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.

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.

"Oh Dear, Now What?

Wednesday February 19, 2014

I woke up this morning in a puddle of blood on my pillow, all over the side of my face, neck and ear.  How did I sleep through that?  I went to the Mayo to have it checked out, by the time I had gotten there I had to change out the bloody cotton balls 4 times, they were saturated.  It was not painful, just messy.

When I arrived at the Mayo I had to wait a bit in the waiting area because I did not have a scheduled appointment--I looked around at the people who were there today--no one I knew, but I watched a woman in a wheelchair, I was intrigued by her for some reason.  I could hear her and her partner talking about different things, but I was more interested in why both of her legs were amputated and one arm gone--I kept to myself, until her partner asked me if I would pass her a magazine.  I said "sure which one do you want?" we began a conversation, the three of us and I was able to ask about her medical issues.  She was in a horrible car accident, she was rushed to the hospital and when she woke up they were gone.  I asked her how that made her feel, and that it must of been hard to process.  Her answer was "at first I didn't know they were gone and I was just happy to be alive, but when I realized or was told about the loss of limbs I was very depressed, almost to the point of suicide" "understandably so" I said.  "How are you dealing with it now that it's been awhile and you have had to get out into the world and live again?"  She graciously said "I'm alive, that is a blessing in itself, but I had no idea how kind people could be, I normally just considered people to be judgemental and rude, and there are those who stare but for the most part people care"

I too, believe that inside every person is a caring heart.  It is a natural instinct for people to look at a person who is bald with cancer, especially a woman, or someone who has lost limbs, most of the time we just pass them by and forget to give them a smile or two.

MONYA WILLIAMS is announced over the loud speaker and off I went--saying good bye knowing I will probably not ever see this woman again, but wanting her to know she left an impression on my heart I will never forget--I started to leave then went back and told her what an impression she had made on me, and gave her my email address to keep in touch.  With tears in her eyes, she said thank you.

My ear still bleeding, but Doctor Barrs is in surgery and cannot see me, sent in his resident, the same one who saw me in the hospital and would not give me pain meds, the same one who over looked the huge softball size hematoma on my head--"Oh dear, now what?" was my thought.  Like always, went over my medication list, then started her vacuume sucking out of my ear.  My balance was off, for quite awhile--this is what she said to me "ummm, I can't see where the source of the bleeding is coming from, so I think you should see Dr. Barr's next week"  That is the extent of it for now--she stuck a cotton ball in my ear and off I went--"what a waste of my gas"  was my thought initially then I remembered the amputee I met....she is the reason I was supposed to come here today...I met a new friend and was able to spread some happiness, her with me and me with her.

This is my walk away from Mayo Clinic

Pull your britches up

Thursday February 13th, 2014

Today I spent some time at Mayo Clinic.  When I stepped off the elevator onto the 5th floor,  I looked up to see a sign with arrows directing you to the department you may need to visit. 5 East Check In, Neurology/Neurosurgery, Pain Clinic, PM and R/PT, Psychiatry/Psychology, Sleep Medicine.  I had to laugh when I  realized I have been to everyone of these departments within the past 4 years.  Today I am visiting the pain clinic.

My right hip and back are throbbing in pain,  it is descending down my thigh to my knee and then traveling to my feet and out my toes.  I'm hoping for some answers.  Today is the usual stuff going on at Mayo Clinic. A lot of people walking around with no hair, or oxygen tanks, people being pushed in wheel chairs.  Today I am extra sensitive for some reason, tears are bubbling up.   I can't stop thinking about cancer,  it has changed my life, changed the life of my loved ones.   It all hit me at once today, I cried.  I have been so blessed. I am a miracle.  I'm looking around at these people and wondering how I can help them to believe in something good?  I want to say "Go forward in faith, have HOPE,  remember where you came from and where you are going" Most of the people  look sad and dreary.  I watched a husband and wife sitting together in the waiting area holding hands. I stared at that sweet moment, more tears flowed down my cheeks.

Suddenly I heard my name being announced, I wiped the tears from my cheeks and shook myself out of the  self induced coma I was in. The assistant asked if I was OK, I smiled and said "Yes, just a little emotional today"  I'm sure she was uncomfortable as she lead me into the exam room, I couldn't stop the tears from falling.  She asked if I was in 'that much pain'  I quickly grabbed a tissue and wiped my face. I told her "No, I'm OK" but in my head I'm thinking "really? really am I OK?" She left the room.

I've  always wondered why Mayo Clinic has a nurse come in ask what medicine you are taking.  I rattle them all off as she stares at the computer reading them as I say them....does anyone think that is weird? Then she looks at me and says "any other meds?"  she proceeds to  repeat what I just told her by reading it off my file. She leaves and the P.A. comes in,  he is tall, very handsome and very young, maybe in his late 20's.  Then he starts asking the same questions the nurse asked.  With his handy little pen he is writing notes, then just about as cute as he could be, he pulled out his own notes.   He did a routine check.... bend over touch your toes....(yeah right) lean back, walk forward, turn around....blah blah blah...... I asked if he was new, "Yes, but I know what I'm doing"  I wanted to say 'whoa there tiger I'm just wondering not accusing.' Dr. cutie pie seemed nervous,  he looked at me, smiled and said "They won't let me abbreviate anything here at Mayo"  I smiled and said "You mean like LOL?" This lightened up the room a little,  we both laughed.  He leaves the room and Doctor Freeman I comes in, again asking about the medicine. It's the 3rd time I've reported my medicine list.  I suppose being a teaching hospital I should expect this 'red carpet' treatment.  Nothing ever gets over looked.

When I was getting my injection, Dr. Freeman was gentle but this time it hurt more than I remember.
I've never cried while getting an injection, but today I did.  It didn't help any that I could see everything he was doing through the mirror in front of me.  I watched him take the long nasty needle and stick it in my hip, giving it a little push and shove this way and that way to make sure the entire area was covered--I was embarrassed when I cried.  Just when I thought it was over and the tears were gone, I had to turn over and get my lower back injected--I almost came off the table, now I'm really shaking in pain.  He asks the P.A. "Did you see how I did that?" REALLY? I'm right here I can hear you... he said "Pull your britches up, and we can get you into the recovery room"  for some reason something in my brain clicked and took me back to my youth....."Pull your britches up" My grandmother used to say when she wanted us to basically 'put on our big girl panties' and wipe the dirt off our knees, it's going to be OK.

Yes, it is going to be OK.  I'm going to be OK.  Tonight I just want to sleep, so much has been going on the last few nights I have not slept.  I need to call upon the heavens and ask once again if the angels can calm my hurting heart and help me find some peace, go to my quiet place and sleep.  I trust in His plan for me and for our family, but tonight I just need some reassurance that all is good in my little world, then I can sleep.

Monday February 17, 2014

Today would of been my mother's birthday.  Every year on this day I think about her, I say an extra prayer hoping she will have a peaceful birthday.  I decided a couple of days ago that on this day in memory of her I would pay it forward, do something kind for someone and just spread happiness.

The alarm going off this morning startled me, mostly because it was 3:30 a.m. and I have not been up at this time of the morning since my medical leave 2 months ago, but also because I've been thinking about what I could do to share happiness today.

On my way to work it was a little chilly outside so I stopped at Starbucks to get a caramel apple cider, when I pulled up to the drive up window, the girl said in her perky 4 a.m. voice "Here's your caramel apple cider, oh and it's free for you" I asked why it was free, again perky as could be she says "Oh, the person in the car in front of you wanted to pay for your drink" by this time I have a puzzled look on my face.... she said "You know, like pay it forward?" Wait, what? I wanted to spread happiness today, how, why did someone beat me to it? The natural thing would have been for me to pay for the people in the car behind me, but being so shocked at the mere kindness of a stranger I said thank you and drove off.  "Why didn't I pay for those people?" was my thought all the way to work, however it did make me smile and renew my faith in the world,  maybe all is not lost, there is some happiness to spread.

When I got to work there were 800+ people on hold because of all the winter storms in the East.  I heard grumblings of co-workers who were tired from working mandatory 12 hour overtime hours. I said to myself "No matter what happens on the phones today, I will not allow anyone to crush my dreams of a happy day."  Every phone call for the next 4 hours were people stranded, trying to get home, get to a meeting, make it to a wedding or funeral.  I tried my hardest to put myself in their shoes, despite their desperate cries for someone (USAirways) to take responsibility for the weather.

On my way home from work, I listened to happy music, joyful sounds of music bring back memories of my mom.  I tried really hard not to break out in tears.  I so wish my mother had known me as a woman.  I'm smiling thinking of her finally happy now--why do so many people walk around mad, angry and resentful?  Living this way takes so much energy,  requires so much wasted time.  Today I choose to be happy--

I can't prove in any way that laughter really is the best medicine, but I have seen many examples of people in my life who have had great results in doing this regularly.  It's been a very long time since I've had a good belly laugh--I think it's about time for me to tap back into that.

I went to Paradise Bakery, bought 2 dozen cookies, went to a place where I know some people would be needing a lift today -- the chemo lab at Mayo Clinic -- I would have loved a good cookie when I was sitting in that chair watching the red dragon drain into my body.  This brought much happiness for me, I loved seeing some frowns turn to smiles--

Today, I worked on not worrying about the past or the future, but just being in the moment, today I made strides towards  living free, living happy.

Happy Birthday mom.

Be happy now

Thursday December 26th--well actually it is now the 27th at 4:09 am

I cannot sleep.  Today Eric and I went to the Mayo Clinic with hopes of getting a 2nd opinion from the "Chief of Surgery" turns out he was Doogie Houser--Returned missionary very nice guy, but did not give me any answers,---and just so you know he is the Chief of Surgery over Residents, he laughed and said it just means all the old Doctors are off for the Holidays and I am the oldest resident here.  To be perfectly honest, I left there with no more answers than when I went--I was told it was healing the way it is supposed to heal--but if you saw the picture you know it is infected.   The resident told me to stop taking the antibiotics and wait to see Dr. Barr's on January 2nd when he returns, which happens to be when my next appointment is. He stuffed it with cotton and off he went--

I don't think I have ever been happy to go to Mayo Clinic, well maybe on my last day of chemo, but today I was looking forward to it I need answers--I am in horrible pain and it drains constantly.  I will be staying out of public areas which I have been doing anyway, sometimes it gets depressing, and when I do go anywhere I feel like I need to wear a mask.  Imagine those stares--mask, half a head of hair and in pain.  I was not very nice to Eric today, on the way there I was in pain, I didn't want him to go with me because I hate people waiting around for me, and I wasn't on any drugs, so I could of driven, but with all that being said it explains a lot of things, one being the moodiness, 2 the tears.  He even told me I was being mean to him--I'm sorry Eric--chalk it up to bad day?? I'll try harder.

When I pulled out the packing after I got home from Mayo the oozie junk literally ran like a faucet into the sink--do I think its infected YES.  I am taking a stronger pain medicine, but not able to sleep, then when I finally do get to sleep I can't wake up--what to do?  I'm a mess--Eric has been off work and wants to get me out of the house but I'm afraid to go anywhere. Tomorrow I'm going to sit in the back yard and read, maybe that will cheer me up.  Ok so what did I learn today? 1.  Doctors, especially the attending doctors need vacation too, so don't make appointments around Christmas, and insist on seeing the Attending if you are forced to or need to. 2. be nice even when you feel like it's a crappy day, especially to the ones taking care of you.  3. more is not better--be happy with what you have, don't wait, be happy now no matter what the circumstances.

He knows me

It's so difficult to know yourself, I mean really know yourself well enough to know when enough is enough.  I woke up this morning really feeling like I've been here forever,  depressed, I drug myself out the bed into the bathroom trying hard to see what was so great about today....?  With tears running down my face I looked at myself in the mirror that same mirror I 1st stared at my flat chested scared breasts, the same mirror I stared at my bald head inspecting every inch of it, today while I look at myself I wonder what is worse, being completely bald or partially bald? The past couple of days have been pulling me down, I'm in desperate need of the Lord to come find me---light a torch under me--writing here on this blog is where I can find myself,  especially on the days when I just don't understand, when I don't want to ask why, or I don't want to hear or feel anything, nothing, where I can hide in the shadows cry all I want and  know HE knows HE is the only one who knows what I'm feeling, I have theses bittersweet tears, sleepless nights  every now and then, that end up becoming  a heartbreak that is so sacred and beautiful to me, its difficult to even describe.  I wonder if even the bravest of the brave ever have these moments? Today I lit a fire log and stared at it as flames went to ashes, one day my light will go out and all that will be left is ashes--will I have done enough? I have been given so many tender mercies, and I truly have come to learn that HE is the tender behind the mercy--no doubt about that, but even with this knowledge I sometimes feel so alone.

I remember a time in my life when I wanted to turn around and leave it all behind, I begged and pleaded with the Lord to leave me alone, stay away, quit helping me, I didn't want HIS help anymore I really just wanted to end it all. If I could of I would of run my car off a cliff, that was the plan.  But I made my choice that day to take on HIS name, I turned my car around and from that day forward I have been true to that promise to HIM.  I feel this oneness with those who decide for whatever reason to take their own lives, my compassion and love for them runs deep, this is a world of weakness and we live in it.  When my mind starts to wonder over to that side, I know its time to be thankful, be grateful, by humble and thank HIM who loves me so much.  There have been times when I've closed that door on him and  know many others who have done the same, but what I've learned is that HE always keeps HIS door open, we can lock our heart from HIM, but HE will never lock HIS door, through the storms of life, if I allow HIM, HE will fill up my heart and bubble up through my eyes with tears. I am so impatient, even when I know HE is teaching me, step by step--I cannot think of a more pure love, than the love HE has for all HIS children.

Oh how hard this life has been and I'm sure the depth is still to come,  I've felt every emotion that our Heavenly Father has allowed me to feel --I will always praise HIS grace and love for me until the day I take my last breath--when I see him again, I will humbly bow down and say "Thank You, for the sacrifice you gave in my name so I could live, learn, and  try my hardest to love as you do"

Maybe I have not learned enough, maybe I have not tried enough, maybe I have not served enough, there is so much more for me to learn, I see people surrounding me who give and give and give and I wish I was more like that, or I think "now why didn't I think of that?"

with packing out--less swelling

temporary cap on the BAHA

the grafted skin was taken from my upper arm



For those who are interested in the doctor report here it goes--I may have reported on my last blog so sorry to repeat if I did. On Monday,  Dr. Barr's took out the packing and the covering of the BAHA. Not painful, the staples were kinda a pinch or two--but nothing like getting my expander's filled with PK. He said he needed to leave a couple of the staples until I see him next time, and speaking of next time he will be out of town and wants the Chief of surgery in his department to look at my ear and get a 2nd opinion.  Because of time restrains while he was doing the surgery, he could not do any more digging and taking the chance it would open up a whole new 8 hours of surgery, so with respect to that I was pleased that he took it so seriously. He just make it loud and clear that another surgery was a possibility.  The way I feel right now THAT IS NOT GOING TO HAPPEN--I can't do it, I'm done. He found a black fleshy area that he is suspicious of but was afraid if he dug into it, it would end up being another 8-9 hours.  He showed Eric how to change the packing on my ear, it has a particular way it has to be done--the look on Eric's face said it all, I honestly do not want him to have to do this, I wish I new a nurse or doctor close by, someone who sees this kind of stuff and have it not be emotional.  Today while Eric was gone to the SUNS game with Eric, I went downstairs and opened up the medicine cabinet to see it in the opposite mirror pulled out the packing, and for the 1st time I saw it, now I know, I know exactly what Eric and the rest of the world will see--a huge black hole--I literally threw up in the toilet and continued with tears running down my cheeks to pack it the best I could.  Eric just got home and told me I did it wrong--so I'll let him fix it.  I want so badly to call Mary Greer (she's a nurse} I trust and love her but she has so much on her plate right now there is no way I can do that.  I now know why Dr. Barr;s didn't laugh when I asked if people would be able to see from that ear out the other--I was just joking trying to lighten up the mood, he didn't laugh I was merely suggesting there is not much between the two ears--ha ha, sometimes I make jokes when I'm worried.  Today the hematoma has gone down in size but is oozing a blister like stuff, and good news the swelling is going down on the actual ear it self.  

If time could stand still

Thursday December 5th
Eric decided he wanted to go with me today, normally I go to Mayo by myself, I think he knows why now.  The people who go with you are sitting in the waiting area most of the time, and I feel bad when they have to wait.   But he insisted. 3 appointments today, Pre-certification for surgery,  then to talk about the living will and all that jazz.
Finally our last appointment was with Dr. Barr's, I asked Eric to not talk a lot because Dr. Barr's is very busy and normally he covers everything I need to know without me having to ask any questions. The reason I said this to Eric was because I KNOW him, he will talk to everyone, and he did, the receptionist he asked her about things she has no idea about, then the nurse, who again referred him to the Dr., he even asked the same questions to the lady helping us with the living will--then when we were walking out he stopped the volunteer to ask her something----I just grabbed his arm and politely said "let's get going, to our next appointment" I could see his dad in him today--he was a funny man, and loved to talk to everyone.

When we finally did see Dr. Barr's he turned on the screen so I could for the 1st time see inside my right ear, all I really saw was infection--to me it was no big deal really, I have been asking Eric to look at it for weeks but he says "it looks the same as it did last time you asked me"  The last couple of weeks it has swollen up and been tender, but with dealing with my mothers death I have not really paid much attention other than to put new a cotton ball in when it starts to drip.  I have had more migraines than usual, and now I'm wondering about the slurred speech.  Dr. Barr's took out his ear vacuum and started to suck out what he could, I was a little frightened watching the screen and seeing what he was doing, I thought it was going to hurt, it didn't at all.  It also didn't suck anything out-- he then stuck some gadget down the ear canal to try and see what he could--now that hurt.  He then called for Kathleen, his RN to come in and they discussed medical terms that were over my head, then he asked me to take a seat next to Eric.  He said "this is terrible, and in case you didn't hear me....(which I didn't but Eric did) he said it again "this is terrible"  He then showed us a large picture of the inner ear, which I have seen many times before, but explained to Eric and I he has not seen this type of infection come so far out of the canal, he asked if Eric would  stay close by while he is doing surgery so he can get his permission to move forward if needed.  What that means is that if this has gone into the bone he will have to cut out through the bone which will leave a significant indentation in the side of my head.  The good thing about all this is that I'm deaf in that ear so it will not effect my hearing, if I had a normal ear, I would not have any hearing after this surgery.

Monday December 9th, 2013
 Tomorrow I will once again be rolled into an OR at the Mayo Clinic.  I've had anxiety all day today, I told my friend Marian that I feel more nervous about this surgery then I did the night before going in for the bi-lateral mastectomy.  Marian said it's because I know to much now, going in for the mastectomy I had no idea what I was getting into except that I would go into surgery with breasts and come out without them.
My inner ear is pounding, like I can feel my heartbeat through my ear.  I've been taking the antibiotics Dr. Barr's gave me, but it really doesn't seem like its getting better.  Tonight I put the drops in my ear and it felt like they were hitting my skull, the pain was something that I have not felt since I was a little girl.  The veins on my face and neck popped out and I immediately turned red, my eyes teared up, my nose started to run, it's this immense pain I cannot describe.
I'm trying my hardest to have a good attitude, be positive and smile my way through this.  I got a text from a good friend of mine yesterday, she was diagnosed with breast cancer about a year after me, she had a single mastectomy and diagnosed at stage 2b, her text said the cancer is back at stage 4 and has metathesized into several large organs.  I threw the phone when I read it, what happened, why is this happening she was at stage 2, my mind went to a deep dark place where I knew I shouldn't be. I sat on my bedroom floor and cried, I cried myself to sleep.  In my sleep I saw Eric's mom and dad, they looked so happy, I wanted to stay with them, it felt comfortable and Heavenly there--finally, this is where I'm supposed to be, it almost felt like I was playing hide and seek, and not wanting anyone to find me there--Vi held my hand and said "you know you can't hide here, right?" and just like the snap of a finger they were gone, and I woke up--I slammed my hand on the carpet and yelled "no, no please don't find me, let me go back just a little bit longer"
I hope I can go back there tomorrow, I want to visit with them more-- If I could just let time stand still, I would go back to the day Recker was born,  I would hold him and love on him, if I could I would make the clock stop, but then my heart tells me I can't do that, I have to push through and listen to the ticking of the clock and do what I can to be brave. Tonight I feel like my heart is being torn apart piece by piece, I move 3 steps forward and 4 steps back, never getting ahead--I'm sitting here staring at one of my Mayo Clinic Itinerary's, wondering how I got here--I don't want to go, what will happen if I don't go? as these thoughts are going through my head I am ripping up the Itinerary, maybe if I shred it, it won't be real.
A few weeks ago during our Family Home Evening I asked everyone if they knew this was their last day to live what would they do? I'm not sure why I asked them, except that I have been thinking about it a lot since my mother died.  Some of their answers were funny, I think it's hard to let your mind go there.
If I knew it was my last day on earth, I would watch the sun rise and feel the warmth on my face, I'd leave the dishes, I'd turn off the phone and TV, gather all my family around me, make sure each one of them knew how much I love them. I'd hold my grandson's, I'd breathe in the scent of Ezra's baby smell, I'd look into Recker's eyes and talk to him with my heart. We would watch The Sound of Music and eat popcorn as a family---then I'd take a picture with each one of them and tell them why they are so important to me, and why I love them so much--I'd tell them I want no empty seats in Heaven--everyone of them needs to be there--we are an Eternal Family, then we'd go outside and watch the beautiful sunset of the Arizona sky..... and I'd have them sing me to sleep with Primary songs.
Now it's getting late and I need to rest,  tomorrow I will wake up and HOPE for all prayers to be answered.  I want to go to a place where the hurt ends and the healing begins--I want to be  wrapped up in the arms of HIS mercy--I just need this one more time--please, just one more time.

Dr. Kreymerman Leaves Mayo Clinic

My favorite doctor of all time, is leaving Mayo Clinic and moving to North Carolina.  His family has already moved and Friday will be his last day at the Mayo.  Those of you who contact me via email about Doctors to use for reconstruction--HE IS THE BEST--and if you live closer to NC, you are in luck--email me and I will give you  information about his practice.
I will never be able to say enough thank you's to him, he has been an excellent doctor for me.  Although this seems to be a good move for him and his sweet family,  myself along with many other patients he has treated will truly miss him. 
Family is so important, this move for him will bring him closer to his parents, and his in laws. I know his wife Rakhi is happy to be closer to her family too.  Good Blessings are on their way to North Carolina, we will miss you in Arizona.

Dr. Peter Kreymerman, Me, and Heather Lucas P.A.

Saying goodbye is always hard--so I just said "see you later"

Time at Mayo Clinic

Stepping onto the elevator from the parking garage at the Mayo Clinic I am surrounded by sickly people.  A couple who were trying to decide what floor they needed to get off on,  they obviously have not been here much, (I wish I could say that) I simply told them, "when you come to this campus just remember you always have to get off on the concourse level, so always push the big C button, then I can direct you where to go next if you'd like"  with a sweet smile the wife said "oh please, we are not familiar yet with this building and we would love some help"  the only word I heard from that sentence was "YET" I took a look at their itinerary and noticed they were going to the same floor as I was, so I walked with them to the 2nd elevator and showed them the way. Off the cute couple went, she was pushing him in his wheelchair, it was obvious he was in some pain.  After getting them in the line they were supposed to be in I smiled and told them it was a pleasure to walk with them.  Today when I checked in I had a bunch of paper work to fill out AGAIN they just wanted to make sure I was not pregnant....serious.....this is serious stuff.  laugh, just laugh I did.  Seems like a lot of wasted paper, I check off the same box every time ✓☐ hysterectomy ✓☐ cancer  ✖☐ could you possibly be pregnant? Kinda repetitious if you ask me,  I always laugh and say those eggs are hard boiled by now.
No waiting this time, the receptionist took me straight back to the nuclear medicine department.  No getting undressed from the waste up or down, today I get to go in fully dressed YAY.

This floor is much better than the 3rd floor

A young girl took me back into the CT scan room, and asked me to lay down while they preformed the necessary  testing Dr. Barr's had ordered.  I love the care I get at Mayo Clinic, yet sometimes I feel like a number to them.
Perhaps they don't want to know why I need this CT scan, or they don't want to hear about why I am getting this ordered--I wouldn't know because today they were all business, in and out. Today I was glad I didn't have to go to the dreaded 3rd floor. No now I get to make the transfer to the other Mayo Clinic campus--excited to maybe get a chance to see Dr. Kreymerman and Heather, if they are not in surgery.
  My bone scan was put on hold, along with the MRI and visit with Dr. Aguilar my neurologist.  Dr. Barr's is very prompt, he shows me the CT scans, and explained all that we were looking at.  Ist off the carcinoma is still there but it has shrunk slightly, he still recommends having it removed along with the prosthesis I have, which has dislodged it self from the original position and is actually doing no help for someone like me with SSD. (single sided deafness) The prosthesis is probably what makes my ear drain, and itch, so that will come out during surgery along with the carcinoma and the implant of the BAJA.  I am losing quite a bit of hearing in the left ear, so over compensate by leaning my head towards him to be able to hear what he is saying--he told me that--I never noticed until then but have caught myself doing it today. Dr. Barrs will send me to see a special surgeon for the nose problems--nothing seems to help.
I made an appointment with Dr. Freeman for my hip and back pain.  !st I have to get my dental implant done with Paul Kelly, I seem to get a breast infection every time I have dental work done--supposedly this is common for breast caner patients with ex panders,  Maybe the antibiotic is not strong enough, who knows.  It has been almost a year since they started my dental implant, I will finish with my last surgery at the end of September, then in October have the finishing touches done with Dr. Bryan Goodman.  I told Dr. Barr's I want to make my surgery after this dental implant is taken care of because the breast infections are serious enough to send me back to Dr. Kreymerman, not that I dont like to visit him, but not for this reason--he and Heather explained to me the importance of getting those breast infections taken care of right away as they can cause additional surgery and probably be needed to be removed again.  I told him "who cares?"  he smiled but firmly told me "I do, and so will you"
So back to Dr, Freeman, more tests will be on the schedule soon, more interest this time in my back problems, which could be causing my hip problem.  All I know is I cannot stand for more than 10 minutes without my legs collapsing on me...yes they buckle up and down I go....funny now? YES.... I think so, but Dr's don't seem to think so, why are they always so focused and serious?  They need to loosen up and laugh with me sometimes.  It all seems more than what it really is, I'm fine--just getting old and need to get these problems taken care of.  No big deal, at least they know it can be taken care or so no more pain--except for recovery, if they end up dong a hip replacement.
I am taking baby steps towards a full recovery right??? I hope my prayers are being heard, lately I feel like I need to change the wording in my prayers--

I'm 50 today

OK I said it out loud, I'm 50!

Today I am spending the day at Mayo Clinic,  before starting this story I just want to explain something about Mayo Clinic, every patient has to give their full name and birth date every appointment they have, so if you have 5 appointments in one day you would say it 5 times, my 1st appointment is for labs, Latisha is drawing my blood today, she called me Montoya a few times even after me repeating my full name and birthday,  I didn't have the heart to correct her however, after her 5th poke and no vein was working I wanted to yell "my name is MONYA it's my birthday, don't make me cry, just find the freakin vein"  6 pokes later she found it, sucked  out as many viles as she needed  and I was on my way to appointment number 2.

Welcome Back

As I wait in the large area with coughing sick people, I decided to put on my mask.  I heard a lady checking in saying "today is my 90th birthday" boy I hope I live to be 90, she was so cute and proud of the brown scarf her daughter had gotten her.  Looking around the room I realize I am most definitely the youngest patient in the room-- hallelujah --  the grandpa sitting in front me has the largest ears I think I have ever seen-- is it true they keep growing with age? If it is, he looks 90,  I think if makes it to 100 his ears will far out grow his head-- I snap back to reality when they announce my name. You know you're a frequent flyer with Mayo when the person announcing your name remembers you from previous appointments,  he even pronounces my name correctly, then proceeds to say "happy birthday, oh your 50 today" he said it as though it's amazing, WOW image that, you made it to 50. Well what did I expect from a 20 something year old?  looking at all the people in the waiting area, staring at me I realize I'm young in comparison ha ha so it could be worse. Good to know!

"Undress from the waste up" easy enough I wish I had a nickel for every time I've been given that line over the past couple years. The cute girl doing my ultrasound today, is super quiet, I tried to crack a few of my silly jokes, but could not get a smile or even a grin out of her, man she is all business today.  Ultrasound done now waiting for the biopsy. As I am writing this post for my blog my cell phone rings (definitely a NO NO at Mayo) I scramble to answer as fast as I can, I can feel the breathing down my neck as other patients and staff members stare at me as if to say "turn off your phone please" it felt like I was sitting in the Chapel at church and my cell phone goes off during the sacrament--seriously, they take cell phone use in the waiting area a complete and utter lack of courtesy--by the time I could get the phone and read it was Mayo Clinic calling, I almost wanted to laugh out loud--this is ironic--they were calling to tell me my white blood cell counts were really low and the doctor was cancelling my biopsy for today--I'm not sure if I should be happy or sad, it's my birthday and I really did'nt want to have a biopsy today, but I know I am going to worry until they finally do call me back for the inevitable biopsy that is going to happen, I am told to keep a mask on in crowded places or where I feel vulnerable to bacteria--are you kidding me? that pretty much describes everywhere I go and every person I come in contact with.

Dinner with Eric & Family

Surprise visit from Mike

Love of my girl life Jenster

The Family & Friends I love so much !!

My favorite part of my day was spending it with my family and close friends.  When I turned 20 I thought anyone over 30 was old, if you were in your 40's I could not relate to you at all, 50's you were just plain senile, turns out in my 20's I knew nothing, 30 is a baby, and 40's well the 40's was a blurr as I raised my teens and was diagnosed with cancer. 50, well being 50 means I am day closer to my 60's, not young, not old just in the middle trying to survive.  I have dear friends who visited with me and a family who surprised me with a dinner at BJ's then a cake from Nothin bundt Cakes-thanks Kaitlyn for organizing it all, I loved every second of it.  I loved seeing Jenny and visiting with her about pat birthdays when we thought we knew so much--but my favorite gift was a book my family gave me, they all wrote in it 50 things they love about me--it brought me to tears and made me laugh, I will treasure that book for the rest of my life--I love it.

Life Moves Fast

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

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

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

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

MRI

I spent the day in a gown at the Mayo Clinic today.   Pretty proud of myself, I didn't have to take any anti anxiety medicine to get me through.  Good news, my insurance is still going to cover me at Mayo--YAY.
Tonight, I'm in some pain. The process was not what I was prepared for, they have to inject some dye into the area around the bone, the contrast  helps them see what is going on in my hip bone.   I really liked the doctor, he explained each step of the way what he was doing.  They numb the area first, then inject the dye,  he told me to let him know if I had any pain.  Then..... he hit my hip bone twice with the needle--OUCH--
After talking to me about side effects, the nurse got me off the table and told me to walk down the hall for the MRI.  There was a strange feeling in my leg, probably because it was  numb.
They took me immediately in for the MRI.  Oh no, I remember this machine.  I asked if I could listen to some music, being so claustrophobic I was afraid of having a panic attack.  For the next 45 minutes I listened to the Eagles, and suffered through the  pounding noises of the incredible MRI machine.
As I sit here, in my bedroom, I can't help but think "when is this going to end?"  I rub my hand over my port and wonder if I will ever be free of this VILLAIN or the side effects.

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"

Mayo Clinic Symposium Living with Cancer

Do normal people go to cancer symposiums on their birthday? That answer would be.... Probably NOT. Me, I'm not your average normal person, it was exactly what I wanted to do and I'm so glad I did. Knowledge is empowering I want to soak in every bit of information I can about the VILLAIN in me, is it possible for he and I to live together without recurrence on his part? After listening to all the incredible doctors at Mayo Clinic, I walked away feeling like I'm in complete control of life and whether or not the cancer comes back in days, months or years I have no regrets.

I was fortunate to hear from all of my personal doctors at the symposium.  I'm really not a person who normally likes to sit and listen to lectures, however, this was close to my heart and I didn't want it to end--the information I got was invaluable for me.  There is something  to be said about sitting in a room full of cancer patients and their care-givers.  When we broke out into our disease specific sessions, Dr. Northfelt said he wanted it to be more of an informal session and allow patients and care-givers  to ask questions.  Dr. Pockaj is the surgeon who performed my mastectomy she spoke 1st, one of the most important things I took away from her speech was that 35% of patients find their own lumps by doing regular breast self exams-- I am a firm believer and endorse this frequently on my FB page.  I was told one time that a doctor told a patient she does not need to be doing her BSE because they are ineffective--- I'd say 35% is a significant percentage so I will continue to endorse.  The other thing I learned is that after a bi-lateral mastectomy (which is what I had) there is no need for mammograms.

Dr. Michelle Halyard was my radiation/oncologist she spoke next--I loved all she had to say and it confirmed to me that every fear, anxiety, memory loss, insomnia, pain, joint  muscle fatigue and loss of appetite is normal.  Imagine my surprise when I found out I was NORMAL-- well at least when it comes to being a cancer patient--I can't get anyone else to tell me I'm a normal person in "real life"

Next up was Dr. Northfelt, it's no surprise that I have not been happy about the fact that I do not really get to see him--I have been looking for another oncologist--Not all cancer patients feel the way I do--I am someone who NEEDS to see her oncologist at least once a year, and I have asked for this but been told that because Dr. Northfelt is also the lead oncologist for Mayo Clinic he is very busy and has administrative responsibilities too. He is a wonderful Dr. I remember the 1st time I met him I felt so comfortable, he made me feel good about my diagnosis and gave me hope for my future--I loved that he was my doctor--after talking to other cancer patients, not necessarily from Mayo Clinic, I have discovered that they all see their oncologist--I know patients who are just fine with seeing the PA (physicians assistant) they don't want to bother with the doctor, or that seeing the doctor creates anxiety or unwanted fear--I AM NOT THAT PATIENT--seeing him continues to give me hope, helps me to feel like he is completely on the same page with me and that he knows who I am, I'm not asking for much just once a year, as much as I am at Mayo that is fair--right?
OK so back to Dr. Northfelt-- before the break out session started he approached me and thanked me for the tie I gave him for Christmas--I was shocked that he even knew who I was, but gave me comfort knowing he did.  He lectured about health and fitness--but before he started he said something that brought tears to my eyes, he said that a patient he had not seen for awhile had just told him she had decided to see a different oncologist and that Dr. Northfelt was not providing her with the care she needed.  He seemed really sad about this information, it touched my heart and brought me to tears.  This is the reason I wanted him specifically for my oncologist, he has a heart.  What I took from his lecture is that I am doing everything he asked me to do, he talked about the book Anti Cancer, he again confirmed to me that cutting out sugars, fats and having regular exercise in a daily routine will help lower the risks of recurrence--walking at a natural pace 3 hours a week also reduce the risk of Breast Cancer relapse.  I'm in check with all he suggested, I know if my cancer returns I did all I could do--NO REGRETS.

Maryann Forrett is the PA for Dr. Northfelt she spoke next--her subject  was intimacy and sex during and after cancer treatments--kinda an embarrassing subject to talk about but she was eloquent and touched on everything that I had questions about--I did raise my hand and ask a few questions--I prefaced my question by saying "I know you all have had sex and you all want to ask what I am about to say but are too embarrassed so hear goes" and I asked my questions, I don't really feel comfortable sharing those on my blog, in that room though it was OK because if there is one thing I have learned all breast cancer patients share a bond, an understanding of the changes that occur in your life while going through such a difficult time. Intimacy for so many patients changes, for breast cancer patients especially, for the obvious reasons your body has now changed, I don't care how much you love and trust your spouse or significant other the fact is there are scars YOUR BODY IS DIFFERENT and exposing that vulnerable part of who you are, as a woman,  can truly be devastating.  When I had my mastectomy I did not want Eric in the room at the hospital I asked Dr. Kreymerman to have him leave the room while he examined me, I know it hurt him I could see it in his eyes, I knew he loved me, that was not the problem, I didn't want him to see  what I could barely look at--it took me weeks, maybe months before I would allow him to see me--that moment when I allowed him to see what I could barely stand to look at in the mirror was an intimate moment for both of us--intimacy is so much more than sex.
For the not so obvious reasons, an estrogen fed cancer changes everything, it is a part of what makes women sexually function correctly, and for me estrogen has to be blocked with medicine--the side effects for these medicines are a list I don't even want to bore you with--it's awful to not have control over how our bodies function, Heavenly Father created us perfectly and when something is missing or not working it all goes to heck--hot flashes, anxiety, depression and a low libido are part of that.

Pauline Lucas who was my physical therapist had a quote that I love  "Believe in Life, In Your Life" she spoke about meditation, health and fitness.  I love her, she was such an inspiration to me and I loved having my sessions with her--I miss her.

Overall, I learned to live for today--celebrate TIME, and hold on to all the good memories, make connections with people be meaningful, remember good and fun memories and write them down to reflect back on days when you need to be uplifted. Find something to laugh about everyday, it's the best medicine. My quality of life depends on ME and me only, it's all about quality not quantity.
These are my four F's
FAITH
FAMILY
FRIENDS
FUN
if anyone is having a difficult time with any of these,  its time to reevaluate  and rediscover who and what are important to you.

Oopsie Daisey..

I haven't blogged for a couple of weeks--oopsie daisey.  Honestly it's been incredibly busy in my life.  I am working 4 days a week now, lots of flights are being cancelled this time of year because of weather back East--when I talk to those stranded people I feel bad for them--but grateful that I was born and raised in Arizona--I endure the summer heat for a few months so I can love, love, love the winters here.  I also have been spending a bunch of time at the Mayo Clinic in physical therapy a couple times a week with Pauline.  Tomorrow I will going to the Mayo Hospital directly after work to see Dr. Freeman, he will bring his syringe full of pain meds to be injected into my right hip and lower back.  Can you say ouch?  Hopefully this will help with the pain and I will able to walk without a limp.
(the above was written yesterday)
 I drove to Mayo Hospital today, not really knowing what to expect.  As I walked through the doors it reeked of chemo and hospital smell.  I sat in the waiting area across a man with an oxygen tank, he looked miserable, and things were about to get worse as he ran out of oxygen--his wife was yelling hysterically and the nurses were scattering to get him a new tank.  Poor Mr. Brown, I know his name because they repeated it over and over again trying to get his attention, I really thought he was going to die.  Behind me a woman was on the phone relaying a message to her family that someone "HE" had just passed away and they need to get to the hospital..to the left of me is a lady having an anxiety attack, by now my mind is thinking "concentrate Monya, don't pay any attention  to what is going on around you" I wanted to cover my ears with my hands and sing a song to drown out all that was going on around me. The phone rang, it was Eric checking in on me, boy was  I happy to hear his voice. Finally they sent me up to the 5th floor, pain clinic on the elevator we made a couple of stops, the woman who had a death in the family was on the elevator with me, she was crying I wanted to hug her, but felt like I needed to respect her boundaries.  We made a stop on the 2nd floor and the Mayo Pastor got on the elevator, I noticed she was carrying a Bible and book labeled How to prepare for death.  Whoa, today I'm getting a reality check, Mayo has a way of doing that to me.  She only went up one floor and I noticed she was on the patients floor, probably going to visit a family--I was sad about that.  We continued to the 5th floor, the lady with the tears went left and I went right--just like that those people were gone, they have no idea what an impression they left on me.....and I will likely never see them again.
I approach the pain clinic check in and they hand me a stack of papers to fill out, seriously???  what else could they possibly need from me, they know everything there
is to know, they've taken my boobs, my hair, my uterus and 100's of hours of my time. I will be waiting for an hour, today instead of anxiety meds I am going to read my scriptures while I wait, it worked.  After an hour and a half of scripture study they called me back for the procedure.  I really like Dr. Freeman, the procedure was not as bad as I had anticipated, but lets face it no one likes to be poked and prodded with needles.  I decided as I sat in the recovery room that for today, just today I am  tired of PROCEDURES, NEEDLES, INJECTIONS, & MAYO.  Even as I type that out I feel guilty for feeling that way, I have so much to be grateful for, I am pretty darn blessed to have Dr. Freeman on my team of doctors, especially when there are so many people struggling today at Mayo.

This is a life long Journey🚩

Yesterday Blake spoke in church, he did a beautiful job speaking about the experiences he has had the last 2 years while serving the people in the Dominican Republic.  I was touched listening to him talk about the power of the Atonement in his life-it seems the best conversion story was his own.  His Spanish is flawless, I love to listen to him.  Someone said to me very non-chalantly "so glad you could be here today" at 1st I thought "what are they talking about? I'm here, every week, what does that mean?" then my thoughts immediately went to "you have no idea how glad I am to be here"  HERE as in here on earth, still alive able to see the success of my son, to hear him speak in Spanish so fluently, to see his passion and love for what he believes in,  "Oh yes, I am so glad I'm here too!"
This morning I woke up, knowing I was going to spend the day at Mayo Clinic, I have this love/hate relationship with that place.  I love it for obvious reasons,  and I hate it for more obvious reasons.  The drive to Mayo was much shorter than I expected, my thoughts were wondering--kinda scary for anyone driving down the beeline highway today--some of the things I was thinking about -- the mountains are beautiful, the dessert is dry and I am wondering who I will meet today.
 The 3rd floor smells like always--of sickness and chemo,  there is a stench difficult for me to stomach, especially when I am so nauseated anyway--as I sit in the waiting area I see, like always sick people, some look really, really sick I wish I could hug them and tell them everything will be OK, but I know just as well as they do there are no guarantees with the VILLAIN.  I'm not there for long, my name was called within a few minutes as I walk into the infusion lab and see it loaded with people today, it made my heart sad for each of them--my nurse today is Allison, she is pregnant--seriously? can she smell what I smell?   I wonder how does that work for her?  So... I asked her "do these smells bother you?" her response "what smells?" WOW what just happened?  it's hard to believe she can't smell the same things I smell.

Linda-Stage 4 Colon Cancer-What a blessing she is to
her family--so happy and positive

Jenny-- stage 1 Breast Cancer--her husband shaved
his head to match hers--they have a 17 month old baby

Dan-stage 4 colon cancer-metastisized to his lung--
so happy and full of life

Sandy--stage 4 extremely rare cancer--going in tomorrow
to have his bladder removed--will have to wear a colostomy
bag for the rest of his life-yet he made me laugh--
 I loved visiting with him

The girls helped me put some treat bags together (and when I say "girls" I mean Kaitlyn and Haleigh Brownlee)  for all the patients in chemo today, after Allison accessed my port and took all the viles of blood she needed I went around to all the patients and visited with those who wanted to talk, gave them a snack bag and was inspired by each and everyone of them.  This is my favorite part of coming to Mayo--these people are facing life threatening diseases yet they smile and are so positive about life--perspectives change, and I loved all the perspectives today.  Jenny is also a patient of Dr. Kreymerman, she and I high fived each other--then talked a little about him--all good of course.  In case you didn't know I love Dr. Kreymerman-- ha ha.
After spending more than an hour and half in the infusion lab, I was off to get my bone mineral analysis, and X-Rays.  I have always wondered why they make me undress and put on the hospital gown, I thought those machines could see through clothes--they can see through clothes at the airport.
By now I have a splitting head ache--I think trying NOT to be effected by everything going on at Mayo, I get the opposite effect--every little thing I see, hear and smell drains me.  I started early this morning, looking at my watch as I wait for Maryann I can see the time is now 2:30, I won't be out of here for a couple more hours.  These are questions I have for Maryann:

1.  Can I see Dr. Northfelt at least once a year
2.  Why am I so nauseated
3.  Why am I in so much pain, legs and hip
4.  Why does everything taste like metal
5.  Why am I having headaches and insomnia

These are the answers I got from her:

✓1.  Yes, I need to see Dr. Northfelt, its not too much to ask, especially since I will be seeing him for years to come, its important for me to have the reassurance from my oncologist once a year.
✓2.  The pain my body is in is causing the nausea
✓3.  The Xray is showing a spot on my hip bone and lower back caused from the osteoperosis,  neuropathy is still in my legs  caused from the chemo--
✓4.  Forgot to get answer about that one--
✓5.  Not sure about the headaches, she wants me to stop taking the Arimidex for 2 weeks and see if they go away, insomnia is part of the process--its not going away.

Maryann is going to call me in 2 weeks to check on me, and get an update about some of the conditions.
I'm also being referred to the Physical Medicine unit at the Mayo Clinic in Phoenix. Maryann told me they will be able to get to the bottom of the spots on my hip and back.   Leaving Mayo today I'm satisfied that all my questions were answered.  I loved meeting all the wonderful patients in the infusion lab, I realized for the 1st time today that this journey is life long--sad but true.

Do Something...

There is always  beautiful piano music at the Mayo Clinic

This woman was awesome, she was diagnosed with Breast
Cancer 13 years ago, the VILLAIN left her alone and now
He's back...however, she is positive and happy.

Look at this beautiful woman, stage 2 breast cancer

I instantly felt comfortable with this guy,  2nd time around
for his lymphoma, and so positive ♥

I know I've said this before and I want to say it again, I truly think people come into our lives for a reason. Some just for a season or two, some for longer, however, for me  these people are a huge part of who I am.  The influence they have on me whether good or bad, is important.  Women and men I have met at Mayo Clinic have become dear friends, they are people who have touched my heart and soul, people who understand, truly understand my fears and doubts about the future, some of them have passed on and left this world we live in,  the VILLAIN took their lives.  Everyone of these people left a lasting impression on me, they were positive and happy even knowing that their lives were coming to an end soon.  Every person who has ever walked up to me and asked to say a prayer for me, I love them.  I have recently had connections with women who I know are going to be life time friends. Many of you have asked me about my friend Trystan.  I am happy to say that she is out of the Mayo Hospital and although she is not fully recovered she is at her home in Hilton Head and enjoying the beautiful sunrise and sunset at her beach house.
Yesterday, I opened a fortune cookie and this is what it said:  "Do something unusual tomorrow for the benefit of others"  Since I knew I was going to be going to Mayo Clinic I decided to do something special for all the people who were on the 3rd floor, chemo lab today. I got 40 Easter Bags and filled them with grass, crackers and Easter candy Kaitlyn Haleigh Brownlee and My Haleigh all helped me fill them up and tie them-Thank You Girls

Kaitlyn, Me, Haleigh B and Haleigh Williams

 Anyone who knows me or reads my blog knows how I despise going to the 3rd floor, stepping off the elevator there is a  smell that is distinct and makes me sick to my stomach.  It's been a year now since I finished chemo at Mayo and still I cannot get used to that smell.
On my way to Mayo Clinic I was driving up Shea Blvd. almost to Mayo, I suddenly had a panic attack.  I've got to learn how to get my mind somewhere else before pulling into Mayo, this attack I could not take any medicine since I was driving, I could hardly breath.  I finally got it under control, I took the elevator to the Lower Level to have some lab work done.  As I waited I was reminded of the sickness that is in our world, so many of us, including me don't take enough time to reflect on our lives and the importance of loving every second we have with family and friends, or paying close attention to the needs of others.  I have so much to be grateful for. 
 My lab work is over, I'm walking through Mayo with this huge Anthropologie  bag full of treat bags, I see people looking and I'm sure wondering what I'm doing with all of those, one man asked I told him what I was doing, he said "bless your heart" I then handed him a bag and said "bless YOUR heart"

My bag of goodies

I had some time before my next appointment so I went to visit Chris and all the radiation specialists who helped me during radiation last year.  I have not seen them since my hair has grown, they didn't recognize me, it was so great to visit with them-some of my favorite people at Mayo are in radiation.

Chris, Me, Lindsay

One of my new friends diagnosed with stage 4 ovarian

Two more new friends, when I explained why I was there
tears filled the eyes of these wonderful people
He is the cancer patient, but I can't remember what
type or what stage.

When I stepped off the elevator onto the 3rd floor, I wish I could say I didn't smell chemo or sickness in the air..... I DID.....but for some reason, today it's OK, I'll deal with it without another attack.  I check in to get my PORT flushed, then with permission I walk to each and every chemo suite and introduce myself, tell them I am a survivor and that I finished chemo a year ago, as I hand each one of them a treat bag I can feel a sense of understanding and strength from every patient.  I was able to spend a few minutes at each suite and talk about the VILLAIN diagnosis, side effects, radiation, hair, and moving forward.  I love these people, they get it, they know what it's like to be diagnosed with a life threatening disease, from each and everyone of them I heard nothing but positive HOPE and FAITH.  The one who touched my heart the most was Mandy she is 29 years old from Colorado, diagnosed with Adrenal Cancer, extremely rare.  She was just married in September, her mother, sister and niece were all there supporting her, as we talked tears filled my eyes talking about the changes that have occurred in my life, in her life and in the lives of most everyone who is diagnosed with cancer, we are given a new perspective on LIFE, and LOVE is sweeter than it has ever been or will ever be because of the growth that is inevitable during the fight of your life.  This visit was therapeutic and emotional for me.

This is Mandy in the white tank top and her sister

When I finished in the chemo lab I felt good, it was a wonderful morning to talk to all of these amazing people ..... I love them ..... I really, really do

What I saw on my arm today as I left the Mayo... my watch,
my bandage from the blood tests, and the most important
My LIVE FREE bracelet that constantly reminds me
of where I've been and where I'm going

Me and Maryann

I went to check in for my visit with Maryann Forrett, (Dr. Northfelt's Nurse) I had the talk about my sore hip, insomnia, head aches and whatever else we needed to talk about.  She ordered an X-RAY of my hip. She said she will call me and let me know the results, until then..... be happy :)


(After I posted this, I got a call from Maryann, the results from my X-RAY came back and they found a spot on my hip, the word CANCER was mentioned, but until more tests are run they are not conclusive. She said the Doctor ordered a bone scan, brain scan, MRI and PET scan, I'm not sure when they will be, I have to wait for a scheduler to call me from Mayo, probably tomorrow.  Pray for me.)