Dr. Sal Lettieri Eye Surgery

 

WEDNESDAY, JUNE 24, 2015

Dr. Sal Lettieri's Eye Surgery

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

I cannot wear my cochlear device. It is an 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 listen to that thing rings throughout my home's walls). 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 eyelid 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, so why not take it home? That's the easy part; the more in-depth portion of the eye surgery is to fix the chronic dry eye--I 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 am 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.

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 

Cleveland Clinic Day 1

 

TUESDAY, JUNE 3, 2014

Cleveland Clinic Day 1

This is the picture Dr. Barrs 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 highly impressed with his bedside manner and credentials; however, he had not received any of my reports from the Mayo Clinic. I got them and actually faxed them and emailed 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 paperwork 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--the 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, and soon he came in, and again I had to tell the story as he typed it into his computer. He seemed concerned for me and could obviously see my face was affected. He made all the routine checkpoints to see the damage to 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 was clear of all infection and was healed. He explained, and I have agreed with this all along, and so has Eric.....no plastics doctor should be going in during ENT surgery to repair 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. Barrs 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 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 an 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 started to bubble up with tears as they trickled down my cheeks, finally landing on my arm. I was a mess, and 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 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 said he is sweet and compassionate, and an excellent resource for me. He then did a quick assessment of my ear, the routine facial tests, like raising our eyebrow, smiling, etc...he mumbled to himself, "yeah, there is nothing animated about this right side."  He then explained he could not do what I needed to be done on my facial paralysis until I got the ear healed, also that I would have several surgeries to fix my face. I cried; I never call in front of my doctors; I suck it up and do what they say to do. This time, I'm exhausted and starting to feel the burden of this all; my shoulders are heavy with responsibility. I'm glad Diana was there; with her nursing background, she got all the answers to questions I would have 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 felt very hopeful and even told me 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 a good night's sleep; my mind has continually been on this ear problem, and I have no time to think of anything else. Still praying for a miracle.

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.

"Oh dear, 'Now What?"

THURSDAY, FEBRUARY 20, 2014

"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 Mayo to have it checked out. By the time I got there, I had to change out the bloody cotton balls 4 times, which were saturated. It was not painful, just messy.

When I arrived at the Mayo Clinic, 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. Still, 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 had 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 between us. I was able to ask about her medical issues. She was in a horrible car accident and rushed to the hospital, and when she woke up, they were gone. I asked her how that made her feel and that it must have 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 a while 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 consider people judgmental and rude, and some stare, but most 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 loudspeaker, and off I went--saying goodbye, knowing I will probably not ever see this woman again, but wanting her to realize 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 is still bleeding, but Doctor Barrs is in surgery and cannot see me. He sent in his resident, the same one who saw me in the hospital and would not give me pain meds and overlooked the vast softball-size hematoma on my head--"Oh dear, now what?" was my thought. Like always, went over my medication list, then started her vacuum sucking out of my ear. My balance was off for quite a while--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. Barrs 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

FRIDAY, JANUARY 17, 2014

Results from Cultures

Today is Friday, January 17--

As I said before, during surgery, they were able to take the tumor out intact--no problems, YAY--that is good news. However, yesterday as I met with Dr. Barrs 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 easy to rid your body of. 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 complicate treatment in addition to the polymicrobial nature of the infection.

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. However, bacteria- Mia, in the absence of an underlying source, is extremely 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 felt. I can speak one-on-one with someone by reading lips and hearing slightly what is being said, but I do not do well in groups of people. It's hard for me to understand where the sounds are coming from. His RN Kathleen explained that this is normal for people going through these symptoms.

I then turned and asked Dr. Barrs why or where the fluid was 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 heard 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 to be 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.
Regarding the right ear recovery, Dr. Barr's said it would 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 on February 4, but since my job relies completely on the ability to hear, Dr. Barrs 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.

LABELS: BAHA, DR BARRS, HEARING, JOURNALING 

Silence is Golden

 

WEDNESDAY, JANUARY 8, 2014

Silence is Golden

Today is Tuesday, January 7, 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 place in 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 entirely different to me. In joking, my family has, through the years, made light of me not being 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 an earplug in one ear, so I can have complete silence when I sleep. My family had always thought it was funny to walk in when they knew I had the ear plug in and start signing to me or talking really quiet, so I had 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 earplug out, and without fail, they would say "never mind," and I'd put the plug back in, again they began to talk; I pulled 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 hope 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 thirty 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 okay, but when I am in a restaurant or a place with a lot of sound going on, it is challenging to balance out where the sound is coming from. I get anxiety and fear that is hard to explain, right now I could be 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-Washed the Blood Out of My Hair

 

MONDAY, JANUARY 6, 2014

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 was a challenging 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 combing through it, but clumps were falling. Two days later, still a huge chunk, I asked about it, and I was told that the amount of anesthesia I was given during such a long surgery sometimes affects 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 not thought about it since. Sometimes those tiny acts of kindness are the ones that mean the most to me and 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 can serve others even in little ways, it shows our desire to be more like HIM. Sometimes those acts of service are complex and can stretch us to places we may not feel comfortable. But I believe in all of us there is Charity, a gift from God. He has given it to us and expects us to act upon it. When we can 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 an easy task for Haleigh to come to my home and clean blood out of her mother's hair, but I was grateful she did it. Showing these Christlike Attributes helps us to gain the potential to become more like HIM. When we do it with a pure heart, avoiding negative feelings, judgment, and criticism, it is easier to understand another person's point of view, strengthening our faith and developing a life of service and charity.

Could Have Been Worse

 

SUNDAY, JANUARY 05, 2014

Could Have Been Worse

Today is Friday, January 03

Yesterday, I had an appointment with my surgeon. I stayed off pain medicine except Advil to 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 my ears covered so
I usually wear a beanie.

I checked in on time at 2:50 pm for a 3:00 pm appointment; I did not wait long at all I was in the doctor's 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 made a second appearance. She asked 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. Barrs; she said he would be in shortly. She then proceeded to poke around in my ear, 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 something in my ear, he told her about the black area in my ear was dead skin. 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 and cut off all the dead black 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 laid me back, told me to hold tight and that things would 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 tough to keep them open, and it took several minutes to regain some normal visual. The vacuuming was extremely painful, especially since all I had was Advil. Dr. Barr gave me a new regimen for cleaning my ear to see if it would 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 had difficulty 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 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 first put tubes in that ear to try to drain it; if that does not work, then, well, I guess it's time for me to start learning sign language.

First, he took the cap off the implant, so it could heal. We will not be able to connect to the BAHA until March or April, depending on the healing. Now I have a screw visually 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 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 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

MONDAY, DECEMBER 30, 2013

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 could 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 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 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 making this happen.

I apologize if I offended someone in my last post; I know I did by the comment left, so I have decided it is best to make my words private. I read it repeatedly, and I am unsure if the person thought what I was saying was not true or if they were upset at what the doctor said. Still, 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

 

Christmas 2013

 

THURSDAY, DECEMBER 26, 2013

The Lord Loves Me

Tuesday, December 24--

This week I got a phone call from my sister Sonya, her son and his wife Katie are having a baby in a couple of months. Sonya was so excited because she had all boys, and now finally, they had their baby girl in the family; her phone call was to let me know Katie had gone to her regular appointment and there was no heartbeat, and the baby had died. It was heartbreaking, and Jimmie was in California. She was induced to give birth to Dannie Jo, named after Katie's dad; she was 12" long and weighed 1.3 pounds. Yesterday we attended her graveside; nothing has touched me like this, seeing Jimmie carry this tiny little casket to the burial area. Then he and Katie stood and talked about their love for Dannie Jo and the plan of salvation. I was impressed with their knowledge of the method of salvation. There is no doubt in my mind or theirs that they will hold and love and hug and kiss Dannie Jo again someday. She is a good reason for us all to live like Christ did so we can be with her again --

Also, in the Williams family, Blake was admitted to Banner Gateway early this morning; he has been to the ER a couple of times this week and has been sent home with no answers. He has incredible pain in his stomach, throwing up, diarrhea, and complete frustration, not knowing what the problem is. They took several cultures, and we still have no answers. He was discharged from the hospital with antibiotics, pain meds, and a referral to a gastro Doctor. Also, last night our little Recker was in the ER, I don't understand much about his diagnosis (Autism), but he has breathing problems. When he gets a cold, it is intensified. Last night he was gasping for breath, so Kayla took him to the ER at Phoenix Children's Hospital. He is home and doing well; he was given some breathing treatments.

After spending time at the hospital today, when I got home, the right side of my face was very swollen, Sonya had said something about it yesterday, but I didn't notice anything except that I cannot eat much as my jaw hurts when I open my mouth, so soup has been about all I can eat. Last night when I washed my face, I could see the swollen areas Sonya was talking about, and it felt different on that side when I put on the face lotion. Tonight, I had Sonya and Greg come over and look at the inside of my ear with a flashlight, Eric was gone, and I could not see inside my ear; I always put two pieces of cotton in my ear like the Doctor showed me how to do, but I could not find the other one. Greg did the looking, and Sonya held the flashlight--not a fun sight to see, I'm sure; I asked Greg to take a picture so I could see what it looked like.

Sonya had some tears in her eyes, but I know she has had so much going on that this was not what she was worried about. The pain is still unmanageable, and I am so concerned about getting germs, but honestly, I do not feel great and have not left my home other than Eric taking me for a ride, and that was not what I had expected. Tomorrow is Christmas, and Eric and I both looked at each other and said we do not feel the Christmas spirit we usually do. Let's hope 2014 will be an uplifting and learning year without surgery or pain.

Christmas Day 2013

I woke up this morning to my sweet Ezra in my face, smiling big. Oh, I love my grandchildren. They certainly can turn a frown into a smile. Neither Ez nor Recker understood or knew what Christmas was. We enjoyed giving them some little things and spending time with Kayla and Jeremy, but the second Ezra got tired, I took the opportunity to feed him his bottle in my bed and take a nap next to him. We slept for a while until Blake, Chloe, Scott, and Haleigh showed up; Kaitlyn and Brian are in Utah, so we will celebrate with them when they get home from spending time with the Wrights. I must enjoy my time with Ezra when Kaitlyn is gone because she really does like to hug him...he loves her and lights up when she comes into the room.

While I write this post, it is midnight, and I am sewing, blogging, and watching The Sound of Music--my favorite movie.

--Eric is fast asleep. He tried his hardest to get someone to go to see a movie tonight, but no luck. I'm glad he has such a great relationship with his son-in-laws and Blake. I looked at him tonight before he went to sleep and said, "You know how much I love you?" He smiled and said, "not more than I love you," and that was music to my ears; I suppose there was no better way to go to sleep at night. Tomorrow I will see the surgeon for a 2nd opinion, but I told Sonya yesterday I don't consider it "giving up," but I really am done with all the cancer stuff; it is no way to live, and my quality of life may not be the same as what others may think they would want. So, let's pray tonight that the news will be good tomorrow. Tonight, I have a lot to be grateful for another Christmas I have been given to spend with my family. The Lord loves me.

He Knows Me

 

WEDNESDAY, DECEMBER 18, 2013

He Knows Me

It's difficult to know yourself; I mean, know yourself well enough to know when enough is enough. I woke up this morning feeling like I've been here forever,  depressed; I drug myself out of 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 to find me---light a torch under me--writing here on this blog is where I can see 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 genuinely 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, I would have run my car off a cliff; that was the plan. But I decided that day to take on HIS name, I turned my car around, and from that day forward, I have been faithful 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 run deep, this is a world of weakness, and we live in it. When my mind starts to wander over to that side, I know it's time to be thankful, grateful, 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 hearts 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 through my eyes with tears. I am so impatient, even when I know HE is teaching me, step by step--I cannot think of 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, perhaps I have not tried enough, maybe I have not served sufficient; there is so much more for me to know; 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 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 a pinch or two--but nothing like getting my expanders 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 restraints while he was doing the surgery, he could not do any more digging, and taking the chance 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 made 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 was 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 knew 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--haha, sometimes I make jokes when I'm worried. Today the hematoma has gone down in size but is oozing blister-like stuff, and the good news is the swelling is going down on the actual ear itself.