Brain Scan at Mayo Clinic

 

FRIDAY, NOVEMBER 28, 2014

Brain Scan-Mayo Clinic

I arrived at Mayo Clinic early this morning, and can I just say that the people who drive to work between 7–8 am every day ... I am so sorry. It was stop-and-go the entire way to Mayo Blvd. I will be getting brain scans every three months. All that really is is an MRI, and 45 minutes of pounding and hammering on my brain--I survived. Not my favorite thing to do, but necessary for Dr. Barrs to see what is going on between my ear and my brain ...not much.

Let me explain this, doozie. When I arrived at the hospital, they took me in to prepare me for the scan. Included in the visit is an IV. I warned the nurse not to use anything less than a twenty-two needle and to not use my left arm, wrist, or hand. She smiled and assured me she knew what she was doing. I then announced, "Please listen to me, I know ..." then she plunged the size 20 needle into my left hand, and immediately I concluded, "you just blew out my vein" The nurse then said, "How did you know what size needle to use?"  "This is not my first rodeo. After 5 years of being poked and prodded, I've learned the left side has no veins left. If you had let me finish before you  stuck me, I would have let you know; my experiences have taught me" She then advised me, "Since you've had a port on your right side, you shouldn't use the right side, I'm sure your oncologist has told you not to use the right side for at least 10 years since your lymph nodes were removed?" "Um, no, he has never told me anything like that" "Who is your oncologist?" I looked up just in time to see a familiar face, and she recognized my face, also. I said, "Lindsay, right?" she hugged me, "Yes, how did you remember my name?" "I'm not sure, I just did, but I'm not sure why or who you are." She said, "I was your nurse on the fifth floor when you had your nerve go dead. How are you doing?" "I am fantastic, except for this blown-out vein ...... just here for a brain scan" "Oh dear, I'm sorry about the vein. Let me see if I can get a smaller needle and use the other hand." The previous nurse disappeared, and Lindsay finished. What a great surprise; I love running into the great staff who have served me over the years.

I love Mayo Clinic because they always have my results on the same day. I ate lunch, then met with Dr. Barrs. He is excellent; he always has a big smile and a sweet, compassionate heart. The brain scan results looked good, the cholesteatoma has no regrowth, and there was a little liquid build-up, but nothing for me to worry about. Dr. Barrs talked to me about facial paralysis; he wanted to know how I dealt with it. It's hard to say I'm OK with it; I'm not. Of course, I wish things were different; I explained I am trying to deal with 'being OK' if the nerve does not fuse back together. I added I'm not used to people looking at me and then quickly looking away. I have gotten to the point that I look away now, so they will not have to be uncomfortable. He then looked at me with a big smile and acknowledged that what I felt was expected but that he loved who I was my personality, and my heart. It was a good boost for me. I needed to hear exactly what he had to say.

I will be going to Cleveland Clinic next week for some more surgery on my eye; I think when I get home, I will finish all the other surgeries at Mayo Clinic.

Something Amazing

MONDAY, OCTOBER 13, 2014

Something Amazing

THIS WEEK, I RECEIVED EMAILS ASKING ME TO EXPLAIN MORE ABOUT PAST POSTS. WILL EXPLAIN NOW.

I HAVE BEEN DEAF IN MY RIGHT EAR FOR 48 YEARS DUE TO A BLOW TO THE HEAD AT AGE THREE; FROM MY BIRTHFATHER (COLBY); IT HAPPENS TO BE THE SAME EAR I'VE HAD MULTIPLE SURGERIES ON THIS YEAR. 

MY LEFT EAR IS MY 'GOOD' EAR. EVEN THOUGH THE BAHA IMPLANT IS ON THE RIGHT SIDE, IT TRANSMITS SOUNDS WAVES TO THE GOOD EAR ON THE LEFT TO IMPROVE MY HEARING. MY RIGHT EAR IS NOW COMPLETELY EMPTY, WITH NO INNER CANAL, NO EARDRUM, NO NOTHING; THE DOCTOR TOOK SKIN FROM MY HEAD AND MADE A NEW-LOOKING EAR FOR ME.

Today, something unique happened to me. I had appointments at Mayo Clinic, and I met with Kelly Conroy in the ENT department to have my Baha hearing device finally connected to the implant. I was not prepared for what would happen; I usually go to Mayo Clinic without thinking much about why I'm there or who I am supposed to see; I just don't let my mind think about it unless I'm going to the third floor then I need to prepare myself.

I have met with Kelly before for hearing tests and to be fitted for my Baha, but it's been a year since my implant was placed, and so much has happened since then. The Baha has not been on my mind. Today, I was blessed with a Tender Mercy from Heavenly Father, which I needed. I now have a new person to love at Mayo Clinic, I will never forget today, and I am so grateful Kelly Conroy was the one I shared this moment with; she was so compassionate and loving.

Kelly placed the device on my implant and then adjusted her computer to customize the hearing device to my needs. What happened next was amazing; I wish I had it on video, or Eric could have shared it. I could hear everything clearly and crisply when Kelly activated the device. I smiled, and we sat and talked for a while so she could make sure everything was working well. We both cried as I explained some of my emotions this year. This was not even the impressive part. Once I got to my car, I could not believe the sounds.

 
I opened the door to get in the front seat, and when I started the car, my music was so loud I quickly turned it down, smiled, and backed the car up--and the sound of putting the car in reverse was something I had never heard. 

As I drove down the beeline highway, I noticed a man walking; I pulled over and asked him if he needed help. He assured me he had AAA on their way and thanked me. I wondered, "why is he talking so loud?" I was overcome with emotion; I had to pull the car over a few miles away, get out and walk through the wildflowers; never had I seen anything more beautiful. I looked at the sky, brilliant blue with fluffy white clouds, and cried. I heard a bird chirp; it was beautiful. I thought I knew what that sounded like all these years, but today it was more apparent than I had ever felt or heard it. 

I could feel His love for me. He loves me, He really, really loves me, and not only me, but He also loves my biological Father, Colby Belshe. I could feel his presence; this was more than an emotionally draining day for me, but at that very moment, standing with my arms high, twirling in the Arizona desert, I could feel that finally, Colby was happy; his daughter could hear. 

Colby never could forgive himself for being the fault of my deafness, and I forgave him. I don't remember being angry with him; I only knew partial hearing. I told Colby many times that I didn't blame him, was OK, and didn't blame him, but even to his death, he took that guilt. Today that is over for him; he watched me, I felt him, and I know he can now move on. Thank you, Heavenly Father, for such a beautiful gift you have given me.
I picked myself up, got back in my car, called Eric, and could not believe how loud he was; I smiled, tears running down my cheeks.

When I got home, this is when the real magic happened. I opened the door, and I heard the doorknob turn. I smiled. When the door shut behind me, I screamed. It was so loud, it scared me. I did the same thing when my phone rang, I had "Happy" as my ringtone, and I about jumped out of my skin, but I smiled. Walking across my wood floors, I heard every step. In the kitchen, I opened the microwave and shut it several times. I did the same thing with the refrigerator, and I smiled.

When my hand touched the staircase to walk up, I heard my hand even softly dragging, and I smiled. I sat on my bedroom floor weeping, alone, just as it should be. I'm sure it was not too pretty. I could even hear the carpet as I ran my hand across it; all I could say was thank you so much for this unexpected miracle. I pulled the string on the dental floss tonight, and the sound was nothing I'd ever heard before; I did it repeatedly until the container was all gone. Turning the pages of my scriptures was terrific; I listened to every crinkle and smiled. I sat on my bed in awe of what my Heavenly Father had blessed me with at such a critical time. I wanted to shout at the top of my lungs, HE LOVES ME. I don't think I have smiled like I did today for so long, and even though it was a half smile, I didn't care; I couldn't help it. Nothing, and I mean nothing, is as beautiful as being able to hear everything; all the creations He has created for us to see, hear, feel, and smell we take for granted.
I can't wait to hear more things. I immediately turned my primary music on, my favorite song has always been My Heavenly Father Loves Me...I cry every time I hear this song.

My Heavenly Father Loves Me:

Whenever I hear the song of a bird,
or look at the blue blue sky,
whenever I feel the rain on my face
or the wind as it rushes by.
Whenever I touch a velvet rose
or walk by a lilac tree,
I'm glad that I live in this beautiful world,
Heavenly Father created it for me.
He gave me my eyes that I might see
the color of butterfly wings,
he gave me my ears so that I might
hear the magical sound of things
He gave me my life, my mind
my heart, I thank Him reverently
for all his creations of which I'm
apart, yes, I know Heavenly Father
Loves me.

Today these words mean more to me than ever before. I can't help but think that Heavenly Father has been waiting for this day, preparing me, and refining me, preparing Colby, too, as he has suffered with this guilt for so long. I am happy for him too. I cannot stop crying. I am so blessed the tears are flowing like a river with no end in sight. I just want to open and close things. I want to hear my grandkids laugh, oh I can't wait for that; I thought I loved those belly laughs before, but I have a feeling as I get used to this new blessing, I am going to continue to have tears, learning so much of what we take for granted. So, if you see me tear up, I'm OK. I'm just hearing something new and enjoying it for the first time. I don't know if I can say thank you enough to Him who gave me this gift today, and I know He is smiling down on me too. I've been so lost these last few months, trying so hard to understand what I am supposed to do? What am I supposed to be learning? I will continue to ask, but not today. I am grateful this is a feeling I will never ever forget.

LABELS: HEARING, HOPE, KELLY CONROY, LOVE, MAYO CLINIC, PEACE 

Find Me-Frozen Inside

Monday, SEPTEMBER 29, 2014

Find Me-Frozen Inside

There have been times when I've wanted to curl up and stay in the safety of a cocoon, much like a butterfly does. I've had days when I feel locked in a glass house with no way out and everyone watching. I want to fly free; I'm emotionally healing much slower than I expected. I'm trying hard to break out of the prison walls I've built around myself. I wish I had someone to talk to. I need to gain my grasp and be more authentic with people. I hide how tearfully hard it is for me not to be able to smile a big full smile; my frailties are being masked by a strong woman who has difficulty admitting her weaknesses.

I sometimes ache, trying so hard to hold back smiles or laughter for fear of what I look like to others. I caught myself wanting to laugh when I heard Ezra's huge belly laugh--he is so cute--but I caught my reflection in the mirror of our entryway and suddenly realized, "this is what other people see" This immediately took me down to a low I can't explain. I still feel so much Happiness in my heart & want to share it, especially with my grandchildren, but for some reason, I've let the adversary control my thoughts. The confusion contradicts what I feel inside, I don't understand it, so I do not expect anyone else to understand it. I'm trying my hardest to Live Happily. I love serving others; it warms my heart and lightens my load.

I love the Happiness Movement the United Nations agreed upon; the decision was made that the day will continue on March 20 of every year. I know and believe with all my heart that one person can make a difference, a rippling effect that can be wrapped around the hearts of people worldwide, regardless of race, culture, religious belief, or lifestyle. I am an ambassador of Happiness, but I still want to know if that contradicts how I feel on some days. I feel like I am on display; I see how people look at me and then quickly look away. I know because I, too, have done it. I've said on this blog that I don't believe people, in general, are vindictive or mean any harm; it's natural for a person to take a double look at something that is not what they are used to seeing. I just never thought I would be the one on display. I see them look, then look away and whisper to their friend, mother, or neighbor; they both look and quickly turn their back to me, usually because they know I have just seen what they did. The only thing that really holds me together is knowing He sees me, the REAL me--He knows I want to be me again; the sad part is because of what I've experienced, I know I will never be the same again. Although I didn't ask for this experience, I'm living it. I also realize that I have control over how I deal with the inner aching I continue to feel. I may not oversee my trials, but I have control over how I deal with them, and I choose to take it slow, understanding all that is expected of me, then proceed forward in faith and with a desire to continue to be the best I can be.

On the days when I work at UsAirways, the security guard always asks me, "how are you doing today, Monya?" and my answer is always the same "better than I was yesterday" I wrestle with what has been lost in my life, it's more than just dealing with cancer with and all the side effects. I carry a crushing weight on my shoulders when I cannot achieve my goals. I can't do this alone; my soul is tired and needs rest. I've pleaded for help so many times I seriously think I don't have any tears left to cry.
I'm giving my all, but sometimes I want to avoid hearing the answers. Saying I'm deaf is an understatement. I am so vulnerable right now; I know I need to be willing to put all my trust in the Lord's hands once more. I've been down this road before; I know this feeling. Taking a step forward is challenging, and it hurts to look backward. I want peace to speak louder than my fear. I have asked again, and again, and again "what am I supposed to learn" "What do you want me to do next?" When I'm finally ready to listen, I will go and be or do what He needs me to do.

I know this fear and pain that I am feeling needs to be turned over to the Lord, but for today, just for now, I'm frozen inside. I have no regrets; I've felt this pain before, and I will not bury it; I know I have to live it, and when I'm living in those shadows, He will find me, take me by the hand, and lead me to a brighter place.

LABELS: BLESSINGS, CANCER, FAITH, HEARING, HOPE, JOURNALING, LIVE HAPPY, LIVING, LOVE, MAYO CLINIC, PAIN, PEACE, SMILING, TRIALS 

Dr. McDreamy

 

WEDNESDAY, JUNE 18, 2014

Dr. McDreamy

Been there, done that....never again...

That little black area is where the source of blood came from

So much for that shirt, bra and undergarments.

I felt every bit of that blood trickle down.

Ambulance...? REALLY...?? I wonder how much that will cost me

I decided to venture out of my hotel and see if I could find some pants. I only brought one suitcase and ran out of clothes. I thought by now I would have had surgery and been home with my family, so I didn't bring extra anything...really, you can believe it, I'm a woman and didn't pack heavy--my husband should be impressed.
I made it to a Macy's department store and was looking on the sales rack (Eric, you would be proud)
Nothing there, but while I was standing there, I heard something behind me hit the wall, I turned to look, and it was a significant splatter of blood. Immediately my ear was gushing bright red runny blood down my neck; I felt a puddle forming in my undergarments but was afraid to look--I grabbed my ear, and sure enough, it was not stopping. There was blood everywhere. The sales associate took me to the bathroom and sat me on a chair. The blood was still gushing out, saturating the wet towel, and I could feel the blood going down my throat as I put my head back.
Macy's called 911... I asked them not to because I didn't want to pay the bill for an ambulance when I could just drive to Cleveland Clinic. As soon as the EMTs saw inside my ear, they decided for me, and soon I was lifted into an ambulance. I had to tell the history of my ear issues over and over today. To top it all off, when I arrived at the Cleveland Clinic, they rolled me into the emergency area and told me to put in room 13..." No, I will not go in room 13; please don't take me in that room, I'll wait in the hallway, but do not take me in there"  wanting me to calm down the EMT asked me why I didn't want to be in that room, I said "It's not a good number, it's bad, and I need all the blessings I can get right now"  he laughed at me and rolled me into room 13...YIKES--Soon Diana and her sister, who lives here, came into my room they waited with me until a doctor could come--An ENT came, cleaned me up, and called for Dr. Haberkamp; however, he was deep into surgery and would not be able to come. We waited for one of his residents to come. Finally, he opened the curtain and said, "Hello" I couldn't resist it I replied, "Did you have to be so dang cute?"
  he laughed, and as he walked closer, I could see he had a hickey on his neck, again I couldn't resist it...."Um, you know I can see that hickey, you're not fooling anyone" he laughed and said, "I'll have to talk to my wife about that."

By this time, it had stopped bleeding...this was so scary; I had no idea an ear could bleed that much--Originally, the EMT told us he could see the blood seeping from the surgery plug Dr. Haberkamp had put it in to cover the nerve. Dr. Cutie Pie said there was a small black area in the bowl area of my ear where the blood was coming from. He said since I was seeing my surgeon tomorrow, I could leave, and Dr. Haberkamp will assess it tomorrow. I was so relieved; it was very scary to feel that amount of blood gushing from my ear and not know what to do. I just held it, like I did when I was a young child; I remember holding it when it hurt. I thanked the doctor and said have a good day "Dr. McDreamy." He was embarrassed but he smiled.

Besides a migraine, I felt fine when I left the hospital. I just wanted to go back to the hotel and sleep; I was exhausted. I did my usual going-to-bed regimen, I was finally able to lie down and once again, the blood started gushing. I remember Dr. McDreamy told me to put some Afrin on a cotton ball and pressure it if it started to bleed again. I did exactly what the doctor said, and voila' blood flow stopped. I put some bacitracin on it, covered it with a cotton ball and band-aid...and off to sleep.

I dropped my BIG girl panties today

 

WEDNESDAY, APRIL 30, 2014

I dropped my big girl panties today

I was at work, and I could feel my ear draining, trickling out and down my neck--I quickly wiped it off with a tissue, hoping no one would see it. I don't want to put a cotton ball in it because it needs air; it needs circulation; I do remember Dr. Barrs saying, "there is no circulation in your ear," which seems weird to me because most of us move our heads quite a bit during a 24-hour day. I am still trying to process all this. I am barely functioning, yet I seem to be getting things done.

For a few minutes today, I dropped my big girl panties drop. As much as I tried, I just could not wrap my head around saying "yes" to another surgery--I promised myself I was not going to do this again--I'm once again asking, "what do I need to learn?" "What is it that I am not getting?" I have come further than I ever thought I could; when Heavenly Father tells me, "You can do it," I just believe I can...and I do it.

Today, I had to walk into Us Airways once again and fill out medical leave forms--legal forms--I despise them; it's such a process, and this sounds trivial but writing out once again on a form letter--my diagnosis--my estimated days away from work brought me to tears. I love my job at UsAirways; I love my supervisor Diana; she has been patient, kind, and compassionate with me throughout my journey. When I regained my trust that I was healed and ready to move forward, I got slammed into surgery again. I have had my doubt replaced with truth, and my fears have been replaced with trust; I know the Lord takes just what he thinks I can handle, and this time, I trust he will make me wholly healed.

THE ABOVE WAS WRITTEN LAST WEEK

On Monday, I headed to Mayo Clinic again, only this time I was planning to drive myself there since Eric has a meeting on Mondays I didn't want him to miss; he takes pride in his work and loves Jeff Blandford. I waited to tell him I was having surgery until Sunday night, the night before the surgery. I told him I had it all worked out and that he could go to his meeting and come to the hospital whenever he was ready. My friend Marian Priday drove me, when we
arrived at Mayo Clinic, checked in, and waited. Finally, they called my name, I went back and got dressed, IV in, and ready with a little extra for my nerves. Marian came back and talked to me while we waited 5 hours. That is precisely why I don't like to bring people with me; I hate for them to have to wait. However, I was so grateful to have Marian there with me; she is not only a great friend, visiting teacher, and example of compassion and integrity, but she's also is pretty dang funny. She waited until they finally rolled me back to surgery, blew me a kiss, and off I went.

Thank You, Marian, for being with me

My new tattoo? No, just the magic marker from Dr. Barrs

Headed off to the OR

When I woke up in recovery, Eric was there; he said Dr. Barr's told him that because the surgery before mine took too much time, he could not do all that he had expected to do. He grafted some skin from my arm again and placed it inside my ear to help with the bleeding. He told Eric I would have another surgery, but I was not sure when. I love Dr. Barr and am grateful he has been so patient with me and my ear issues; he has not given up yet, and we will get it all taken care of eventually.

Sleepless Nights & Rainbows

 

MONDAY, APRIL 21, 2014

Sleepless Nights & Rainbows

There is not much to say; I went to Mayo Clinic today and will be back tomorrow. Today, my ear has suddenly decided to turn for the worse. Yesterday I woke up with black on my pillow; I thought it might be some dried blood, but no such luck--it was fresh and black, but it was also Easter, and I wanted to spend a wonderful day with my family.
I felt really dizzy most of the day and had problems during sacrament concentrating as my ear was pounding in my head like a heartbeat. When I bowed my head during prayer, I thought my head was going to explode, and the equilibrium was 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; few 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" I 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 his 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 met up with my dear friend Jori today; we had an hour or so to visit while we both got manicures. She is trying to move forward after the loss of her son CJ. She explained her Easter Sunday, my heart was whole; 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, listened to my doctors, taken my medicine, and tried the natural path; now it's time for me to decide if what I preach I can put into action. While at the doctor today, the cute resident who is usually there was not seeing me; I'm not sure if she is in that department anymore. Today I saw another adorable resident; he looked in my ear, didn't say much, and 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 the opposite. He brought in Kathleen, his nurse, to look, then he and she sucked out what they could. They rattled off a bunch of medical terms I'm not aware of, and 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 to put off the inevitable; I thought I would be more intelligent 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 wanted to move out of the shadows and into the sun, taking baby steps and reconnecting with friends. I'm finally comfortable where I am in my life; an occasional visit to Mayo Clinic would be OK, but these weekly visits annoy me. Dr. Northfelt can't tell me I'm cancer free, but I've learned to live with that, cope with it, and trust in Him. Today I felt more alone than I have in an exceptionally long time. I had an appointment after Mayo Clinic; when I left, I pulled over my car and cried a river, then said a prayer, listened for an answer--NOTHING! When searching 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, I didn't feel it.

I'm scared; I know he knows my strength; 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 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. I often want to go back to the days of no cell phones. I wish I could find the happiness I'm looking for. 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. 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 leave it in the Lord's hands."  I guess taking the rain with the sunshine is the only way I will get to see the rainbows.

Never Give Up

 

MONDAY, APRIL 14, 2014

Never Give Up

I have to remind myself of this daily

Oh, how many times I've heard those words...."Never give up," but never have those words resonated 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 December10, 2013 I went under the knife again; my time has been occupied with Mayo Clinic for over 4 years. I have lovely family and friends who have supported, prayed, fasted, and served me; most do it with no recognition, only pure intent of a good heart.

With so much time dedicated to Mayo Clinic, doctors, MRI, CAT scans, Bone scans, blood tests, etc., the list goes on and on. I have done everything my doctors have told me to do, and I have no regrets. My doctors have become my best friends, and Mayo Clinic is the 2nd home I never saw coming.

I love each and every one of the doctors on my team...but I need a life...outside of Mayo Clinic. I decided NO MORE SURGERY, no more putting bandaids on things. I missed a few appointments the last couple of weeks, and honestly, I didn't care a bit. I'm tired; I'm simply exhausted.

In January, I was approached by a dear friend with whom I have not had enough time, 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 other old-time friends were working a booth for an 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 listened 1/2 way there and 1/2 way in another world--I saw all of these people, some of my close friends who I had 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 told 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 Shelli my credit card and signed up for a new life with Nerium. I bought my ticket to a national conference in St. Louis and went home.

I had no idea what I'd just done--either a Tender Mercy--or an impulsive buy. I'm not always good at making the best choices for myself. Mayo Clinic keeps calling, and I do not want to talk to anyone there.

I have continued to say, "I cannot handle any more surgery." But is that best for me or my family in the long run? I've met with Shelli weekly, and my circle of friends has grown. 

In St. Louis, 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 inevitably 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. At the same time, I spoke to God--asking him, no begging him, first 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 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 I just needed that moment to 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 deep pain, physically and spiritually. Mentally--I've been forced to face a villain, and there's nothing I can do but just get it out once in a while--I know this pain is not going away anytime soon.

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 this is the way for me to get away from my cancer world, even if it's for a weekend in St. Louis.

So tomorrow, I will again be headed to Mayo Clinic--being asked again about having another surgery--at this point tonight, I am not sure what I will say. I will not commit to anything I will listen with my heart.

• l

What a day...

 

SATURDAY, MARCH 8, 2014(written)

What a day...

Friday, March 6, 2014

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

Love my Doctors-

 Dr. Northfelt hugged me, and we entered a room filled with physicians. They introduced him, and he introduced me. As he began to tell the overfilled room of doctors about my diagnosis, I was not prepared to hear what he was saying. I had an out-of-body moment as I listened to him announce my stage 3 diagnosis; I could feel an anxiety attack coming on, and I could hear my heart beating, hoping no one else could hear it through my microphone. I was listening to him talk about me, my life, my breasts, my everything, well, at least everything medical that has happened over the last 4 years. I felt like I was in a tunnel. Every word he said penetrated my mind; oh, my goodness, this happened to me? It was difficult for me to express the rawness I felt hearing him speak; it was like I wasn't in the room. I watched as physicians quickly wrote notes; I thought, "what the heck are they writing? do they not understand, do they not see me, am I just a number to them, or a statistic?" "Do they not know I have a family? When I leave here today, my name is Monya; I have a husband named Eric, children with names, grandchildren, friends...I'm not a number but a person with real feelings."
Now it was my turn, Dr. Northfelt began asking me questions, and I was to answer them openly and honestly in a room full of strangers. There were two of us, Linda and I. Her diagnosis was stage 1, and for every question, Dr. Northfelt asked, she and I had complete opposite answers.
We talked about neuropathy, bone pain, body image, and sex. Then it was question and answer time; as they collected the questions, now I knew what they were all writing. One of the final questions I was asked was, "how has your quality of life changed?" This is my answer to that question, with a quiver on my lips and a tear in my eye. 

"Pre diagnosis, I thought I was happy, I was living the dream, four children, blessed with a husband who worked hard so I could stay home with the children, I had a nice home, car, able to exercise every day, I seriously thought I was happy. Now today, as I sit here with all of you, I can tell you without hesitation money, cars, and big homes do not bring happiness; through my journey, I have learned who I am, how strong I am, and who is important to me, what is important to me. I can honestly say I'm the happiest I have ever been in my life right now. I've learned that all those distractions I thought were important were mere objects detouring me from real happiness. All that really matters to me is my family and my doctors. I love them more deeply and purely than I ever thought I could; life is a precious gift that so many take for granted, Dr. Northfelt promised me he would be with me through every step of my journey, and I believe him." 

With that being said, the lecture ended, and everyone stood and clapped. That surprised me; is this normal? Do they stand and clap at these things? Several doctors came up to ask me questions; one of them walked up to me and asked me if I had ever tried any natural paths. My first reaction was, "Who is this kid?" Seriously he looked like he was 16 years old, I'm assuming just out of school and starting his practice eager to learn.

I'm not sure I said anything today to help anyone in that room. However, it did help me listen to my diagnosis, notes from my surgeon, and details I never wanted to hear.

Opened and shared; he can't take it back; I heard it all. This is precisely why when Dr. Northfelt initially asked me if I wanted to know statistics, I said "NO" I didn't want to know, not because I didn't care about other people. Still, I needed to focus on myself and what I could do to kill the villain in ME; I promised myself a long time ago that I would have no regrets and do precisely what I was told to do. I feel good about that; I'm firm in my knowledge of what I needed to know and what I didn't want to know--but now, I know, now I've heard it, scary? Not really, just an uneasy feeling hearing it all.

Dr. Northfelt walked me out to my car and hugged me; I told him how much I loved and appreciated all he had done for me. He thanked me for helping his lecture not be so boring. As I drove off, I couldn't help but be emotional; a few tears streamed down my cheek and onto my shirt, I looked up, and without any rain in sight, I saw a beautiful rainbow, sweet, tender mercy from the Lord, that moment gave me some peace, and I smiled. He really does know what I need and when I need it. Little tender mercies are recognized. Thank you for lifting me to higher ground today.