Dr. Sal Lettieri Eye Surgery

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

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

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

The truth stings

Hip and back pain, back in Dr. Freeman's pain clinic today at Mayo.  I love my doctors, he is a good man, they all are.  Walking into the hospital gave me uncomfortable feelings of remembrance, being in pain for me has become an issue  I won't address unless it get to at least on an 8 on a scale from 0-10.  The medicines for pain I despise.  When I walked into the hospital today I immediately looked to my left, this is where I watched a woman die while the paramedics tried to save her, and I was jealous, I wished it had been me.  I'm not afraid to die, but enjoy life right now too.

Mayo Clinic "the place"

The nurse came in with  Dr. Freeman  asks my name, birth date and asks "what are we doing for you today?" ha, umm for me or to me? without hesitation I reply "hurting me to take away my pain" how weird is that statement?  They both, not knowing how to respond say "where are we going to hurt you today" laughter "in my hip and lower back" He gives me trigger spot shots, and when he does he jiggles the needle around to make sure he gets the entire area around where the initial pain is.  Every time he does that I want to come off the table, he always says "almost done, I'm sorry it hurts"  I have not seem him since my surgery in at Mayo Clinic in the Spring, we were able to have a good private conversation about how I'm really doing.  That one is so hard to talk about, I'm not sure how I am doing, in comparison to what?

Recovery, drinking my daily routine

I have been staying really busy, working at US Airways, I have the best management and supervisor I could ask for, they really care.  Also, working on being Happy, trying to deal privately with, if my face has to stay the way it is right now, am I going to be OK with that? I don't expect anyone to understand how I feel, but at times I am lonely in THAT world. I have researched partial facial paralysis, gone to the library, online and trying to reach out to anyone who has suffered or is dealing now with this--NOTHING--I guess I understand a little more about what Dr. Barr's was talking about when he said this is rare for a nerve to just die, with no apparent reason.  This is not like having a stroke or Bell's Palsy where the nerve is damaged,  and WILL eventually snap back, this is a dead nerve, which means it will not live again, or regenerate.

This is what a dead nerve looks like--and it's mine.

Going to Cleveland Clinic to see Dr. Gastman was to take a live nerve from my ankle and replace the dead nerve in my head with a good nerve, hoping it will grow together with the nerves on either side.  IF this works,  we will not see any results for a year, and I will maybe get 30% of facial movement back.  If it does not work, they want to cut along my hairline pull my face back and take nerve from my left side of my head and connect it with the one on the right, then wait another year.   I'm not sure I want to go through that again.  Going back and forth to Cleveland Clinic is difficult for me, not getting results or answers is frustrating, wanting to say "WHY" is realistic on some day's.

Getting to hear for the 1st time in 48 years was fantastic, I heard things I'd never heard before, sounds most people I know take for granted.  That first night coming home was one of the most spiritual experiences I've ever had, without a doubt the Lord was smiling down on me along with Colby.  What I wasn't prepared for was going to work the next day, ready to share my new exciting news was quickly turned to sadness.  Actually hearing what people say about me, it hurt, none of them were saying it to hurt me in fact none of them know I could hear it,  and they all were saying it out of love for me--still the sting of truth hurts. Going to the store, watching people quickly look away when we make eye contact I've been able to get used to, but now hearing opinions I am the one looking down and away before eye contact is made. I thought I was going to make new connections and share in the beauty of small sounds, be able to give the gift of not taking for granted, the sound of a pen writing on a piece of paper, or the clicking of the keys on the keyboard as we making reservations, the fact that I could for the first time be able to turn the phone volume down. Instead what I heard was "I feel so sorry for her" "She is so strong" "Have you ever read her blog?" "I don' think her face is ever going to be the same"  "She used to have such a beautiful smile" tears ran down my cheeks as I sat and heard these words coming from I'm not sure who, as I am still trying to distinguish where sounds are coming from.  We have cubicles where we sit,  I quickly wiped my tears so no one could see, and took my BAJA off.  I haven't worn it since that day to work.

So proud of Mayo Clinic, this Cancer Center has been in the
works for year's, it's getting done, they will have a proton
radiation beam, the only one in the Western part of the
nation.  Proton beams are used to radiate certain cancer's and
can pinpoint to  99.9% . 

I am the one who get's to decide what my destiny is, what my life will be and who I decide to share my light with.  I love my co workers, I love my family and friends, but I need to be OK with 'me'.
I will decide where I end up, I'm doing what I can to figure all that out, and until I do I can't wear the BAJA.  I pick and choose,  and I'm taking it slow, because sitting in this moment right now, I'm feeling things I've never felt before.  My heart has never beat so hard in my chest than it has in the times when I've been wearing the BAJA.  I feel blessed to know, the people around me are sincerely my friends, they are kind and loving, at least nothing bad was said--just the truth--the truth I was not prepared to hear.  Reality is, I need to work on me, on my confidence, get rid of the negative and concentrate on the positive.  There's a fire in me that I can never deny, I know He lives and He loves me.  It is my faith and my hope over the years that has given me such peace, given me strength to endure and enjoy the sweetness of life.  However, I've tasted the truth and my heart will never be the same. That is not necessarily a bad thing, maybe I needed a taste of reality.  It's just going to take some time to process what it is He wants me to learn.

Off of my balcony in my bedroom, the moon
is beautiful tonight, this picture does
not do justice.  It is HUGE, YELLOW and
GOEGEOUS

I will wear the BAJA on the Sunday before Thanksgiving, to hear Stephen Phelps and the choir sing Come thou Font of every Blessing.  I have so much to be grateful and have been blessed with a good life---music touches my soul and helps me to heal.  It's just a longer process this time.

Cleveland Clinic Day 1

This is the picture Dr. Barr's took during surgery--the greyish is the graft he did and it died within 5 days.

Today I spent  4 hours with a specialized doctor at Cleveland Clinic.  I was extremely impressed with him, his bedside manner and his credentials--however, he had not received any of my reports from the Mayo Clinic, I got them and actually faxed them and email them ..... they had nothing, none of my films, path reports, lab report, OR notes--we spent, luckily I had copies of it all with me but it really was frustrating to have to tell the story all over again and again--The doctor's PA came in to discuss why I was there--she looked at me and didn't seem to have much compassionate--for some reason I was so frustrated trying to get all my paper work in order--she said the receptionist who usually brings these referral patients paperwork to them to study before the patient gets there was out of the office, so they had not read anything or seen any pictures from my surgery---I told Diana, I was worried this would happen.

I sat telling my story--long story of my ear--from the blow to the ear when I was 3, to the current status. I felt like she was looking at me, but not listening--it felt like she had no connection  with what I was telling her.  She left the room to talk to the doctor, soon he came in and again I had to tell the story as he typed it into his computer.  He seemed to be concerned for me and could obviously see my face was effected.  He did all the routine check points to see the damage of the nerve.  Then he explained that the ear needs to have a complete debridement of the ear cavity and canal.  He said he could not and would not touch any facial nerve surgery until the ear is clear of all infection, and is healed.  He explained, and I have agreed with this all along, so has Eric.....no plastics doctor should be going in during ENT surgery to do repair of the facial nerves.  When he read the reports from Mayo, he was very complimentary of all the doctors I have seen, he mentioned Dr. Kreymerman and Heather and said he likes both of them very much, Dr. Kreymerman trained here at the Cleveland Clinic.  It was nice to have a doctor with a connection to some of my doctors at Mayo, for me it's reassuring.  He agrees with Dr. Barr's about the window of opportunity to get any nerve damage a possibility of repairing.  however, does not necessarily agree with taking the mussel from my tongue. I have until April of 2014 to have all my healing done from my ear before he can touch anything else.  He explained how the process works.  Basically he made an appointment for me on Thursday with and ENT here in Cleveland, then Neurology needs to be involved because of the skull involvement,  We asked to see a doctor I was told about that is an ENT--he left the room to get those organized, and I sat in the window seal of his office looking out into the beautiful green trees, and grassy area, it was  surreal  to me.  It takes a lot of energy to keep my mind focused on the HAPPINESS I have in my life, I have so much to be grateful for, this place feels right, I know I should be here, I know one of these doctors can help, my eyes start to bubble up with tears, as they trickle down my cheeks finally landing on my arm I was a mess, I said to myself "how did I get here,? why am I here?" (not in Cleveland, but in my life) The doctor came in and we chatted about my favorite doctor ever Doctor,  Peter Kreymerman, and his PA Heather Lucas--he said PK is a great man (I've said that for 5 years now, and Heather he said is sweet, compassionate and a great resource for me. He then did a quick assessment of my ear, the routine facial tests, like raise our eyebrow, smile etc.....he mumbled to himself, "yeah there is nothing animated about this right side."  He then explained he cannot do what I need done on my facial paralysis until I get the ear healed, also that I will have several surgeries to fix my face. I cried, I never cry in front of my doctors, I suck it up and do what they say to do.  This time, I'm exhausted and starting feel the burden of this all, my shoulders are heavy with burden. I'm glad Diana was there, with her nursing background she got all the answers to questions I would of never known to ask--one of them is that after the debris is cleaned out and healed, instead of taking a mussel  from my tongue (which in his words is old school and does not bring animation back into the face, he takes  the mussel from my inner thigh) or another procedure could be to take a nerve from the left side of my face and pull it over the right side, and hope for it to connect.

Within a few minutes his PA came back in the room and told me she was able to make an appointment with this doctor who specializes in my issues, she said she would try to get me squeezed in tomorrow, but for sure I have an appointment with him on Thursday, neurology will also be on my itinerary.  I began to cry again, Diana teared up and the PA had nothing to say but she too teared up. I left there feeling like this was a waste of my time, Diana feels very hopeful and even said the differences between what I heard at Mayo "your right side of your face will never look the same as the left, and you and Eric need to get used to it) Is that this doctor today gave me some HOPE.  I'm exhausted and need to get a good night sleep, my mind has continually been on this ear problem that I have not had anytime to think of anything else. Still praying for a miracle.

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.

What a day....

Friday March 6th, 2014

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

Love my Doctors-

 Dr. Northfelt hugged me and into a room filled with physicians we went, they introduced him, and he introduced me.  As he began to tell the over filled room of doctors about my diagnosis, I was not prepared to hear what he was saying.  I had an out of body moment as I listened to him announce my stage 3 diagnosis, I could feel an anxiety attack coming on, I could hear my heart beating and hoping no one else could hear it through my microphone.  I was listening to him talk about me, about my life, my breasts, my everything, well at least everything medical that has happened over the last 4 years.  I felt like I was in a tunnel, every word of what he said penetrated deeper into my mind, oh my goodness this happened to me?  It's difficult for me to express the rawness I felt hearing him speak, it was like I wasn't in the room.  I watched as physicians were quickly writing down notes, I thought to myself "what the heck are they writing? do they not understand, do they not see me, am I just a number to them, or a statistic?" "do they not know I have a family? that when I leave here today my name is Monya, I have a husband named Eric, children with names, grandchildren, friends....I'm not a number I'm a person with real feelings"
Now it was my turn, Dr. Northfelt began asking me questions and I was to answer them openly and honestly to a room full of strangers. There were two of us, Linda and I.  Her diagnosis was stage 1, and every question Dr. Northfelt asked she and I had complete opposite answers.
We talked about neuropathy, bone pain, body image and sex.  Then it was question and answer time, as they collected the questions, now I knew what they were all writing.  One of the final questions I was asked was "how has your quality of life changed?" this is my answer to that question with a quiver on my lips and a tear in my eye.  "Pre diagnosis, I thought I was happy, I was living the dream, 4 children, blessed with a husband who worked hard so I could stay home with the children, I had a nice home, car, able to exercise everyday, I seriously thought I was happy. Now today as I sit here with all of you I can tell you without hesitation, money, cars, big homes do not bring happiness, through my journey I have learned who I am, how strong I am, who is important to me, what is important to me, and I can honestly say  I'm the happiest I have ever been in my life right now, I've learned that all of those distractions I thought were so important were mere objects detouring me from the real happiness, all that really matters to me is my family and my doctors, I love them more deeply and purely than I ever thought I could, life is a precious gift that so many take for granted,  Dr. Northfelt promised me he would be with me through every step of my journey, and I believe him" with that being said the lecture came to an end, everyone stood and clapped, that surprised me, is this normal, do they stand and clap at these things?  Several doctors came up to ask me questions, one of them walked up to me and asked me if I have ever tried any natural paths, my first reaction was, "who is this kid?" Seriously he looked like he was 16 years old, I'm assuming just out of school and starting his practice eager to learn.
I'm not sure I said anything  today to help anyone  in that room, however, it did help me listening to my diagnosis, notes from my surgeon and details that I never wanted to hear were exposed. opened up and shared, he can't take it back,  I heard it all.  This is exactly why when Dr. Northfelt asked me in the very beginning if I wanted to know statistics I said "NO" I didn't want to know not because I didn't care about other people, but I needed to focus on myself, what I could do to kill the villain in ME, I promised myself along time ago I would have no regrets, I would do exactly what I was told to do and I have, I feel good about that, I'm firm in my knowledge of what I needed to know, and what I didn't want to know--but now, now I know, now I've heard it, scary? Not really, just an uneasy feeling hearing it all.
Dr. Northfelt walked me out to my car, gave me a hug, I told him how much I love and appreciate all he has done for me.  He thanked me for helping his lecture not be so boring,  as I drove off I couldn't help but be emotional, a few tears streamed down my cheek and onto my shirt, I looked up and without any rain in sight, I saw a beautiful rainbow, a sweet tender mercy from the Lord, that moment gave me some peace and I smiled.  HE really does know what I need, and when I need it.  Little tender mercies are recognized, thank you for lifting me to a higher ground today.

"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

Results from Cultures

Today is Friday January 17th--

As I said before, during surgery they were able to take the tumor out in tact--no problems YAY--that is good news.  However, yesterday as I met with Dr. Barr's I was more concerned about the lack of hearing in my good ear than the right ear--he did examine the right ear and  Eric and I were able to see it on the screen as he vacuumed it out.  He said the healing looks as expected and to cut back on some of the cleaning regimen and antibiotics--doing the antibiotic too often can cause fungus which is not an easy thing to rid your body from. I was surprised how infected it still looked.

They found several strands of bacteria and were sent to the infectious disease department at Mayo.

PEPTOSTREPTOCOCCUS :  infections can occur in all body sites, including the CNS, head, neck, chest, abdomen, pelvis, skin, bone, joint, and soft tissues. Inadequate therapy against these anaerobic bacteria may lead to clinical failures. Because of their fastidiousness, peptostreptococci are difficult to isolate and are often overlooked. Isolating them requires appropriate methods of specimen collection, transportation, and cultivation. Their slow growth and increasing resistance to antimicrobials, in addition to the polymicrobial nature of the infection, complicate treatment.

ASACCHAROLYTICUS:

family of bacteria living usually in the alimentary canal or on mucous surfaces of warm-blooded animals; sometimes associated with acute infective processes

VEILLONELLA: it has been isolated in pure culture from various sites and implicated as a pathogen in the sinuses, lungs, liver, central nervous system, heart, and bone. Bactere- mia in the absence of an underlying source, however, is ex- tremely rare; to our knowledge.

I will be closely monitored by Mayo, but for now it looks like everything else is healing as expected.  I told him I was more worried about the loss of hearing in the left ear, I even got a little teary eyed trying to explain how it feels.  I am able to speak one on one with someone by reading lips and hearing slightly what is being said, but in groups of people I do not do not do well, it's hard for me to understand where the sounds are coming from.  His RN Kathleen, explained to me that this is totally normal for people going through these symptoms.

I then turned and asked Dr. Barr's why or where the fluid is coming from in my left ear his response with a smile on his face was " You as a person, we love and you are great, but you have terrible ears, this is just something that is part of your anatomy and we will deal with it as we go"  I have to ask people to speak directly at my face and raise their voice.  We are also praying this is a  temporary loss of hearing, if not he will poke a hole in my left ear to release the fluid, but he prefers to wait a couple of weeks to see if it clears out before doing this, because it is my only ear that I have hearing from it is a risk to make a hole in the eardrum.

I asked him about the tubes he had mentioned before and he said no to the tubes--no explanation.  So basically for now, I will be monitored closely go to my appointments and be rechecked and rechecked. If I would like the hole put in the eardrum to release the fluid now I can, he said it is my option, but I decided to go with his suggestion and wait it out.
As far as the right ear recovery Dr. Barr's said it really will take 3-4 months to fully recover.   So to me this sounds like good news. The only problem is, I would like to go back to work on schedule February 4th but since my job relys completely on the ability to hear, Dr. Barr's will either extend my medical leave or drain the left ear with a hole being placed in the eardrum.

The BAHA looks good, and I should be able to get the BAHA in March or April.

Silence is Golden

Today is Tuesday January 7th, 2013
Have you ever heard "Silence is Golden?" I remember being a young mom, a sister gave a lesson in Relief Society and she used this phrase, I do not remember to what context she was talking about, all I remember was thinking, "How would it be to have complete silence, my house has 3 young children running every which way, noise everywhere"

Right now that phrase means something completely different to me.  In joking my family has through the years made light of me not be able to hear out of one ear, not in a mean way or anything, but an example would be, at night when I go to bed I put a earplug in one ear, so I can have complete silence when I sleep.  My family has always thought it was funny to walk in when they knew I had he ear plug in and start signing to me, or talk really quiet so I have to pull the earplug out to hear what they were saying, for a long time I didn't realize they were playing around with me.  I just pulled the ear plug out and without fail, they would say "never mind" and I'd put the plug back in, again they begin to talk, I pull the plug out and again "never mind"  it didn't take long for me to catch on they were all in on this joke--and I have always been able to laugh with them, after all it's true I'm completely deaf in one ear.
I have, for years told my family I hope I never lose hearing in my left ear, they'll have a hay day with that.

I am hoping this loss of hearing in my left ear is temporary.  Right now I have 25% hearing in only one ear.  It is the most frustrating thing I think I've faced so far.  When I think of not being able to hear the beautiful music of the church that I listen to daily and love so much it makes me anxious and scared.  Today I went to pick up a prescription at Walgreens and I could not hear what the lady was saying through the speaker--when I was speaking to my sister on the phone through my car audio I had it turned up to the maximum of 30 and I could barely hear her.  This is a reality for me, when I am one on  one with someone or in a small area I do ok, but when I am in a restaurant or a place with a lot of sound going on, it is difficult to balance out where the sound is coming from.  I get anxiety and a fear that is hard to explain, right now I could careless about my right ear, I just don't want to lose the hearing in my left ear--oh please don't let that happen--but if for some reason it is thy will I can survive right?  It'll just take some getting used to.  I have to remember the other side of the mountain--do what I can and not worry about what I can't.

Haleigh-Washing the blood out of my hair

On my way home from the Mayo Clinic,  I was thinking about the day after I came home from the Hospital.  I called Haleigh and asked her if she would mind coming over to my house and washing my hair for me, she said "I'd love to do that for you mom" as she washed the blood out of my hair in the kitchen sink I could smell the blood.  Haleigh was careful not to get water in my ear, it's a difficult task. I reached up to help move my hair over and out of the way of the water and a chunk of hair fell into my fingers.  Tears immediately filled my eyes,  I wrapped my hair in a towel went upstairs and tried to comb through it, clumps were falling out.  Two days later still a huge chunk, I asked about it and I was told because of the amount of anesthesia I was given during such a long surgery it sometimes effects patients by their hair falling out.

 I have thought about Haleigh washing my hair that day so many times --it was such a small act of service, and knowing my daughter she has probably not thought about it since.  Sometimes those small acts of kindness are the ones that mean the most to me, and probably to others, those are times when I think of the Savior teaching us.

Matthew 22:36-39 A man asked Jesus, "Which is the great commandment in the law?" Jesus replied:  Thou shalt love the Lord thy God with all thy heart, and with all thy soul, and with all thy mind.  And the second is like unto it, Thou Shalt love they neighbor as thyself"  Charity and service are the pure love of Christ, when we are able to serve others even in little ways, it shows our desire to be more like HIM.  Sometimes those acts of service are hard and can stretch us to places where we may not feel comfortable.  But I believe in all of us there is Charity and it is a gift from God. He has given it to us and expects us to act upon it. When we are able to do it with a willing heart it shows we are trying to be more like HIM and have true Christlike Attributes.

I don't think it was necessarily an easy task for Haleigh to come to my home and clean blood out of her mothers hair, but I was grateful she did it.  Showing these Christlike Attributes helps us to gain potential to become more like HIM. When we do it with a pure heart, avoiding negative feelings, or judgement and criticism, it is easier to understand what another persons point of view is, and gives an opportunity to strengthen our faith and develop a life of service and charity.

Could of been worse

Today is Friday January 3rd

Yesterday, I had an appointment with my surgeon.  I stayed off of any pain medicine except for Advil so that I could drive myself to the Mayo Clinic.

black all gone--with my hair down it covers the bald spot
you cannot even tell except that my hair is a bit thinner
I feel more comfortable having the ear covered so
I usually wear a beanie.

I checked in on time 2:50 pm for a 3:00 pm appointment, I did not wait long at all I was in the doctors office by 3:00, and seeing the resident by 3:05.  This was a resident I had never seen before, in fact none of the residents in this department have made a 2nd appearance.  She did her usual questions, how are you feeling, how is your pain, anything new we need to know about?  Before I answered her questions I asked her if I would be able to see Dr. Barr's, she said he would be in shortly.  She then proceeded to poke around in my ear, she then said "I'll be right back, I need to get Dr. Barr's"  soon he came in, took a quick look and asked the resident to leave and start on the next patient, before she left the room he wanted to show her somethings in my ear, he told her the black area in my ear was dead skin, and in his 31 years of practicing he has never seen skin die like that before surgery, he excused her and I didn't see her again.

He took a scalpel cut off all the black dead skin,  except for a small area he could not get to without hurting me, so I think he will deaden the area around it next time and take it out.  Cutting out that dead skin did not hurt at all, it was weird.  Then he layed me back, told me to hold tight and that things were going to get dizzy.  Immediately when he began to vacuum my inner ear, I couldn't keep my eyes open, I was so dizzy.  He asked me to keep my eyes closed and it would help.  It did help, but when he was done and I opened my eyes it was really hard to keep them open and took several minutes to regain some type of normal visual. The vacuuming is extremely painful, especially since all I had was Advil. Dr. Barr's gave me a new regimen  for cleaning my ear to see if it will help the healing move along faster--swish out the big hole with vinegar and water--OUCH--was my 1st thought, he then looked at me and said "this will sting a little, make sure the water is at room temperature" also that I need to keep germs at a minimum, stay out of public places as much as possible or wear a mask--I seriously cannot stand wearing that mask.

Once he was done, I asked him to look in my left ear, because I have been having a hard time hearing.  He seemed surprised but did the usual exam of the ear and showed me on the movie screen there is fluid behind the eardrum. I asked him how to fix it, because I am so worried about losing my hearing.  He said he will see me on a more regular basis now, if the liquid does not go away on its own he will 1st put tubes in that ear to try to drain it, if that does not work then, well then I guess it's time for me to start learning sign language.

1st he took the cap off of the implant, so it can heal. We will not be able to connect the BAHA until March or April depending on the healing.  Now I have a screw that is visual going through the bone in the back of my head behind my right ear. This BAHA is healing very well and as expected--good news.

Then he helped me out of the chair and assisted me to a place to sit down so we could talk.  What he told me is this--he cannot get the ear cleaned out for a long enough period of time without it filling up with blood, so he cannot tell me if the healing is happening or not--he said it is unusual--I asked him if the grafting took--he said, "again I cannot get a clear view of the grafting or the area I need to in order to see if it is healing correctly, normally I would not be seeing you again until March or April to finish up with your implant, but I feel it necessary for me to see you every week until I can see an improvement"  I asked him if he  can give me a little more, some HOPE that this is  just taking longer to heal than usual.  He then looked at me and said "I have to be honest with you I have never seen anything like this before, so I don't feel comfortable giving a prognosis quite yet" I waited for about an hour until the dizziness went away and left his office.

Dave Cluff

My visiting teacher Marion Priday sent me a text last week asking me if I would like to have a song that Dave Cluff sang in sacrament sung in our home.  Oh, how I love music and was so happy when Dave and Kathi moved back into our ward, he has a beautiful voice.  I asked Marian if we cold do it on a different day, as I was really not feeling good that day.  So Dave and Kathi along with Kathi's sister came over to our home last Sunday and he sang "O Holy Night" It was beautiful, I was touched by the spirit through Dave, and his flawless beautiful voice.   These are the type of people I love to surround myself with, uplifting, faithful, unconditionally loving people.  Eric and I talked about it after they left and we both  agreed it was a selfless move for Dave to leave his family and home and give such a great gift to our family, and leave us with the feeling that all is well.

Before he began to sing he started by asking if we remember Wally and Brian Slade singing this in our Church meetings years ago, we agreed that yes we had and loved it.  Dave then said "this will not be
as good as them, and he laughed: I've always told Debbie and Wally if their children lived in my home I would make them sing for their dinner--but Dave was oh so delicate and beautiful as he sang and I loved every second of it--thank you to the best visiting teachers for suggesting this.

I want to apologize if i offended someone in my last post, I know I did by the comment that was left, so I have decided it is best to make my comments private.  I read it over and over again and I am not sure if the person thought what I was saying was not true, or if they were upset at what the doctor had said, but with that being said you have to remember this doctor was not acting as my doctor I went to him as a friend and he gave me his answer as a friend--I removed his comment and yours.

Thank You to all who have supported me and given me unconditional love and support, and to those who have anonymously left me comments that help me remember my room for error at times.

Monya

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.  

Next Up Surgery Dec 10th

I have spent several days at Mayo Clinic, the past few months.  It is time to remove the cancer in my ear canal.  I was sitting at work with my supervisor one day a couple of weeks ago and she interrupted me to tell me that blood was dripping from my ear unto my shirt. I quickly grabbed a tissue and covered my ear. Now that blood is combined with blackness, I have to cover it constantly with tissue or it will drip out--when the tissue is not in my ear it feels as though the wind is blowing from one ear out the other.  Not to make light of this, but maybe there really is nothing in between my ears--ha ha Dr Barr's will take my ear off, lay it to the side of my head where he can see more clearly what is happening down the ear canal--my ear has had so many surgeries on it as a child, the ear canal is smaller than an infants, so it makes it hard for him to see how bad or good it really is in there.

  As a young child I was standing outside of our home throwing a football back and forth to the neighbor kids across the street, someone had rolled over the ball with their car and the tube inside the football was bursting through the seems,  but it didn't keep us from throwing the ball we loved those simple pleasures.  As I caught the ball it blew up in my hands, I immediately grabbed my ear, it began to bleed and my mother rushed me to the hospital, once again for another surgery, the eardrum had exploded. This time it was not able to be repaired enough for me to ever be allowed to be immersed in water--no swimming, no baptism--those things were not a big part of my worries at that time I was so little I didn't think of it as a burden.  I do remember being in that hospital more times than I ever wanted to be--same room--same nurses--same surgeries, seemingly to get progressively worse after each surgery.  Dr Brian Borland was my ENT, I loved him because he loved my grandmother who was an RN at the hospital where he worked and he always told me incredible stories about her--she passed away having melanoma and he was always impressed with her ability to live as long as she did--she was a fighter.

I never swam, I was baptized at the age of 10 with my ear covered in complete packing, taped down and covered with plastic--with all of that said and done it never took away from the spirit I felt that day.

  At age 29 I began to have symptoms of my equal Librium being off, and I was falling to the ground, actually Eric and I would laugh about it, being young and newly married we had no idea what was going on--I went to see Dr.Borland he took one look in my ear and sent me to another ENT specialist, I'm assuming much like Dr. Barr's at Mayo Clinic, he specializes in the inner ear only, his official title is Department of Otolaryngology, Ontology and Neurology department.  He explained after he takes the ear off and is able to see the tumor he cannot give me a clear indication as to the severeness of it, but is 70% sure it is in tact and will be able to be taken out.  Then he will graft skin from my back or another part of my body to cover the hole in my ear drum,  he will make a small hole in the eardrum to allow relief of pressure.  We want to attach the Bone Anchored Hearing Aid --the proper name is the Cochlear Baja device for people with SSD, single sided deafness. Basically I will never be able to have hearing restored in my right ear, but with this device it will take the sound from the bone and nerves on my right ear to the bone and nerves on my left ear to help me hear better with the good ear --getting older it is getting even harder to hear, and this will give me a better quality of life.  The day before  my mother died, I was told because of the Obama Care,  what was approved last year is now not covered anymore--It was a let down but I have lived without hearing in that ear for so long, I can do it and continue to read lips, until it is approved.

 This recovery will be long and hard.  I'm not sure what he means by that, chemo and radiation were no walk in the park, and I've had plenty of ear surgeries.  Today I tried to get a clear picture of what my ear looks like....it's hard to see in there, but I forgot to put the tissue in today when Kayla came over and she was pretty sickened by what it looks like, so I'd better keep it covered and cleared from getting infection.  You may be wondering why we are waiting until the 10th of December to have the surgery done, well that was my decision, I need to see one of my oncologists on December 3rd which was the earliest Dr. Barr's could get me in, so I opted for my pre-op appointment on December 3rd after my Dr. Magtibay appointment, then surgery on the 10th.  Yesterday, Eric and I went to the Audiology department at the Mayo Clinic on Shea to have another hearing test done for the insurance company, I'm pretty sure the audiologist was grossed out when she saw the cotton ball soaked in black cancerous goop, and blood, she asked "Has Dr. Barr's seen you recently? because that does not look good" After explaining to her I saw him a couple of weeks ago, and now he is on vacation I do not want any other doctor doing this surgery, she proceeded with the hearing test, only on the left side this time since they now are convinced I have 0% hearing in the right ear--left ear hearing is still there same as last year--just a tad bit worse--nothing to be alarmed about.  Hopefully the insurance will listen to my plea for an exception to be made, so I do not have to go through yet another ear surgery.

Carcinoma in the ear canal (I wish mine looked this good)

this is a smaller version on the hole in my eardrum--mine is now completely blown out.

On December 10th, I will once again go into a surgery room at Mayo Clinic, praying to the Lord to help me fight this thing. Someone asked me today, "are you tired of this?" I said "tired of what? this is just life, and happens to be mine" but honestly it is getting harder and harder for me to remain optimistic, especially since its 3:00 am and I need to go to bed.  Today, during Sacrament I was in tremendous pain, but wanted to go and take the sacrament and then listen to the testimonies born hoping I can feel the spirit and be lifted again to a higher level.  I also had forgotten take my aspirin m the past couple days and the slurring started this morning.  I hesitated walking up to the pulpit but the spirit led me by some of things Norma Hastings said, and I knew the people in our ward would understand.  I have no idea what I said, and am hoping what was said was understood because the words were coming from my heart.   I can't explain how hard it is to get sentences to come out the way you want them to but they don't.  I honestly, felt the spirit today Heaven's angels were helping me.  After Sacrament, a dear friend of mine told me a story, an experience she had during my mothers funeral, I don't feel comfortable sharing her experience, but that experience was reconfirmed to her while at the Temple last week,  It was exactly what I need to hear--so my sweet friend if you are reading this I love you, and I thank you for sharing such a intimate experience you had with the spirit.  I love  you.

The carcinoma is my ear is now a little out of control I cannot go for over an hour without the black soaking through the cotton balls--It's time for the surgery.  Tuesday I will see my oncologist, Thursday I will have my preop, and the following Tuesday I will have surgery.

Empty Nose Syndrome and Doctor Freeman Mayo Clinic

September 24, 2013
A year ago I was hit with a hammer in the head (not literally) doctors found things in my body, too many things and I was not ready to deal with them.  I had a surgery on my nose to fix the broken. I was told the septum was broken caused from septum Chemo. However I have issued with my right nostril since I broke my nose at ate fourteen. I think if anything all chemo did was finally crush it in.  I said no to a biopsy, no regrets. I said no to the ear surgery with the BAJA implant, no regrets.  I  asked my family to respectfully give me the time I needed. Well it seems the time has come.

I was encouraged when I saw Dr. Barr's  told me my ear looked better.  Not as swollen and red, the carcinoma is still in tack.  He asked me questions about proceeding with the Cochlear BAJA procedure for people with SSD (single sided deafness)  While Eric and I were in Tahiti, my right ear started to drain non stop and without going into too many details,  the smell was disgusting. The draining and pain took me back to my childhood. I dealt with this on a daily basis for years.  I was hesitant to see a new ENT.  Dr. Brian Borland had been my doctor since I was three.  The last time I saw him was when I was twenty nine.

I was referred to Dr. Barr's by another doctor at Mayo Clinic.  I love him,  although he works in the ENT department his official title is Otorhinolaryngology.  He is one of 12 doctors in the United States who do what he does.  I again am blessed not only with another great doctor but one who I can tell loves his patients and has been extremely helpful in explaining everything.

Since the last time I saw him my eardrum had broken again. Unfortunately this will require a more involved surgery.  I was waiting on the ear surgery until I was done with having dental surgery with Dr.  Paul Kelly.  This will be my third surgery with him and finish up the dental implant.

My 1st appointment was with Anthony Mendez P.A. He takes care of  all the nose issues for Dr. Barr's.  He very compassionate and kind.   After some idle chit chat he asked me some questions about my ear, then my nose.  Then came the time--here we go--the moment he sticks  2 sprays in each  numbs the nostril and the the throat.  To be quite honest it tastes like crap. It made me choke. I presented this young doctor with question "Do you enjoy looking up the noses of people all day?" he responded perfectly " I love my job" my reply made him laugh "Well I guess its better than other body cavities you could be looking at all day" This created a lot of laughs for him and I. While it was numbing he showed me my x ray--the septum is now in line the way it should be.  However in order to have that happen the doctor had to take great skill in removing the entire turbinate from the right side of my nose then he said "Let's just hope you don't have empty nose syndrome, that is an awful diagnosis" He could see the fear on my face and immediately started to back track, he said "No worries, it's probably nothing let's take a look"  1st he stuck the camera in my ear so I could see the left ear and the right ear--there it was on the big screen in front of my.  Wow, I thought it was a pin hole in my eardrum, Dr. Barr's could go in and fix easily.  NO, my entire eardrum is blown out in perfect circular form.  Now for the nose, he 1st looked in the left nose--looks good no boogers ha ha--then the right nostril--again no embarrassing boogies--but an extreme difference from the left, I could see the carcinoma and the hole.  With that being said, Anthony then gave me the diagnosis we were not wanting to hear.  I have empty nose syndrome. I can literally hold one nostril closed and still have air come out of the other, but the blockage feels like it is between my throat and nasal passage. Turbinatesd are important for the typical person, it sends messages to the brain when something is wrong in your sinus--mine is empty so therefore I cannot control the continual drainage or dryness of my nose--there is no surgery--but he gave me a medication to try daily.

Now on to see Dr. Freeman, my favorite pain specialist, he makes me laugh every time I see him. He will be injecting my right hip today, and my lower back.  My lower back has become a huge issue and has caused me to faint with pain, or my knees to buckle up and give out on me because of the pain.
As I am waiting in the "complaining" room today more typically known as the "waiting" room all I hear is complaining people, today a lady walked up to the sweet receptionist and demanded someone take her back and show her where her Physical Therapy will be (starting in 2 weeks) "I need someone to show it to me NOW" for some reason she reminded me of Veruca Salt in Willie Wonka and the Chocolate Factory "no daddy I want it now" WHOA lady back it up and settle down a notch was my thought.  Sitting directly behind me I could hear the couple arguing about why Mayo Clinic makes them fill out all these paper works--none of the other doctors do that...blah blah blah....the lady behind them pipes in and says "Oh Mayo Clinic loves to give us all extra work to do while they take up our sweet time in this waiting room waiting for doctors to get back from lunch" I did have to laugh out loud about that statement, I have felt that before too, but I do understand the paper work on pain related issues they need to know what level of pain you are experiencing now, not 3 months ago.
This woman was so sarcastic and rude to her daughter who was trying to help her get the papers done as soon as possible and this woman was being of now help to her at all--she said at one point "just mark all of them, my whole body hurts" the daughter being as patient as she could said "mom lets take this slow, is your pain constant but changes in intensity?"  she still continually belittled here daughter and  it was getting frustrating for me to listen to. I closed my eyes and wondered who of my children will take care of me, or will they send me alone or with a caregiver, have I been good enough and kind enough to them that they would want to help me?  Maybe this lady would feel different if she had no one to help her, I'd give anything to have a relationship with my mom.  I remember all of the prayers in my behalf, all of the kind gifts left anonymously on my doorstep, have I give more than I've taken?  if so I need to work on that one. I hope I never treat anyone like that.
Next is me, as they call my name I see Dr. Freeman in the hall and say "don't make me wait too long" he smiled and said "be with you soon" and soon he was, he asked me if I was writing in my journal I responded "yes, I always do when I come here, there is good things happening in your waiting room, and I want to remember them" he said "I hope you wrote that I am your favorite Doctor, so its worth listening to all the complainers"  I showed him where I did just that, my 1t line was now I get to see my favorite pain specialists.  As he gave me the injections, I told him "I don't like you anymore, this really hurts"--he said "but I will be your favorite in a few days, so I'm not worried"  I went off to recovery until I was stable enough to walk and drove home.  That is the update more to come in the next few weeks.

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--

to BaHa or not to BaHa

Today I had an Audi Consult for a Bone Anchored Hearing device called the Cochlear Baha3, at the Mayo Clinic.  If you're like me, you should be saying "huh?"   Basically what the Baha  does is reroutes and transfers the sound directly to my left hearing ear.  This makes it possible for me to perceive sounds from both sides, and from what I understand it is extremely effected for people with SSD (single-sided deafness)  The device does not give me any hearing recovery in the right ear, it merely channels the sound from my deaf ear to my hearing hearing inner ear, leaving my hearing ear undisturbed.  It is implanted into the bone behind my right ear, it  also offers a more natural pathway to hearing for people who cannot hear with hearing aids, and for children who might have middle or inner ear hearing problems.

When I was in elementary school I remember the teachers constantly telling my mother year after year, "she day dreams, and stares out the windows"  "Monya has a difficult time paying attention"  "Monya is delightful, however has a difficult time concentrating"  blah blah blah--- duh?  I was deaf in one ear, and had to sit on the back row of the classroom, because I was always taller than everyone else.  If I had this Baha Implant then, maybe I would of been a better student....let's just blame it on that for now.

Now I have a difficult decision to make, to Baha or not to Baha.  The doctor made it sound so easy, but I'm not sure I want to do this.  Today she put a simulator on my head so during our visit I was actually listening with a simulation of the Baha connected to the bone on my right ear, with a headband.  It was strange and unusual, I'm not sure if I could even explain it, and I do not have anything to compare it to.
I definitely do not want another surgery, and I really am not sure I want to hear.  I've gone 46 years without hearing in that ear and I think I do really well.  I've learned over the years to read lips really well.  I guess the question is, will this improve my quality of life? and am I willing to go through it?

Cochlear Baha without  Baha On

Implant with Baha on

a little FYI:

I have felt this un-easy feeling about one of my doctors, after much prayer and thinking I have decided to seek a 2nd opinion about my thyroid.  I always feel weird about changing doctors, mostly because I don't want to hurt feelings, but I'm ok with this and I know I need to since it is so heavy on my mind.