Surgery with Doctor Lettieri

 

SATURDAY, DECEMBER 12, 2015

Surgery with Doctor Lettieri

 It's been challenging to blog about current events. I've signed a book deal. However, I am going to keep up my blog. Soon, it will have the logo from my book. I will also have a FB page for caregivers, survivors, or anyone wanting to know how to comfort a friend, family member, or loved one during and after cancer has been diagnosed.

I entered the Mayo Clinic Hospital early on December 2, 2015. The last surgery I had with Dr. Lettieri was successful. He took a nerve from my leg and masterfully entered behind my left ear through the left side of my face under my lip. We were told if the surgery was a success, we would feel it grow one inch per month. It has done just that, and now it is time to finish the job. This is a very tedious surgery; finding a viable nerve from the right side of my face will take a few hours.

When I woke up in recovery, it was a little scary for Eric--not sure if I was having a stroke or reaction to medicine--either way, I dry heaved for over 24 hours. Did you know dry heaving hurts?

After neurology was quickly called to the rescue, I had CT-PT-MRI and brain scans--no sign of stroke--however, since I was still in much pain and dry heaving, I was kept for longer than expected.
My surgeon, Dr. Lettieri, is in Italy...What the Heck? Do Doctors get vacations?

I needed to go to the Mayo Clinic since the surgery sight was bleeding. I was temporarily fixed but will see another Surgeon when Dr. Lettieri returns. (Monday) Nothing was wrong with the surgeon I could see, but my ultimate choice is Dr. Lettieri--FOREVER- I made the mistake of going to Cleveland Clinic on a suggestion --HUGE MISTAKE -- I will never do that again.

While working on the nerve in my face, Dr. Lettieri had no choice but to try and work around my paraded gland. I know this gland and the damage that can happen if I don't get it fixed, but I am not seeing anyone else but Dr. Lettieri. The gland, for those of you who don't know, is the gland where your saliva generates. This gland was compromised, and my face has backed up blood, either running down my throat or out of my incision. We cannot keep it controlled with our own packing.

I'm looking forward to seeing Dr. Lettieri next week with more updates.

New Baby Coming

 

SATURDAY, SEPTEMBER 5, 2015

New Baby Coming

Today, as I entered the Mayo Clinic there was no piano playing. I proceeded to the lab to get blood drawn and tests necessary. My next stop was to see Doctor Northfelt, my oncologist.  I had an hour and a half wait. I heard the piano playing and decided to sit and wait in the peaceful lobby. I listened to the waterfall, and occasionally I could hear doctors and patients interacting as they walked by. But today I was grateful I could really enjoy the music coming from the Piano. This was much better than sitting on the third floor and smelling the sickness of chemo in the air. I put my head back and closed my eyes.  He started to play a medley of songs from The Sound of Music (my favorite movie of all time) It was enchanting to listen to. I remember when Eric and I visited Austria a few years ago after I finished my rounds of chemo and radiation. As each song played, I pictured that day we visited. I am a blessed lady. While there have been so many distractions in my life, in the past few years I have been blessed with so much. Patience is a virtue I never thought I could conquer, but in the case of my health, I have learned it is invaluable. I have been blessed with incredible doctors all from the Mayo Clinic, and Doctor Haberkamp from the Cleveland Clinic.

Last Sunday Blake and Chloe announced they are expecting their first baby in February. The doorbell rang, I answered, and outside was a set of three balloons with a note that said to read to the Family. I was then asked to pop the balloon that reads #1 on it, so I did. Inside was an ultrasound picture. I quickly wanted to read note #2 it read that someone in the family would be bringing grandchild #4 to join us in February. I thought for sure it was Kaitlyn and Brian. Scott and Haleigh, Blake, and Chloe have all been very verbal about waiting to have children. The third balloon was supposed to be popped by Eric, but I didn't know Oh, and I forgot to mention I was popping these balloons with a butcher knife. I quickly popped #3 to find out who it was.........Blake and Chloe......... Chloe said, "Monya look at the color of the confetti inside the balloon...." It was PINK. This will be our first granddaughter. I of course went crazy running around crying, happy, hugging them all the while with the butcher knife in my hand.... I'm sure it was an ugly sight, and I might have said a curse word... Eric and I are so happy. Blake has been such a great brother to his sisters, and compassionate and loving to me, and to Chloe, he will be an incredible dad. Chloe is so great with all the nephews and really loves them, I know she is going to be a wonderful mother.  I keep thinking about her mom who passed away with cancer during the time I was going through chemo. She is with our little granddaughter now, sharing with her all the love she has and passing on a legacy for Chloe to follow.

Hopes and dreams with Dr. Sal Lettieri

 

SATURDAY, AUGUST 1, 2015

Hopes and Dreams with Dr. Sal Lettieri

This time 6 years ago I waited anxiously for a negative diagnosis of cancer.  Not receiving the news I was expecting, looking back on this journey I've been on I realize I am being prepared. For what? That I can't answer, I'm not sure I want to know.  I would be lying if I said I have not had days when I want to crawl up in my bed, close my eyes, and not wake up.  I have felt unmeasurable pain, physical, mental, and spiritual.  I think we all want to believe we are "strong" If I had a dime for every time someone has told me how "strong" I am in the past 6 years, I'd be a rich woman. I'm grateful to those people.  So many times I have prayed for a miracle and felt abandoned. Now that I've cried enough tears to fill a swimming pool I trust in Him.  So many of us have a hard time recognizing the blessings that come in disguise of a trial.

The funny thing about that is, I am a rich woman. Not in a monetary way, but I am richer in the strength of who I am. I've been forced to live my life with loneliness, hardships, and pain. What if I had not experienced these things?  Where would I be now? Who would I be?  He has bigger and better plans for me. I am in the midst of fulfilling commitments and I know He will keep His promises to me. I will serve others, and be happy with whatever circumstances come my way.

I have had to learn to challenge my thinking and to lean on a positive environment of people.  I'm trying to learn how to balance my life.  Work, family, Nerium, Mayo Clinic, friends, personal development, and daily intentional goals have helped me to keep focused on what is most important.  I've had to be brave in circumstances where others don't understand or actually don't have the capacity to understand what this past year has done for me. Just when I thought I could never look myself in the mirror again, I became brave I let it define and refine me.  I learned that my face is not who I am.  I can't say I have fully embraced the idea of a partially paralyzed face.

A year ago I read a book that changed my life and added value to who I am, I will forever be grateful for having the knowledge before I read it, that I am a beloved woman of God. If not for having that testimony I probably would not have been able to make effective choices,. I've learned your thoughts either serve your growth or serve your decline. It's been proven we make an average of 90,000 thoughts every day. I've always been a journal writer, and a reader and I love good uplifting Christian music so when I read The Slight Edge by Jeff Olson, I was like a sponge. I can attest to the power of words but as a child words were usually to my detriment. The Slight Edge convinced and reconfirmed to me I have been led and whispered to by the spirit all these years, I'm exactly where I am supposed to be in my life.

Humility is a word I probably would have never used to describe myself 6 years ago. I'm progressing by studying everything I can get my hands on. While studying I often think of all the people who have touched my life. Who I think are a true example of humility. Not one of these people knows they are humble, isn't that interesting? It is who they are, an attribute they have mastered without knowing they have. Some of these people have had devastating events happen in their lives and learned to control their thoughts and actions to mirror match a Christlike attitude. Others seem to not have had any apparent significant trials in their lives. They surround themselves or have been surrounded by proactive people who have built them up, and showed them compassion and unconditional love. The attribute of Humility is such a blessing, and not easy to accomplish.

During my reading of the Slight Edge and studying scriptures, I am finally able to say I believe in the power of the brain and how our thoughts, positive or negative can affect everything. I made the choice to look at myself in the mirror every day and say "You will smile someday" It's been over a year, and I've had 3 doctors tell me I will never smile again, I will never have facial movement on the right side of my face. I'm glad to report not all doctors are in charge of the outcome of a positive mental attitude. Dr. Lettieri told me I would smile again. He has encouraged me to continue to work that muscle.  Every morning for a year I tell myself over and over again "I will smile again" and then I tell my brain to tell my mouth to move. Dr. Lettieri has never given up on me, he has never said "You Can't or you Won't" It sometimes requires a surgical procedure but I am slowly but surely starting to tell my brain to simultaneously smile when I tell it to. It's working, I am reaping the rewards of my daily affirmations. It's a slight smile, but what's more important is realizing, just like reading from a good book every day, kneeling to pray every day, having faith all things I've done all my life are things I have mastered by doing them receptively. Those things are a part of who I am, If I stopped doing those things it would be like not brushing my teeth every day, eventually they would rot. It really has been such a slight change, but adding it to my daily routine has strengthened not only my brain and facial muscle but also led me to believe an arrow could be shot at me and I could repel it.

I am endeared to Dr. Lettieri, and to Heather Lucas. She has seen me through so much.  I miss Dr. Kreymerman and wish he was here to see my progress. Dr. Lettieri has now been renamed as my "smile doctor."

He said I would, I said I could and I am making progress. I am beginning to dream again, to have hope for my future. Prayer is the greatest miracle in my life when burdens have weighed me down, prayer from so many people has helped me to believe in myself again.  Putting my faith in Him I believe I have even greater miracles to come. He could take away all of this but His plan is perfect in every way. These trials are refining me into the woman I've always dreamed of being.

Post-Op with Dr. Sal Lettieri

 

THURSDAY, JULY 2, 2015

Post-Op with Dr. Sal Lettieri

This past week has been challenging, not because of the pain from the surgery. Staying home and not being able to drive has been difficult. Today, I had my post-op appointment with Dr. Lettieri. Sonya was so sweet to take me to Mayo. I don't like anyone to go with me because it is not a fun way to spend time. This time, I was forced to ask for help; Eric could not go because my appointment time was changed at the last minute. I wondered what she would think of Dr. Lettieri and hoped she would love him as much as I do. I warned her as soon as I introduced her as my sister Sonya, he would have an intelligent comeback about Monya-Sonya. I was right, and he asked why. "I said it was the '60s."  He laughed and asked if we had another sister named Tonya, and of course, I said, "Oh no, that would be too easy. Her name is Kris.
Today, he had a young resident with him, Dr. Deep, charming and incredibly young. Immediately, Dr. Lettieri announced he was not happy with the eye surgery. We will wait until all the swelling goes down, and then he will decide how to proceed with more surgery. My eyes started to open yesterday, dripping more than ever. He said it would get worse and wished he had been a little more aggressive with the bottom lid; it's drooping more than Dr. L wanted it to be.
Dr. Lettieri was pleased about my nerve cross graft he did in February; it is even better than he had expected. I plan to wait for eye surgery and have him do that simultaneously with the nerve surgery. I didn't mention that to him today; I will see him again soon.
Heather took out the rest of the stitches in my eye while Dr. Deep and Dr. Lettieri talked doctor talk-way over my head.
Today was good news about the nerve but surprising news about my eye. I could tell he was disappointed. I told him, "It's OK," and he said, "Not for me."  I assumed he was being hard on himself because he's a perfectionist. He said, "No, that has nothing to do with it. I just want you to have it working at the best it can, and I know it won't, so I want to fix it." He continued telling me I would have more drainage than I had before if I didn't take care of it.
Many people have questioned my choices; guess what? That's OK. I realize you are not living my life. You are not the one who has to kneel and ask what to do. I feel entirely comfortable with the decisions I have made. Many have given me natural path choices and questioned my choice to go medicinal; it's OK, too. Everyone has a different thought process; these choices were made by relying on the Lord to answer me and lead me to the right places. I only doubted a decision when I went to Cleveland Clinic. I felt rushed to make an answer, and Dr. Lettieri was out of the country when this all happened a year ago. We made a fast reactive choice, based on the fact we were told with a nerve we only had a small gateway--because I didn't know a "small" gateway didn't mean I needed it taken care of within a week or two. I could have waited for Dr. Lettieri. I don't look at things that way; my mind doesn't process them that way. If I hadn't gone to Cleveland Clinic, I would not appreciate and love Dr. Lettieri like I do; I wouldn't appreciate Mayo Clinic like I do. So, to those skeptics who like to give me their opinions, I will not apologize for following my heart, listening to the spirit, and doing what we thought was best at the time.

Surgery With Dr. Sal Lettieri

 

THURSDAY, JULY 2, 2015

Surgery with Dr. Sal Lettieri

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

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

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

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

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

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

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.

Seeds of Hope

 

SATURDAY, MAY 30, 2015

Seeds of Hope

Those who read my blog know I talk a lot about having Hope in my life. When I have a  seed of Hope, I know it gives me good things to look forward to in my life. Hope always gives birth to the overwhelming trials of life. It always believe in the best, even in the face of my worst circumstances. For believers in Christ, Hope is much more than a wish, yearning for a positive outlook; it is based on the promises of God. I'm grateful for the Hope Doctor Lettieri has given me for a positive outlook on my nerve surgery.

I can have Hope in life no matter what surrounds me because I believe in a Heavenly Father who cares, knows me by name (Isaiah 45:3), understands the desires of my heart (1 Chronicles 28:9), and knew me before I was formed in my mother's womb (Jeremiah 1:5).

Recently, I watched an interview with the miracle Flight #1549 passengers. Instead of ending in a disastrous crash, it gracefully landed in the Hudson River in New York City. Knowing this was a US Airways flight, I had some exposure to the story and was very proud of the captain and how he landed. The outcome was nothing short of a miracle. In fact, it was being referred to as "the miracle on the Hudson" because all 152 passengers and all the crew survived.

I thought about the passengers and what must have been racing through their minds in those final minutes before the impact. During the cries and prayers, I'm confident in saying there was one thing they all desperately held on to ......Hope.

Some passengers hoped to kiss their spouse again, others to hug their son or daughter, and some to make things right with a friend or family member. As the plane was about to hit the water, they knew their lives were at stake. Many were praying, and all were hoping for a miracle. Then the impact came, and a fantastic scene unfolded with passengers streaming onto the aircraft's wings. Eric and I watched the news replaying the scene repeatedly and watched the fantastic rescue. 

While I watched this documentary, I couldn't help but think of the many people who feel their life is like that plane. Sometimes I feel like I'm going down, leaving me only to hope that things might be different someday. When I have those feelings, it's difficult to shake them off; sometimes, it takes days or weeks. Then I remember the promises, the covenants made, and I have Hope again.

I know people who are facing setbacks with their jobs or relationships. I know people struggling financially or who are feeling the pressures of life. It's sometimes overwhelming.   Knowing Heavenly Father is for me, not against me, gives Hope for a brighter future. His love has no boundaries. 

I must constantly ask myself: Am I solid like a rock, or am I allowing myself to sink in the sand?

I recently let the enemy, Satan, own my thoughts; I've even allowed others to dictate my divine destiny by getting my head. I need to always keep Hope alive and never ever give up. I know God always, no matter what, has a solution for me. I know this because he knows me; my destiny was chosen before I came to earth. He had rescued me when I was in depths of despair.

So far, He has not let me down; when I trust Him, I am never disappointed.