANT MY WIFE BACK--

First,  before I start on today's excitement, I have not been able to blog for awhile, not because of the neuropathy, because this is a sacred place I like to come, to get real with my feelings and come to a higher ground of healing--I'm having a hard time coming to grips with the new me--I don't like it--I feel like everything that has lead up to this moment was supposed to prepare me, but it hasn't and I feel like a failure in so many ways--with this being said I want to lead up to today's events.

 May 16th -Eric's birthday--I called and asked him to please NOT come to the hospital, I wanted him to spend some time with the family and grand kids--do something fun--being at the Mayo Clinic AGAIN is not fun--he had a hard time agreeing with this--but I insisted.

Ezra and Recker with Grandad on his birthday

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

Saturday May 17th

Today, Eric brought me home from the hospital--as happy as I am to be home--I am still drugged up, and cannot wait to get myself off of these pain meds.  If I listed the drugs I am "supposed" to be taking it would blow your mind--it does mine--I know they are doing this to keep my pain in control, as it was an extreme pain while we were in the hospital.  So I started out slow taking myself off of them to make sure I was not in any pain what so ever-- I knew I did not want to go through the pain I had originally felt, so have taken every precaution to make sure I am OK.  The 1st couple of days I slept hours upon hours--then tried bit by bit to slowly wein myself from the medicine, today I am completely off of all pain medicine and back to the regimen I was used to before this episode.  We arranged for a home nurse to come in and teach Eric how to administer my antibiotics twice per day trough a picc line in my upper arm.  Every   morning Eric administers my medicine through my picc line--then that evening 12 hours later he does it again.
Last night the home care nurse came by to take blood--it was a difficult take--my picc line was clogged up and it really took her over an hour to pull any blood out it felt as if blood was being pulled from my heart.--and I think she just  barely got what she could.

Today Wednesday May 21st

Eric and I got up early, he has arranged to be with me at this appointment today, and then head to work after. First he had to access my picc line, for some reason it was extremely hard out of one side it clogged up too--so he tried the other side and it was a struggle with him putting all of his weight into it he was able to finally push through.  Once that was done we headed on our way to Mayo Clinic--I looked at myself and told Eric I don't think I have ever left my home looking like this, he didn't see anything wrong with it.  My shirt was wrinkled, I had no make up on, bruises on my face. arms and hands --- I am a mess....simply put.  To walk into Mayo Clinic today was excruciating,  the smells hit me from every direction--I could see the people I passed looking at me as if I had a massive tumor growing out of the side of my face, my thought was...I should of left my sunglasses on, worn a mask and I would look perfectly normal here--when we checked in the receptionists saw my picc line hanging out of my shirt and asked me if I was supposed to be on the 7th floor at the hospital (equal to the 3rd floor on the Shea Campus--ports, picc lines and chemo) I said I have no idea, the lady who called yesterday asked me to come for blood work to be done before my appointment with Dr. Barr's, I assumed she knew it was to be taken from my picc line. She said no, it was to be drawn from a vein on my arm.  I was immediately called into the lab, where she proceeded to find a vein--nope not that one, after several attempts with not enough blood being drawn, she tried one last time in my right hand.  Yay, it worked she was able to get just enough blood, and in the mean time I found out the blood work was being ordered by my endocrinologist who had recently changed my thyroid medicine, and was checking to make sure it was a high enough dose--I suddenly remembered I had that appointment with her a couple weeks ago so she had no idea what I have been through these past couple of weeks, no wonder the lab draw from my arm. As we stepped out into the waiting area, there is always something going on, but today I was not in the mood.  Still a part of me watched as people came in and out, today there were two people who stood out in my mind.  One was a doctor, who came in his scrubs sat down looked around, our eyes met and then he was called back for labs. In the other corner of the room was a man and his wife waiting to see an ENT, I'm assuming when he tried to speak he had to activate his voice by putting his finger on his throat.  I watched him scare the lady off her chair next to him as he leaned in to ask her a question about some video game she was playing, she apologized and he then returned the apology.  This brought  the 1st smile to my face in weeks, why? Maybe because I saw that they too, found humor in it.

We were called  back sat  in a room where we waited for a very long time, but not longer than my appointment was supposed to be, we had just gotten there so early for lab work.  Dr. Barr's came in with his resident Dr. Coursin (Andy) I have been in such a foggy head, the second I saw him I remembered seeing him quite often at the hospital.  A quite familiar face, one I enjoy seeing, he's quite, yet seems to know his stuff.

I told Dr. Barr's I had completely taken myself off of all pain medicine--I think he was surprised, but mainly wanted me to be honest with him as to whether I was feeling the pain or not.  I reassured him and Eric, I am not in any pain, none--and that I am trying to de-fog my brain of all that junk.  He agreed it was OK as long as my pain was gone.  Then he took a look inside my ear--it is really corroded with dried blood, I was hoping they were going to clean that out today--nope he filled it with bacitracin which was like filling my ear with Vaseline, and the hotter it gets outside the more it melts and makes a mess. Then he asked me to come take a seat next to Eric.    He proceeded to tell me exactly what happened to me during my stay at the Mayo Clinic Hotel (Hospital) The nerve that he covered with a graft of skin, within days became gangrene, in other words the nerve died. He gave Eric a picture of it, the flesh around it is healthy, but the nerve itself died--and is now being covered by packing in my ear.
OK, so what is the  next step?  Dr. Barr's begins explaining, he has a team of Doctors available to help in surgery on June 3rd.  There  are some options, minimum go in and cover the nerve with a graft of muscle and wait. Or go in graft over the nerve, have another doctor there to do something with my nerves in my tongue to reposition over to the nerves that are not working in my face.  I'm sure I got some of this wrong--the whole time he was talking I felt like I was in a peanuts cartoon, the teacher is talking but my ears are not understanding--waaa waaaa waaa-- I continue to look at Eric and make sure he is taking notes.  Eric said "I want my wife back, I want her to be HAPPY again" Dr. Barr's said "if you're asking me if the right side of her face is ever going to be the same again, the answer is no, I'm sorry but the nerve is dead, we cannot bring something back to life that is dead.....You need to start loving the wife you have, and forget about her face ever looking the same again"......I could feel the tension, Eric did not know how to respond except "I never said I didn't love my wife, I just want to see her happy again"  "She needs to learn to love the new Monya, I was fond of the Monya you and I used to know, but I also like the new Monya" When he left the room for a moment, Eric and I looked at each other, with questions what should we do next? are we being hasty to make a decision?  Actually, just the opposite we looked at each other said we are not making any decisions today, we are going to wait, pray as a family and make a decision when we are ready.  I know with nerves there is a window of opportunity and we do need to make decisions, however, not today, not now, please.

 Fighting back tears, trying once again to be BRAVE--I think I have finally gotten to a point where I am ready to say "why?" I've done all that I've been asked to do, everything Dr. Kreymerman, Magtibay, Northfelt and now Barr's has asked of me.  I have lived a life worthy of feeling joy, I know my tears are not meant as a surrendering but I'm tired, this pain is not going away, and I'm not talking about the physical pain, this pain comes from deep within me--it makes me question everything I know to be true, everything I have preached to my children to live by--but I also believe there are times when life throws  us into storms that are unexpected, and it's at those times we are forced to face our deepest pain--it is then that we have to dig deep and decide if the pain is worth it, I know this life gives us disappointments and HARD things come.  I have been forced my entire life to stand up, be BRAVE, put on my big girl panties and move on.  Today, I'm not there--I just want to cry and I deserve to cry until every drop has left my body--

After leaving Dr. Barr's office, we headed up to the infusion floor, 7th floor at the hospital this is where the chemo is infused.  The antibiotics I am being infused twice a day are very strong, and cause my body functions to not work as well as I am used to--I spent a bit of time int he bathroom, several different times while waiting to called.  Eric took care of checking me in and getting out beeper and I positioned ourselves in chairs we could see the outside mountains, dessert and sunshine.  My mind kept thinking about Dr. Kreymerman, most of the time I look forward to these visits knowing I will be able to see him and Heather, even have lunch with them in between appointments.  Today, Heather is not available for hours. I'm nauseous taking in the smells of this floor, this hospital where I was just discharged from last week--it's more than I can handle--just when I close the door on this place it let's itself back in, for some reason it enters my life uninvited.  I let you go, but you find me again, I'm not stupid you take over my heart piece by piece, I can't help but wonder how many times I can pick up these pieces and start over again.  I watched as a nurse came and got Shirley, pushed her back in the wheelchair asking her if she was ready for her IVIG infusion today?  What kind of question is that? Who the heck say's "Hell yeah, I'm ready let's go it's a party back here?"  My thoughts went to Sonya, my sister she gets IVIG infusions once a month just like Shirley, Sonya has always been so brave, and faced the storms with integrity, I love her and look up to her so much, for many years she has been the matriarch for me--and now even she cannot calm this storm I feel raging up inside of me.

This is not just a passing through, this one is BIG, just as soon as I feel like I'm in a good place and can move forward,  like I've let this go, it always finds me again. --my soul is feeling like a resting place--- I can't handle anymore--my body is not a place of dwelling, I wish I could say the tears release my pain  but in so many ways  I feel like I am constantly learning to breath again and again,  this time this is more than tears, it's the sobbing, not wanting to be left alone I can't handle...yet at times wonder if that is my answer--I'm sorry this is so real and raw. I know God did not make my body to be a place to constantly feel this pain. I wonder how long do you intend on staying this time?  The depression and despair, the VILLAIN taking on a different name.

 I watched as plenty of people came in and out of the infusion unit today, some bald, some carrying their chemo packs on their backs in a backpack--I was trying every way I could to have a pitty party, then someone else would step off that elevator and give me a new perspective--a man with one leg, being pushed in a wheelchair by a not so patient wife, or husband and often wearing an oxygen tank.  It took quite a while  before we were called back, but finally a cute young well qualified pcc line technician took us back into a room, she could not access it and had to put some medicine in the line and asked us to come back in an hour.  We went down the elevator I just wanted some fresh air.  I heard over the loud speaker a "code blue" at the entrance of Mayo,  seriously? Could anything else happen today that would push me over the edge?  Right in front of us we watched a woman take her last breath, they worked as hard as they could, I watched and wished it was me. What a hell of an exit--drop down at the entrance of Mayo Clinic on your way to your car, take your last breath and be done, done with Mayo, done with pain, done with having to make medical decisions.......Today, I have no grace left in me, no patience, no remorse, no regrets, no feeling.

Eric was waiting for me in the cafe, he wanted to grab a bite to eat--none of this looks good, so I'll  have bit of everything-- grilled cheese, tomato and arugula sandwich, hot dog (something I never order) minestrone soup and a white chocolate raspberry bundt cake--none of  these were eaten--just itty, bitty bites--As I walked outside to find the perfect table, I glanced over and saw Tony Mendez PA to Dr. Barr's he didn't even recognize me.....I always said "since I've done away with sugar, processed foods and white flour, per Dr. Northfelt's request, if my cancer comes back, my final meal will be filled with all of the above" however, today showed me the exact opposite--none of this looked good to me, none of it tasted good, everything I eat tastes like metal--this is from the infusions of antibiotics I am getting, I want to throw up every time I try to eat--and it mirrors so much of how I felt going through chemo.  If I am honest I can say I would much rather be sitting in front of Dr. Northfelt having him tell me...those exact words "your cancer is back"  at least with cancer it was difficult to go through but the VILLAIN did not win, in fact I really hate when people say "she or he lost their battle to cancer" no they didn't, most people who go through cancer treatments come out on the other side of it a better person, a stronger person given a chance to redeem themselves and help others to do the same.  This thing with the nerve in my face, I feel is not going away--I'm not sure how I can recover from this.  I feel like I have a load so heavy I can hardly breath right now--my strength is gone,  I'm weak--I don't think all of my life I have ever felt this emptyness I'm feeling now. I've asked friends and family to pray for me, to ask the Lord to heal me, or to give me strength to endure whatever is coming next.....how many times do I need to do this? Oh geez, I know the answer to that before even finishing that sentence. This a world we live in where nothing is certain, but I know this--HE LOVES ME-- and ---EVERYTHING HAPPENS FOR A REASON--However, today, right now, I don't want to hear that, I'm sad, I'm scared and I'm angry.

 After we finished up my picc line on the the 7th floor, we were given the green light to go home--I ran to the elevator, got off on the 1st floor and ran past the piano player, as I passed the area where the lady had just passed away less than an hour ago, I glanced over looked at the people sitting in the chairs surrounding that area and said to Eric "I wonder if that guys knows and angel got her wings today, less than an hour ago, exactly where he is sitting" and then I ran as fast as I could to the car I mean I was like a bull trying to get out of the pin--Eric said "sweetheart, you really need to keep your voice down while you're walking or running through the exit"

This has been a very difficult week, looking in the mirror I am a different person--my face has partial facial paralysis, been told it is permanent--I don't want to look in the mirror--this is much worse than when I looked at my breasts for the first time after my mastectomy, at least then I could cover them up, have them fixed, and the baldness was hard but it never defined me--it grew back.  Yes, this is much worse... how can I continue in this body looking like this?  So many will say "but your alive" or like Dr. Barr's said to me today "but you have your eyesight" those words pierce my heart right down to my soul--I know those are supposed to be inspiring and help me to move forward-but right now I need to process  what happened today.

What happened?

I am in extreme pain, it hurts to type this.  I don't know what happened, I took a hot bath and felt fine. Eric came in to check on me and make sure I hadn't drown.  I laid down to sleep around 3:30 am and all of a sudden had massive pain in my ear, going down into my jaw line and throat--it's difficult to see.  I've had some liquid in the left ear this week but it only lasted for about 3 days and finally cleared up but other than that I think I've done pretty well without pain medicine. The way I feel right now is I wish I could go to sleep and not wake up--I've taken the pain medicine to see if it will help--but i=the pain is getting worse--my eyes are blurring, trying to type this out as a blind deaf person is hard--but just in case I don't wake up I want Eric to know what's happening.
After my bath I brushed my teeth, changed out the cotton ball because it was soaking through. I felt a pop in my right ear followed by immense pain--I'm supposed to be at Dr. Barr's office at 12:00 today,  This is awful--I can't do this, I feel like I have no control my legs won't stop shaking and now
My body is quivering, I cannot stop moving my legs, and my arms have no control--the pain is that bad.
I can't type any more it hurts to badly.

Written Wednesday May 7th

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--

Weeyum at the Beach and Waterfalls

view of the beach love the white sand

Chloe covering Blake in sand

So Fun

He loved it

the best part 

watching Weeyum finally get to play in the D.R. water

he had to take off his trunks to clean off all the sand

this was a great finish to our day on the beach

Eric and I in the Caves of the waterfalls

Eric asked Weeyum if there was anything he did not get to see or do while he was serving, and then told him we are going to do it.  We spent the day at the village in Puerto Plata and beaches, then went to the 27 waterfalls.  Eric and Blake hiked up to do 12 of them, Chloe and I stayed back and only did 7.  It was beautiful, the boys said "next time we are going to do the all 27"  Chloe and I are good with 7.

The School 

Theses guys could not wait for me to take their picture

he asked me "facebuke, right?"  (translation Facebook)

I loved these cute school kids

they were shy at first but then didn't want me to stop

coconuts

biggest and most delicious avocados EVER

not sure, don't care

Chloe and I enjoying our coconut milk on the
way to the beach

Eric and Chloe

they cut open the coconut with a machete then give
it back to you to eat

drying out the very raw meat--YUK

To sum things up with our trip to the D. R. it was the most amazing trip I have ever had.  I cannot describe the overwhelming feeling I received of our Savior's Love for ALL of his children.  This time in the D. R. reminds me how much we are all here on earth to be there for each other, no matter what the circumstances.  It was an unbelievable comfort hearing these sisters had been a mom to my son while I could not be there for him,  to be the hands of the Lord in leading him to the spirit and helping him to not only become the man he is now, but to also teach him FAITH and HOPE in a better world.  My heart was beating and my eyes overflowing with tears when I heard the stories of service and unconditional love Elder Weeyums learned while serving in the D. R.  I am convinced now more than ever before, missionaries, if obedient, are completely blessed and watched over by our Heavenly Father while they serve.

 When I saw the circumstances in which Elder Weeyums lived it made my heart hurt for him, I could not believe the sacrifice he made, leaving a safe environment of a home with running water and air conditioning, modern conveniences that most of us take for granted, he learned to appreciate.  He left the comfort of home knowing his mother was  going to be in a battle for her life,  I'm not quite sure how he did that. If I had seen the circumstances he was going to be living in I would of never let him go, however, I know there is a time and season to all things and I was prepared my entire life to have FAITH, when he left I had complete FAITH he would return to us a better man.  If you were to ask most return missionaries if they would do it again, I think if they are honest most would say it was the greatest 2 years of their life, but would not want to go through it again. 

 President Greer gave Blake a blessing before he left for his mission, and in that blessing he told him if he was obedient his mother would be here when he got home, those words helped him get through the rough days and the people in the D. R. taught him more than anything I could of ever taught him if he had stayed home.    So many nights when he was out serving I would go into his room and kneel to pray, now after visiting the D. R. I wonder if those nights were the times he was burdened with more than he thought he could handle, if those were the times he sought comfort from the women who listened to his fears, and wiped away his tears.  I will forever be grateful to those families who led him and guided him and helped him return to us safely.

Porche or Pinto

The past couple of days have been rough, not a lot of sleep, insomnia is kicking me in the behind.  It's the worst feeling to be up all night, staring at the ceiling, knowing in just a couple hours I have to get up and go to work.   Part of the reason for this besides the obvious hormonal, cancer crap, is I just realized that Us Airways has changed our insurance carriers, and I may not be able to go to Mayo Clinic anymore--when I opened the envelope and read it, I literally wanted to throw up, I felt sick.  Eric had just got home from work when I was reading the mail, I asked Blake to please go get him, when he came down stairs I asked him to read it too, he read it, and read it and then read it again, the next couple of hours I tried to find out some information but of course the offices are closed until Monday--I was watching Recker he was a great distraction, he and I jumped on the trampoline together, I had to keep saying to myself "it's OK, whatever happens, you can't control this, so just go with whatever happens"  yeah right, this means no more Dr. Northfelt, Dr. Magtibay, Dr. Freeman, Dr. Kreymerman,  MaryAnn Forrett,,  and all the wonderful people who have touched my life and been with me from the beginning of my journey. I could not get my mind off of it, I watched a movie with Recker on my bed, he makes me laugh and takes everything away just for a little bit--I loved that time with him, as soon as he fell asleep on my chest, I laid him next to me and just stared at him--he is so perfect, so untouched by the worries of the world.
Needless to say Eric and I were up all night worrying about this insurance thing, I went down stairs and laid on the sofa, it wasn't long before he was sitting next to me.  I love Eric, he looked at me and said "no matter what I want you to be at Mayo Clinic with your doctors, I will make it happen"  I told him it's not fair, it's not  that I think Mayo Clinic is superior to any other facility, it's just that those are MY people, they  are the ones who I cried with, the doctors I love and who I feel love me and know me.  I will never share with any other  doctors what I shared with Dr. Kreymerman and Dr. Magtibay they know a part of my life that I have never shared with anyone else, except Eric.  I was so upset I looked at Eric and said "it's like driving a Porche and then all of sudden being told you have to drive a Pinto, but you are going to have to pay more for it.  He looked at me and responded "yes sweetheart, but you still have a car"

Time To Get Away From Life's Trials🚩

Envoy--USAIRWAYS no better way to fly

the food

 One year ago Eric surprised me with a trip to Paris, it was an incredible trip and we decided that this time every year we are going to take the time together and plan a trip to places we have always wanted to go--NO REGRETS is our theme for life.
On Wednesday I flew with Kayla, Jeremy and Recker from New Haven Connecticut to Philadelphia they needed to catch their connecting flight back to Arizona and I was meeting with Eric to fly to Frankfurt Germany then on to Venice--One of the perks of working for USAIRWAYS is Eric and I are able to fly for free, and we can upgrade to 1st class when it is available, this makes it affordable for us to go on these trips.  As we snuggled into our very comfortable Envoy seats  I began to think about all that  has crossed my path this year.  This time last year I was just starting to get some hair.  When I returned from Paris with Eric, Dr. Kreymerman and I had a date in the OR to take out my expanders and finish up my reconstructive surgery, went back into surgery just a week before Christmas to finish up with PK.  Blake passed his year mark on his mission. One smidge of information I have not shared with many people --While I was in Paris last year I began to bleed vaginally, I tried very hard to keep it from Eric but when I woke up one night with a hemorage  I could not hide it any longer and he insisted I see Dr. Magtibay when we got home.   Dr. Magtibay is my gynocological oncologist, with some concern that the cancer had returned we scheduled a partial hysterectomy for January.  I remember crying in his office when he told me, he asked why I was so scared and confused about this surgery, I finally for the 1st time in my life opened up to him and Dr. Kreymerman about my fears-I do not feel comfortable talking about the details here on my blog, but I will say it has everything to do with the sexual abuse I endured as a child.  I cannot even begin to explain how difficult it was to talk about those details, to actually say the words outloud made me want to vomit.  I felt safe and comforted with both Dr. Magtibay and Kreymerman.  On the day of my surgery Dr. Kreymerman knowing how hard this surgery was going to be on me showed up in his scrubs just before they knocked me out, when he came in I could actually feel my heart leap in my chest, just before I was in a fetal position hysterically crying.  This was not his day in the hospital and probably had some patients waiting at the Clinic, but right now he was there for me, holding my hand his smiling face was the last I saw before I went out. I truly Love Dr. Peter Kreymerman. That was a special day for me.  I now look over at Eric and he is so asleep, snoring as loud as ever, this man means more to me than he or anyone else will ever know.  When I think about all he has endured with me and never complained, not one time it makes me smile...we belong together, and the past couple of months have been rough on me, without him I think I would of had a break down.  Some of you who have read my blog know about my friend Trystan, I met her about a year ago when she emailed me after reading my blog one evening.  Without going into all the details I will tell you that she told me she had a 2 year old daughter named Paige who died in a car accident she too was in a coma for 5 months, during that time her husband committed suicide, now she was going through cancer treatments and needed someone to talk to, when she found my blog and emailed me I was more than happy to share what I knew with her, over the next 7 months or so we became very close friends. During most of this time she was in the Mayo Hospital in Rochester where she was not only fighting the cancer with chemo, she needed a kidney which I was asked to donate to her, after talking it over with my family I decided I would. Our family fasted, prayed and even invited her to be included in our FHE on Monday nights via the phone.  There are so many more details that I really don't want to go into, but we found out she was a fraud, she never had a child that died in fact she has never given birth or been married, she did not have cancer--basically everything she told me was a lie her purpose was to find women who are vulnerable and get them to donate to a fake non profit organization she has for children with cancer, and for the kidney foundation--however the money is being directly deposited into her personal bank account.  I have now been in contact with at least 7 women who have been hurt by her.  The embarrassment and stress this has caused me is difficult to explain but one thing I know for sure is that the Lord has things happen in our lives for a  reason, I believe the reason is so that Shannon, April, Lisa, Donna, Ashley, Carol, Helen and the others could bless my life with their love and compassion, they have all become great friends thanks to Trystan--oh and by the way Trystan is not her name according to her parole officer.  I still continue to pray for her to get the help she needs and to find some peace in her life.
HONEST: I love People
TRUTH:  This could happen to anyone--maybe even me again
REALITY:  Life brings all sorts of people into our lives, we need to learn from them all
LEARNED:  Be myself-ALWAYS-it's not necessary to be a friend with someone who is not true to themselves or to you--I CAN'T SAVE EVERYONE

Now as I sit in this seat flying over international seas my thoughts are changed to another problem that is drowning my brain ....MY MOM--Recently I received a phone call from Ron Lundberg, his wife Susan is my moms best friend, Ron says my mom is not doing well and the husband and wife who are living with her as her health care workers are moving to Texas after being with her for 2 years.
This has been weighing on my mind for weeks now. She is not able to care for herself and refuses to move into a facility--the healthcare worker is turning her over to the state for evaluation.  I explained to Ron and Susan if I thought for one second my taking her in and caring for her would change anything I would in a heart beat--I asked him if I could pray  about it and discuss it with my sisters before making a decision, there is so much more detail to this story that I don't want to judge or go into it on my blog.  My heart is telling me maybe there is some HOPE for our mother daughter relationship, but my mind is saying NO WAY should I go there--my doctors are aware of the situation and in no way think I should be putting myself in any stressful situations--I took a week to think about it pray about it and discuss it with my sisters, then we met with Susan and Ron, they too have prayed about this situation and confirmed what Heavenly Father has already told me--now is not the time, she is not ready to change her heart--she would like an apology from me---I am not sure exactly what I need to apologize for but I would over and over again if I thought it would help cure and mend her heart. I spiritually, mentally and physically cannot put myself through this again--so for now, again, I turn it over to the Lord and let him take care of what I can't.  My thoughts and prayers will continually be with her for her health and spiritual well being.
So with that all being said--I am ready for a vacation from LIFE --we just arrived in Venice and I am excited about our little adventure.

Recker the cookies and an Update

Today I spent the day with Recker, he is so cute and fun.  He has not been feeling that great lately, just a cold with runny nose and cough.  I sure wish he would start talking, he is 15 months old and we still have not heard a word out of that cute little mouth of his.  Maybe I am going to be sorry once he does start to talk, but for some reason I just want to hear him say mama, daddy, OR BONBON would be good too.  I love when he puts his arms out for me to hold him, or smiles big when he sees me, it is the best feeling ever to be a grandma, I love it, and I love that they only live a couple miles away and I get to see him everyday.
Last night Kayla was in her kitchen cleaning and she let Recker watch a movie before it was time for prayers and bedtime, when she went in to check on him these pictures are what she found. This cute little guy got into Kayla's purse and got her stash of Girl Scout Cookies. He looks so big to me and looks like he is totally relaxed and enjoying his movie.

Recker scored the Girl Scout Cookies

I love the look on his face

Just chillin' with my cookies ha ha

My right hip is getting worse, it hurts continually now instead of just once in awhile.  I guess I will have to mention that to Dr. Northfelt  (oncologist) when I see him next.  I also think it is going to be so hard for me to exercise with this hip problem, I'm going to attempt it after Spring Break next week.  My right breast hurts like no other, not sure what that is all about, it's been going on for awhile now, but since my last surgery I have not wanted to see, hear, or smell the Mayo Clinic.  I told Eric the other night, it's been about 20 months since my diagnosis, and I have been at the Mayo Clinic more times than I care to mention, the last couple months have been great not having to go over there, well with the exception of seeing Dr. Magtibay last week.  I think I am supposed to see Dr. Northfelt this month, guess I should check my itinerary huh?  This has been quite a journey, a long, long journey but I feel like I am seeing some light at the end of the tunnel, my son is coming home from his mission to a healthy, happy mother.

Why?

***I wrote this last week, but just finished it this morning***

Today I took the long way home from Mayo Clinic, worlds away from the noise of the world. It felt so good to be in my own thoughts.  I have been so afraid to go see Dr. Magtibay.  It's hard to explain to anyone who does not know the journey of my life.  Questions why are always on my mind lately.  The questions Why are not Why did these things happen to me?  I am way past that.  Now I say WHY NOT ME? In that respect.

 I know I  chose this life before I came to this earth, I have dreamed of being in a little white dress with the angels surrounding me when I said good-bye to my friends and family.  Heavenly Father had and has a plan for me.  The questions in my mind are more like how did such an abused and neglected child stay so close to the plan, how did I continue to have FAITH and HOPE in a world that seemed so dark?  Why did Heavenly Father have so much FAITH and HOPE in me? I have made so many mistakes,  Why has the Lord blessed me with so many miracles in my life?  Eric, oh how I love him and realize more and more everyday that he was such a blessing to my life when I met him, I was lost and alone, he saved me.  He was part of the plan, I know the Lord knew I needed a man exactly like Eric to get me through the rough years that would be ahead of us.  

Why, would the Lord give me his trust?  There was so much destruction in my path and I could of taken a different road, the only thing I knew and know for sure is that I want to be worthy in his eyes, inside and out, HE has blessed me with so much in my life.  I know everyday I live,  HE has divine intentions for me, it's up to me to stick to HIS design for me.

Why have I been so blessed with the best doctors?  I love Dr. Peter Kreymerman and know that Eric was inspired when he chose to have me go to Mayo Clinic.  Now I have  Dr. Magtibay to add to my list of blessings, my appointment went great with him and he too is a kind and a gentle man, he works in the same office area as Dr. Kreymerman.  It felt weird to walk through the office space and not see Heather, or PK.  I miss them.

I'm going to start exercising again, this time taking it slow, knowing I will have an uphill challenge, being more realistic this time knowing I will never be the athlete I was, it's ok though I will do what I can and be grateful.  

Anxiety-Insomnia-and Finding Peace

I am trying to learn to control the thoughts that bombard my brain.  The flashbacks that I get seem to be uncontrollable for me right now, and then they create anxiety and insomnia.  I really believe that my last surgery was not about CANCER, although I can still accept it as a Miracle in my life.  I also am able to realistically except the fact that there are things from my past that have haunted me for years.  I believe that Heavenly Father put that miracle in my life for a purpose, he is trying to teach me to deal with my past and try to come to a place in my life where I can LIVE FREE, free from the demons that constantly create these horrible flashbacks.  When someone tells you "don't be anxious, or think of something else while you are trying to sleep"  those statements in them self create anxiety, trying to not think about sleeping makes me want to sleep so badly but I can't because I have worked myself into  such an anxiety attack that now it is just too late.  I never had anxiety or insomnia before the VILLAIN decided to invade my life, but now that I have it, I'm trying to deal with it the best I can.  Now that I have had this hysterectomy, it is getting worse, the anxiety that built up inside me just to get myself to have the surgery is still lingering in the thoughts and feelings.  The appointment I have with Dr. Magitbay next week is constantly on my mind, and I am scared to go.
My right breast hurts so bad, and I am continually wondering if cancer has taken up residency again, it is this vicious cycle that Cancer patients go through.  I'm quite sure it's nothing, but in the back of my head there is that silly thought.  The Lord has been so patient and loving to me, and I thank him for ever thing  and everyone good in my life.   With HIM I know there is nothing I cannot endure.  I try to find some peaceful moments everyday to reflect on all that HE has given me.

Dr. Peter Kreymerman Leaves for Fellowship

Today I thought a lot about Dr.Peter Kreymerman and his family moving to Atlanta, it looks like there is going to be a huge storm there. I pray for success and happiness to him and his family during his fellowship.
 I'm home from the Mayo Hospital. However, I had to come home with a foley (cath) seriously? that is nasty, even though I won't be going anywhere other than my bedroom I still don't like walking from the bedroom to the bathroom with a pee bag handing from my pant leg, and then I have to empty it..... nice!!! Tomorrow I will go see Dr. Magtibay, get the foley out, pray I can go to the bathroom on my own, and if all goes well not have to go back and see him for 6 weeks. Tomorrow we get a miracle, I know we do.
I am still in pain, which is to be expected, but mentally my demons are gone. I know there will be days when I will have to face him, but I've taught myself how to let go and let the Lord take it.

Still a little Out of IT

This is what I wrote down as I waited at the Mayo Friday.  My hands are shaking so bad, my thoughts are with Trys, its hard to believe we are both having surgery today-her in Rochester Mayo and me Scottsdale Mayo.  Walking from the car through the Mayo hospital doors, I told Eric feels like I'm walking the Green Mile. It's 9:30 am, check in time.  The sitting, anticipating, watching, waiting and pacing is terrible I hate this part.  I feel like I need to throw up, my stomach is sick, partly because of my nerves, and partly because Mayo smells of sickness today!  I'm in my most comfy jammies with my breast cancer blanket wrapped around me, Eric is rubbing my back and reassuring me...this waiting is terrible.  I am going into the OR today with 3 wallet size pictures, one of Eric and I in Paris, one of Recker, and the last one of me letting balloons go to Heaven for Paige, this one reminds me to let go and the let the Lord do his stuff. They finally call my name over the loud speaker to take me back for pre-op, they tell Eric he can come back in about 40 minutes, right before I go into the surgery.  I know the routine, it's always the same, only this time I am really, really scared I'm shaking and in a fetal postition, Dr. Magtibay comes in to see me and tells me it's all gonna be ok, as soon as he leaves I curled up under my blanket and cried like a baby, I could hear nurses coming in the room and scurrying around, but I didn't take my head out until one asked me if I was ok, I said "I'm fine"  then I wonder what is happening to Trys right now, is she ok?  While going into the OR the nurse told me she liked my blanket, and that Recker was such a cute little boy, I was clinging to those pictures, they help take my mind off of what was about to happen.  I got the best surprise ever....while I was waiting in the OR for them to put me out, Dr. Kreymerman came in to see me, he stayed until I went to sleep.  He will never know what that meant to me, his face was the last one I saw and his voice was the last I heard, thanks PK, you really are the best doctor in the Universe. I'm going to miss you the most, how many doctors leave their office and go over to the hospital to see a patient get put to sleep for another doctors surgery?all because he knew I was scared.... I love Doctor Peter Kreymerman.
I woke up in recovery, and was ready to go home, well not physically but mentally I just wanted to get out of there, I have this love/hate relationship with Mayo Hospital.  I remember waking up and asking about Trystan, how is she? They had no idea who I was talking about.Where is my husband?  Where is my uterus? The nurse said "are you in pain?"  I responded 'very much so" "FROM ONE TO TEN HOW WOULD YOU RATE YOUR PAIN?"  well I'd say when it gets to the point that I want to kick you then it's time, I hate pain meds and will put them off as long as I can but....... it;s time, right now or I am going to start kicking and screaming. My post op nurse is so nice she stayed with me util I went to my room on the 7th floor. Room 64, never been to this room I always come to the 7th floor though.
Taking me from the OR bed to the regular room bed was difficult, I had to lift my own weight, I did good they readjusted me a little, but I could see some blood. They quickly replaced that with a clean sheet, thank you.  I don' t remember much about this night except my children came to visit, and Recker was all over the place he laid his head on my shoulder a few times and gave me a little kiss.
If I stayed awake to enjoy them I don't remember, I just remember waking up with Eric in a bed on the floor next to me, and right now as I write this I am dozing off....so I will write a bit more later