Tag: Surgery

Memory Of Cleveland Clinic

Memory Of Cleveland Clinic

Every 3rd of July I am reminded of fighting for my life in The Cleveland Clinic. Four years ago today I was in surgery, literally hoping for a miracle. Little did I know the miracle was sitting right here in Arizona, with Doctor Lettieri.

On July 3rd 2014 I was rolled into surgery, Eric gave me a kiss on the forehead as they wheeled me into the operating room. Tears rolled down my cheeks onto the pillow, nurses kindly asked what they could do to help; shaking my head, watching them walk away I knew there was nothing anyone could do. Not even with the best surgeons on the face of the earth, no one could be able to bring my smile back.

The worst was still ahead of me, waking up in the recovery room after an eleven hour surgery I felt my head. It was full of staples, like a train track from one side to the other and down the back of my skull. My ear was pounding and swollen. I just wanted to see Eric and go home; after seven weeks in Cleveland I was depressed, sad and disoriented.

The next day, the fourth of July 2014 is a day I will never forget. No attending’s were in the ICU, the residents were in charge for the Holiday. Pain beyond my belief was surging through my body; a senior resident forgot to put orders in for pain medicine; I thought I would die on that day. I was prepared with letters to my children and dear husband. When the resident did not answer page after page to come to the ICU-I went further and further into a deep dark place, actually wanting my life to end because the pain was so bad. Nurses rubbed my legs and listened to me sing “Be Still My Soul” and “I am a Child of God” over and over again. It was an hour and fifteen minutes the senior resident finally make it to my room, followed behind him were other junior residents. He questioned my pain like I was faking; wondered why I was crying, and asked me too many questions; which I believe now was a senior resident showing off for the junior residents. I was gasping for air I couldn’t speak without trembling, he finally gave me the pain medicine. Even after the pain medicine was in my system my body shook like a baby, composing myself was difficult.

This is one of the junior residents Brendan Alleyne-he came to visit me after that incident and held my hand. The compassion he showed was nothing I will ever forget, I wish I could tell him what his acts of kindness did for my faith in the future of medicine. I’m thinking about him today, Dr. Lettieri is constantly telling me about the ego’s of residents, just like the senior resident I encountered at Cleveland Clinic. They forget who they are serving, I often wonder if he would have treated me different if I had been his mother, wife or child. Thank you Dr. Alleyne wherever you are today, I believe you are caring and sharing for your own patients now and hopefully learned something from this experience that will help you always remember patients are real people, with real families and a story to tell.

XOXO Monya

His Grace

His Grace

 

So Much To See

I remember taking this picture in 2015, just a year after being diagnosed with facial paralysis. Frenchie took me on a trip between surgeries; funny I can’t remember where we were. We’ve been on so many trips together trying hard to mark everything off of my bucket list. I do recall looking out of the window far above the clouds and seeing this breath-taking view; it was at this moment I realized I have taken so much for granted; our world is beautiful so many nooks and crannies we will never explore, but just knowing they are out there gives me hope and a sense of a spirit much larger than my soul can imagine.

There is so much to see in this beautiful world of ours; but my favorite place to be is with my family, there is no other joy and peace I feel watching my children grow into happy, healthy adults who cherish one another and understand the importance of time, time together making memories to last for eternity.

I started back to work yesterday, it was physically painful however I’ll take the pain over depression any day any time. There is something about being through so many surgeries, procedures, pokes and tests that make me wonder once again what I am supposed to be learning.  I am well aware of all my weaknesses-I say damn and hell every once in a while, I judge people when I should be reaching out to them, I’m simply not perfect and not ready to die. I try daily to be better than I was the day before and so often fail in my attempt; but one thing I never do is leave my Heavenly Father out of my daily routine. He guides me and helps me to become the woman I strive to be.

This was me on May 1st, 2014 I thought I was so happy, look at my smile, my beautiful teeth. Oh how I loved to smile.  I’d finished chemo, radiation and several surgeries and was well on my way to being ‘ok’ with living with cancer. I see some wrinkles, but mostly I see joy in my eyes for the happiness I felt being alive. Then life came to a screeching halt and I was once again faced with an unfortunate life altering transfiguration.

On May 15, 2014 this was me lying in the Mayo Clinic hospital fighting for my life.  There was a sadness I had never experienced. My life would never be the same, my face would show the sadness and sorrow. There was simply no one on earth who could possibly understand what it felt like to hear my surgeon tell me “I’m sorry to tell you, your face will never be the same again, you need to get used to the new you”

That task seemed daunting and unachievable I didn’t know how I could face a world where physical beauty had become the main focus for so many people. I never realized I was one of those people, I was vain I wanted my smile back I wanted to be normal, heck I’d even take typical. With help from Dr.Lettieri teaching me grace comes from within, I have been able to somewhat come to accept who I am, what I am meant to do here on earth; and it is definitely not to be a fashion model. My Heavenly Father has so much more in store for me and I’ve come to understand true authenticity and absolute beauty comes from knowing who you are and where you are going, it comes from first loving yourself no matter the circumstances life throws at us.  It certainly sounds easier than it actually is to do, I have spent 3 years working on myself, studying and trying to teach our  youth to love their life. If all of us could see ourselves through our Father in Heaven’s eyes I think we would be surprised to know what He sees in each of us; I believe He knows my heart, He feels my pain but mostly He understands I am trying everyday to become a worthy woman of infinite worth in His eyes.

This was me just a few days ago at Shane Wright’s luncheon after his funeral; I love this picture with Archer, still bruised and swollen looking at this picture I realize my grandchildren will never know the face or person I used to be they only know Bonbon exactly how I am today, and they love me unconditionally as I do them. The woman in this picture has come a long way with still so much to learn about herself and other’s. There is no better Hope than knowing I have many years to learn and teach other’s how to cope with unforeseen circumstances and to accept to love themselves in away no one on earth can understand. I am truly blessed and Amazed at the grace He so fully offers all of us.

Monya Bonbon

Dr. Lettieri Post Op

Dr. Lettieri Post Op

This is the REAL Dr. Lettieri–my Flip Phone Doctor is back-with his Converse, humor and beautiful blue eyes. After assessing my bruising and clotting, we have decided to wait a couple of weeks to see how it looks-we are not afraid of the blood clots traveling. My face feels like it did when I had Capsular Contracture in my breasts–extremely hard to the touch–but the bruising is almost gone. Dr. Lettieri said because of how much work he needed to do my face will take longer to heal. I will be undergoing a few more surgeries this year. My sinus reconstruction will be toward the end of the year, and Dr. Lettieri referred me to someone he said he would “allow to operate on his family’ If knew Dr. Lettieri like I do that is quite a compliment. He picked up  his handy dandy flip phone and contacted Dr. Howard’s office to send me asap. It’s nice to have a surgeon who is humble enough to understand there maybe another doctor (who was trained by Lettieri) he trusts and admires. I told him how nervous I was to see a different surgeon, he explained to me on the next surgery Dr. Lettieri will be in attendance, but not for the nasal reconstruction, to perform the rest of the facial reconstruction. (and possibly to check in on me) So three surgeries in one if if works out.–Can’t wait for that recovery;  if it wasn’t for my perfectionist surgeon he would have kicked my out and given up on my by now.

Dr. Lettieri is Italian and loves Canolis–so this is what I brought him today. The plate says “Be Happy Always”

As I waited for Dr. Lettieri, I realized they brought me into a surgical procedure room. This is the bright light he uses to see EVERYTHING–it’s pretty bright.

One time on my way to MIHS to visit with Dr. Lettieri, I watched 2 teens having full on sex under this tree. I honked; many times yelling at them to stop. I seriously would have given anything to have a hose and spray them down likes dogs in heat. I told Dr.Lettieri since it was happening just outside his window but off campus; his answer “Nothing surprises me here, I’ve seen it all” I shouldn’t have been surprised either; it did shock me. Today as I was leaving the Clinic I watched a van open and police officers escort a prisoner in an orange jump suit and shackled by his feet, secured with handcuffs on his arms.

I didn’t judge him, he was typical looking nothing to scare or offend me, in fact it made me want to show compassion for him, especially not knowing is story or the journey he has been on.

Yes I am definitely in a surgical room–what are they going to do to me today?

Bored……? Yes, soon Dr. Lettieri entered the room, stuck his large hands into my mouth to feel for the blood clot, and I’m pretty sure created another bruise. However, we are getting close to perfection he was very happy with the surgery outcome; still he has some follow up-but we need the swelling and bruising to go down, he thinks he can work on it at the same time Dr. Howard performs my nasal reconstruction; not crossing my fingers on that one. Dr. Lettieri hugged me and said “I will see you soon, we have been through a lot together but remember I’d let Dr. Howard work on me, you need to listen to me she’s good” I now have an appointment with her in the end of June–but l’m not having another surgery until I decide.

Monya Bonbon

 

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Dr. Lettieri (Update Post Op)

Dr. Lettieri (Update Post Op)

This morning Frenchie drove me to Mayo Clinic to have a little visit with Dr. Lettieri and Lindsay his resident (she’s super sweet) This is what I do while I wait, I sit in Dr. Lettieri’s chair and pretend to be him  until he walks in with his big smile and with no hesitation starred at my face, starts to examine-he didn’t even recognize I was sitting in THE CHAIR–the same one I’ve received amazingly bad and good news from many times, not necessarily from him but Dr.Kreymerman.

As you an see I still have some significant swelling and that dang hematoma–not my best look-but still grateful for an exceptional surgeon like Dr. Lettieri. He stuck his fingers in my mouth squeezed (that hurt) We sat and laughed, he asked Frenchie about business blah blah blah. Then made an appointment for me to get an ultra sound guided probe to look for liquid. So many surgeons have tried to help me and I adore them, especially Dr.Kreymerman who I am still friends with, but at this moment Dr. Lettieri is my hero–We discussed a sinus reconstruction…I told him since the chemo broke my septum I cannot breathe, I carry a Kleenex ALWAYS no matter what winter, spring, summer and fall…I need it to go away it is disrupting my life. I simply cannot live with it like this dripping and clogging. When I am pubic speaking my nose runs–then later I get a the comment “get that lady a Kleenex, that is disgusting” I am not living a quality life with this problem. More about that later.

Next stop my favorite Audrey–she’s been with me at Mayo since day one, cheering me on. She is a dear friend now with so much to offer the world. Her smile lights up any room and she always greets me with a sincere hug and kiss on the cheek.

After meeting with Audrey we headed to the next appointment on our itinerary–an ultra sound check for the hematoma. Frenchie and I got checked in and I told him I wanted to take a picture of this lit up sign. I proceeded to take the picture from down the hall and a security guard walked up to me and said “Um, you can’t take pictures in here” I replied “Since when?” She said “Since forever, it’s never been allowed, even if you were outside taking a picture we would ask for you to delete it.” I was so flabbergasted I ssid “How long have you worked here at Mayo Clinic?” she then looked at me and said with pride “I’ve been here a year” I looked her in the eye and said “Guess how long I’ve been here? …… 8 years, and I have pictures from every department I have ever been too” She very politely said “Well it’s against the rules” Just then I heard the registration and admittance lady call my name. I registered got my hospital hospitla band, showed the proof of insurance etc and asked the woman “Why am I not allowed to take pictures around here anymore?” She asked “Who told you that you couldn’t?” I pointed to the security guard, then the kind lady said “Unless it’s a new rule I don’t know, let me go check with my manager” She soon came back and said “Honey you can take pictures of anything you want, and if anyone gives you a problem tell them to see Jason”  I went and sat down to tell Frenchie about it and he went to the security guard and said “I am going to take a picture of my wife in front of that Mayo sign” She tried the same thing on him, but he quickly said “Go see Jason if you have a problem” …..well I got my picture and decided since we had a couple hours of down time I was going to take pictures of everything.

I love Mayo Clinic

Suddenly a flock of new baby 1st year residents came bubbly walking through ready for their lunch break. During this recovery I did some binge TV watching Grey’s Anatomy–totally reminded me of that.

I love this piano, especially when it is being played, but I also spy Frenchie taking a little nap. This is a perfect example of why I usually go so-lo to my appointments, it always makes me feel so bad when people have to sit around and wait for me. Frenchie is never bothered, but it does bother me when I know he could be out doing something fun on his one day off.

I’ll never forget Eric sitting in this room just after we were told my face would never be the same again….I wandered off with a pic line handing from my chest in a total fog…..

While ‘Code Blue’ was being called to the entrance of Mayo Clinic, Frenchie told me to stay away but I walked towards it..I needed to see what was going on.  What I saw was a person who dropped down on their way out. They worked very hard to keep this person alive, but right in front of me they took their last breath right here ⇡. The worst part….I was jealous, when I look back on that it was a dark and dreary time; I don’t feel like that any longer. I have 7 grandchildren now, and a chance to become better for the hand I have been dealt. Still when I walk through this area I always remember that day.

I decided to take a little walk while Frenchie took a little nap. There really is so much to see in this massive building.
Through these doors many lives are saved and many are lost. I’m still around and no security guard is going to tell me I cant take a picture of my second home.
I walked by this area and had to stand, stare and laugh. I used to meet Heather and Dr. Kreymerman quite often for lunch. One day I brought lunch from Paradise Bakery, text them and told them I was waiting whenever they were ready. Soon I received a text from Heather saying “Where are you, I can’t see you anywhere” My response “I’m outside, it’s beautiful let’s eat out here” When Dr. Kreymerman and Heather showed up they laughed at me, when I inquired why it was so funny. Dr. Kreymerman said “You know this area is for Attendings, you know doctors? Patients don’t eat here” Well, to say the least I didn’t move; we ate with the docs.
If you’ve ever been to Mayo Clinic finding a parking place is like finding a needle in a haystack. I parked here front and center many times while going through treatments. These are actually coveted parking places, well only to the radiated or chemo patient.

My beeper went off and I darted to wake up Frenchie and get admitted. When we walked in they called me immediately. The Technician took me back had me lay on a table and began asking questions “So why are you here? We have no notes from a doctor” I rolled my eyes “Do you know Dr. Lettieri?” “Nope never heard of him, what are we supposed to be doing today?” I explained about the hematoma….not a word out of nurse crabby face. She called in Dr. Patel I asked him “Do you know Dr. Lettieri?” “Well of course, I have his orders here. We are going to use an ultra sound guided way to find exactly where the hematoma is then we will extract the blood”  He asked me how much I liked Dr. Lettieri….right out of my mouth before he could even finish I said “Oh, I love him, he’s brilliant, I’d never let anyone work on me but him” …”So how many surgeries have you had with him?” …”Ummm, too many to count” Then he said something I won’t forget…”I like you, you have a great sense of humor, I’m sure Dr. Lettieri likes that about you” Then he said it was time to clean the area and insert the needle. I love when they say “This will only sting a little” After inserting the needle and having nothing come out, he said “Sorry I need a bigger needle and you are going to feel some pressure” Since I was facing the ultra sound screen and could see the needle being inserted I asked for my eyes to be covered until they were finished. End result…it felt like he was adding all his weight to the needle the pressure was so intense but I made it through. All of the hematoma could not be removed so unless they spread I will deal with them until I see Dr. L again.

As Eric and I walked out to the car, we wanted to stay out of the sun so we strolled through the new Cancer Center–I told Frenchie “we are walking straight through, not going to the third floor” He looked confused “The chemo lab, the smells…not today”
One of the original Mayo Clinic ambulance’s. I love the wording on the railing “Swiftly and Safely-Transporting Patients to Mayo Clinic” — how cool is this?

last picture on our way out through the cafeteria area–Next time a security guard tells me I can’t take pictures at Mayo Clinic…Go see Jason.

I will see Dr. Lettieri in a couple of weeks and when the swelling goes down and there is still a hematoma then Dr. Lettieri will make an incision in my lower cheek area and clean out the blood clotted area.

Monya Bonbon

 

 

 

 

 

 

 

Fix My Face

Fix My Face

This is my current situation….Dr. Lettieri is in Nairobi saving lives (I love that) but I am here, stuck in a recovery bed drinking dinner from a straw.  Might be a good time to explore using my Vitamix, I wonder if a steak could be liquified? — a friend suggested it as a joke but hey I’m up for trying anything. Mix in some spinach you never know I might have a new trend starting right here in my Arizona house.

Seriously though, I never knew bruises healed so slowly–the swelling has gone down a lot. I have a hematoma in my cheek, and on the top of my head it feels like a rotten tomato, you can see a little red on my right temple-hopefully not an infection starting; it reminds me of when my facial paralysis started and didn’t end for 18 months from infection we couldn’t get under control.  Yesterday I spoke with Mayo Clinic to confirm my appointment with Dr. Lettieri on Wednesday. I’m told to not move a lot, so rest in bed.

In August it would have been 2 years since my last surgery, I was so excited to announce that to Dr. Lettieri–little pooper told me he needed to ‘fix my face’….”Excuse me?” Actually it wasn’t about ‘fixing’ my face, it was more about eliminating some scar tissue that looked similar to what a mass looks like when seen on an X-Ray;  and then while he had my face peeled off decided he would go ahead and try to ‘fix my face’  Everyone knows I love Dr. Lettieri he is looking after me the best way he knows how to-as a perfectionist Trauma surgeon, if he see’s just one way of helping he won’t quit until he has exhausted every possibility.  So for now I sit and patiently wait until Wednesday.

Monya Bonbon

My Tribe

My Tribe

Ellis is our youngest grandchild almost 7 months old. Haleigh brought me soup and Ellis–he took one look at me and started to cry-remember he is only 7 months old I think he is teething, usually he is joyous and happy with everyone. I couldn’t hold him but seeing his face was enough.
These brothers are Kaitlyn and Brian’s boys, Phoenix and Archer. I didn’t really want them to see me all bandaged up, or worse with the bandage off.  One day I was in the hospital and our little Phoenix who is 3 years old decided to Face Time me I only answered because I thought it was my daughter calling. This was our dialogue ” Phoenix: “Hey Bonbon where are you? Me: “Where is your mom and dad? Phoenix: “Sleeping…Bonbon what is that blood?” (it was my drain) Me: “Uhh, yeah it’s a little blood, Bonbon has a boo boo” Phoenix: “Oh did you get a owie?”  Me: “Yeah just a little one, but the doctor is taking care of it so I can play with you again do you want to play?” Phoenix: “Oh Bonbon thank you, yes we can play…..today can I come to your house?” Me: “I’m not home, I’m staying at the hospital” Phoenix: “Is Papa with you.? Did you get a shot?” Me: “I did get a shot, but I am good now and yes Papa is here. What are you doing today?” We talked for over 30 minutes before it was time to hang up, I dreaded hitting END on my phone.  Yesterday he came to see me, not startled by the bruises or stitches that make their way like a train track from one side of my face to the other. He sat next to me on the bed, told me about leaving on an airplane today, going to see all his cousins and for his grandads birthday.  His animation and excitement are really contagious, he reminds me of Kaitlyn when she was a little girl curious, silly faces and totally in awe of his dad (his hero) as it should be. Archer was not phased at all with how my face looked. When it was time to leave I asked Phoenix to send me a Face Time while he is in Utah if he thinks about it his response “umm…We will have to see” from the mouth of babes
Our only grand daughter Weslie comes from my only son Blake and his darling wife Chloe. Blake brought me an acai bowl, it was a nice break from eating everything from a straw. Weslie is not feeling well so really stayed close to daddy. She did give me a huge roll of the eyes for a good laugh and waved “bye-bye bonbon, I love you” and off they went.
This is Ezra, he is Kayla and Jeremy’s middle son. I was Face Timed with Ezra and Theo.  Ezra was playing with Phoenix at his house and really just wanted to know if I would buy him ‘buzz lightyear’ and ‘woody’ apparently Kayla said everytime he leaves playwing at Phoenix’s house he asks her for them….and her standard answer is “No not today, you need to earn it” then he says “Well Bon bon will get them for me” So basically he was calling to know if I’d get him Woody and Buzz next time I’m in Toys are Us.
Recker is our oldest grandson also from Kayla and Jeremy. The only one I haven’t had immediate contact with is Recker….I have a feeling he would be picking out all the stitches on my face one by one, like he did when I had the nerve removed from my calf to my face.  I couldn’t feel it, but he was protecting me ….. he hates stitches and has picked them off of himself so in his mind if he doesn’t like them then of course Bonbon won’t either.
Theodore is Kayla and Jeremy’s youngest son. Theo did a Face Time with Bonbon and didn’t seem weary or worried about my facial appearance. He just kept saying “I wuv you Bonbon” and smiling the entire time.

It’s been one week today since my surgery with Dr. Lettieri. He has text me several times–people may think that is weird getting text messages from your surgeon, and maybe it is a little. I don’t believe he has the time or capacity to do this with every patient he see’s but I’m blessed he checks in on me on a regular basis. Not only to tell me he needs to do more work on my face (really?) but he is also checking in on my spirits–I adore him. I even tell him “I love you” he’s been with me through half of the surgeries I’ve endured always hopeful always happy to see me. I’m not sure what it is like to have a genius mind working overtime 24/7 but boy am I glad he does–although I think he needs some rest, relaxation and a break. Funny thing is I don’t think that is physically possible for someone who does what he does.

Now that I am home, resting has been really hard for me. I got bored with television and could not concentrate …. or the shows were absolutely lame. I miss my grandchildren, they each bring a different type of joy to my soul.

Seriously? I’m a 55 year old grandmother with 7 beautiful grandchildren each bringing a different level of joy, laughter and respect from me….I don’t want them to grow up, I would like time to stand still, well maybe not this week–it needs to go fast but the faster I heal the sooner I get to play. I promised to teach them how to make my famous sugar cookies. I need to be healed and out of this bed looking normal–well really what is normal? Normal is boring too? I’ve learned so much about having facial paralysis through the eyes of my grandchildren–they never knew me looking any other way so they don’t stare, they don’t judge they just love their Bonbon. People can learn from children, I have unconditional love.

XOXO Monya Bonbon

Surgery 41

Surgery 41

Eric and I drove early Thursday morning to Maricopa Hospital.  My anxiety level was pretty high until Dr. Lettieri showed up. He’s always so reassuring, comforting and confident.  Dr. Lettieri is a genius in his field, he travels around the world teaching new cutting edge techniques and helping the medical world to learn more about properly treating trauma patients. I simply adore him, he is the only person who can come close to understanding what I am feeling. He’s seen a lot of horrific things in his career. Many times I have cried in his office, trying to process all that has happened to me.  From the perspective of a trauma surgeon who deals with  life changing medical situations, I appreciate his straight forward approach with me; I need to hear the truth. The truth is medicine and procedures are constantly changing…when Dr. Barr’s told me my face would never be the same again he was right–it won’t; but being told I would never smile again was far from truth–I defied medical doctors and taught myself to connect my heart with my head awkward as it is I did teach myself to smile.

My husband Eric, who I like to refer to as ‘Frenchie’ has been by my side through each and every surgery-He see’s the tears, he’s heard the sickness, he’s held me in his arms knowing that there are no human words that can possibly explain what I’m feeling. On days when I said I couldn’t face another day he’s never questioned me, his words soothe me when my soul is aching for relief and I’m able to make it through one more night.  We’ve carried a heavy load on our shoulders these past few years, but we also realize we’ve done all we can do–I live with no regrets and know that when my Heavenly Father is ready for me to be released from this earth and live with Him once again it will be a beautiful reunion.

 

 

 

 

Eric kissed my forehead looked me in the eyes and said “I love you, see you in Paris.” Oh how many times this scene has been played out. I gave a half-smile and said “Yes, I’ll be in Porte Jaune meet me there” It took a few needle pokes before my anesthesiologist came in and decided for now on I would need an ultra sound lead catheter, and within a seconds they had the vein they needed. The last thing I remember is saying “Dr. Lettieri I love you” I’m pretty sure it embarrassed him, but I am very grateful being blessed with him as my surgeon is not something I take lightly. He is a world renown trauma surgeon his brain in constant motion, he is teachable which in my opinion is  a very difficult attribute for some surgeons to have.  I love when he tells me he was in another country scrubbing in on a new cutting edge surgery and had me in mind.  Which is how this surgery came to be.
I’m very excited to say the anesthesiologist did an excellent job at keeping me asleep. During this surgery Dr. Lettieri literally cut through my scalp from one side to the other and pulled my face off. Scar tissue was removed, then he took muscle from my head and re-connected it to a nerve in my cheek. In technical terms he did a muscle flap.  While all this slicing and dicing was happening I was eating a crepe with Nutella, Bananas and fresh shaved coconut. Other than that I really can’t remember anything else. I don’t even remember being in recovery. The surgery was long, while Eric waited he said he heard a code for all trauma surgeons to report to the ER to assist a motorcyclist. Soon Dr. Lettieri visited Eric and told him he was leaving me with very well-trained doctors who would finish up the stitching.

 

 

It’s always so strange when I wake from a surgery, where did the time go? Dr. Lettieri told me he would need to shave a portion of my hair off, I immediately put my hand to my head to feel the damage, the right side of my head was numb to the touch and all I could feel was bandages. I asked “Did he shave my head?” His residents assured me he used scissors and cut my hair instead of shaving it. This made me happy because we had discussed if it would be better to shave the entire head or have a partially shaved head-I now have about half an inch of hair cut off all the way across the front part of my head and a drain just under the skin from my right temple up through the hair-line of the top of my head. It’s estimated the drain will stay in place for 2 weeks then will be removed in Dr. Lettieri’s office.  Normally when I am on such heavy dosages of sedation it takes hours or days for me to go pee, but that night I asked Frenchie to help me to the bathroom. I was pleased that I was able to go, but when I stood up I fainted in Eric’s arms. When I came to consciousness  I was being held up by a two male nurses trying to get me back in bed. It was decided a commode would be brought in next to my bed-no walking to the restroom.  It was simply too soon for me to be up and walking and my blood pressure was too low 97/43.
I was not expecting to spend the night, but the internal specialists said my Creatine was at 0.6 and GFR was 22, also I was very low on potassium. I recently started a new regime with supplements that have actually worked miracles on me, so I was very disappointed but then I remembered I was asked to stop taking any supplements 5 days prior to surgery. They told me to continue with my regular medications but because I have the MTHFR gene it proved to me even more that the nutrition I should have been getting from my medicine was not being absorbed as it should be. We spent the next day trying to get those levels up-I drank something that tasted much like chalk but was not allowed to take my supplements, this was frustrating because I knew if I was able to take Prime (a delivery supplement) I’d be able to go home.  This picture was taken the day after surgery, does it hurt…….? It feels like I was hit by a MAC truck.  I told Dr. Lettieri “You sure know how to show a girl a good time” his answer “Oh bruising is normal, we did a lot of work on you” I’m not sure Dr. Lettieri really understands my humor, he is all business. With that being said, don’t judge me on this post, it’s taken me all day to write. I always like to write asap so I don’t forget anything but to be honest I’ve been in a lot of pain writing this, I despise pain medication but know when enough is enough and I need to take it.  I’ll end by saying this, my life has been spared so many times, sometimes we forget in the heat of an argument or when we disagree with other’s that in the blink of an eye everything can change.  I’ve learned to forgive and love with every bit of my heart, I try not to take people for granted even when I feel I have been wronged or hurt, because in my experience tomorrow may not come. XOXO Monya Bonbon
Night Terrors

Night Terrors

The last few nights I have been waking up with horrible nightmares.  I will be going into surgery on Thursday next week, and I am terrified of waking up during surgery.  That last surgery seriously gave me PTSD even more than I already had it.  I thought I was past the smells at Mayo Clinic, but every time I close my eyes to sleep I can smell chemo, and sickness everywhere. Last night I closed my eyes and woke up terrified–just as the nurse placed the anesthesia over my nose and mouth and said “Count back from 10” I heard Dr. Lettieri come into the O.R. turn on his Beatles music and say “Let’s get started” Then he took out the scaple  and started slicing through the skin on my head. I was screaming “STOP, Please STOP I can feel that” but he continued as I felt the blood pour down my face. I heard him say “Shave more of her hair off, it’s in the way” Do they not understand, I am awake I can hear, I can feel, I don’t want them to shave my head….”STOP” it felt like I was screaming but no one was listening. I tried to move my fingers but they were tied to the bed, I tried so hard to open my eyes but realized there were weights on them. I heard one of the nurses say to another nurse”What are you doing this weekend?” “Wait, what? … I don’t care about the weekend, just please be quiet…listen to my thoughts, I’m trying to connect with you….. screw that SHUT UP”

Then it happened, Dr. Lettieri started to peel back the skin on my face, he was muttering about the nerves–the pain was so excruciating I couldn’t make out what he was saying….”Can you see the tear, look at my eyes, these are tears, I’m awake. Dr. Lettieri…please… I know you care about me and would never want me to feel this, but I do….I can feel my skin split apart, and every tug and pull on my skin–it hurts”

The pain and atmosphere were so nasty, I sat straight up in bed sweating profusely, Immediately I touched the right side of my head to see if I still had hair, went to the bathroom and sat on the bathroom floor not crying, but petrified to move. “Oh my gosh, what if that happens to me, what if they really can’t put me out?”

I’m sick to my stomach tonight just thinking about sleeping, I need something to calm me….I do the only thing I know to do and that is go to a private place and pray to Heavenly Father, then have faith in Him to get me through one more night.

XOXO Monya Bonbon

My Name Is Hope

My Name Is Hope

 

Unfortunelty I did not get to go to Porte Jaune Paris yesterday. Eric and I arrived at The Mayo Clinic on time, checked in and soon they called me back. While I prepared myself to be sedated and enjoy a nice bike ride through my favorite happy place I had no idea what lye ahead of me. I was taken into the surgery room and told they would take my blood, spin it in some type of machine I could see in the corner of the room and then they would replace it into the hip bones.  I looked at the doctor and asked “how many times have you done this?” (Dr. Kreymerman taught me to always ask.) The reply I received was “Never, you’re our first, so there will be several other doctors in the room observing.” I could feel anxiety flushing though my body as they began explaining they would be performing this procedure on both hips (bi-lateral) and they would not be using any anesthetic, in other words I would be awake. My brain suddenly became a foggy mess I could hear them talking, but wanted them to be quiet. I turned my head toward them and said “Oh no, I can’t do this while I’m awake” then the doctor explained it wouldn’t be any worse than getting a cortisone shot. I wondered how he knew that if he had never performed this before.

As he began to draw blood from my right arm, the first sting of the needle penetrating my skin and then being shoved into a vein brought me up off the table. I explained to them how hard it is to find good veins on me and that Mayo usually gets a specialist to come in for this part. After 4 sticks, they finally asked for the specialists to come in. I asked them to please stop everything and go get my headphones and phone from Eric so I could try to distract myself with music.  The initial response was—-is she kidding?  I looked at the nurse and begged her to please do this for me, The doctor agreed and off she went to get the music. My hands were tied down so I could not control the music, she put the wireless headphone in my left ear and went to playlists and pushed ‘purchased’ I soon heard music, but not the music I wanted to hear—what was this?  The words were so distracting I could not concentrate the words to the song were ‘Punching Bag’–I asked them to stop once again and change it to my playlist called Church Music.

Instantly  I could hear the beautiful music from our dear friend Clyde Bawden and began to relax. I tried to close my eyes, but the right eye would not close–I asked them to please close it for me and they did continually throughout the procedure. My veins continued to roll, the anesthesiologist poked and prodded until she finally found one vein they were able to suck all the blood out of, however it was not quite enough. A tear rolled down my cheek, as they apologized and asked if they could try on the left arm…at this point I thought “Do I have a choice?” After 10 pokes they were finally able to get more blood still not an adequate amount but we proceeded. I remember looking at all the doctors eyes, their mouths were covered with masks–as the tear rolled one of the doctors winked at me as if to say “I’m sorry”

“Try to relax, while we spin your blood.” The nurse rubbed my arms and held my hand while I  listened to a beautiful song I’d never heard before. I concentrated on the words as I watched all the physicians gather around the ‘blood spinning machine’ “Hello my name is hope, I have made many smile, they’ve tried to keep me silent, they’ve sent rain and they’ve sent fire, but I’m strong and enduring, I am eternal” Tears rolled down my cheeks as the words continued “I know it’s hard to believe in something when it cannot be seen, but my name is Hope and if you are listening then you will hear me singing, I’ve held the hands of children and gave them reason to survive and I can feel their afflictions, please let me come in…my name is Hope and I spring eternal.”  I opened my eyes as the song ended to see the physicians taking my blood out of the spinner and into a syringe–I was asked to lye on my left side. I will never forget what happened next, it was explained they were going to now insert the blood and he did, but not without me screaming in pain–“relax–relax” was all I could hear–that my friends was impossible to do.

The incredible pain I felt as the needle penetrated my bones made my body shake, it reminded me of what my body did when the nerve in my face popped.  “Hold on we are almost done” as the depth of the needle made it to it’s final resting spot I screamed out in pain and asked them to stop, but it was too late the pain quickly and sharply made it to my ankle –it wasn’t going away, I shoved the sheet into my mouth and screamed by now I was sobbing the tears were not going to stop as I hid my head in the pillow. The Doctor moved to the other side of the table rubbed my arm and said “I’m right here” I immediately said with quivering lips “That’s what I’m afraid of” “Well she still has her wit” they all laughed as they turned me over to proceed on the left hip.  I told them I needed to breath for a moment before we started–I asked the nurse to please put my ear bud back in my ear and find the song “Be Still, My Soul” I once again closed my eye and she closed my right eye as they began to force the needle in through the bone–I yelled “I can’t do this”  “We are almost done, just relax”  That word RELAX….what does that even mean….relax……?   seriously…..? I was supposed to be in Porte Jaune picking wild berries, eating a crepe with Nutella, bananas and fresh shredded coconut.  I wanted Eric in the room, I knew he would understand, he could calm me- The Doctor announced “Ok, we are all done”…. Was  I supposed to say “great, thank you it’s been fun?” No, I hid my face in the pillow and cried uncontrollably, weeping, my body began to shake as my crying became louder and stronger the nurse rubbed my back–“I can’t breath….can you get my husband?” Within minutes they had me sit up and move into a wheelchair so they could take me to recovery. The transition was excruciating, since I was the first patient to ever have this surgery they were not prepared with pain medicine. I believe they thought this was going to be much easer than it was.  I was still crying hard when they brought Eric back, I was embarrassed and I think Eric was a little shocked to see me in this condition.

I’ve been home a couple days now, I have the walker manipulation down–Up to the bathroom and right back down on the sofa.  Nothing is permanent, not even pain.

 

XOXO Monya Bonbon

Porte Jaune Here I Come

Porte Jaune Here I Come

Tomorrow I enter Mayo Clinic surgery center, close my eyes and go to my happy place, Porte Jaune Paris.  This surgery is going to be regenerating some of my own tissue from bone marrow into my hip, hopefully alleviating pain and giving me more mobility. It’s a fairly new procedure, insurance does not cover it, but I rather try it on my right hip before going for a hip replacement. If this is successful I will have the left hip done. I’ll be using a walker for awhile (don’t laugh) I cannot have any weight on that hip, but the good news is the recovery is only days instead of months.

I’ve actually gone a year and a half without a surgery this will be #41. Dr. Freeman is my pain doctor, I love teasing him-but the truth is he has really helped me for over 5 years now to relieve the pain with cortisone shots; it’s just time to try something new.  The Lord has blessed me so much, little by little He’s helped me understand the reason I have gone through so much.  I needed to be refined, He wanted me to get out of my comfort zone and serve other’s.  I used to look in the mirror and wish I could go back to where I once was, I wanted my smile back (I still do at times) I sometimes close my eyes and pray for the Lord to allow me to feel again, I mean really feel my life is worth all of this. It takes my breath away many times.  Then I’ll meet someone who needs help more than I do and I have to remind my heart to beat again, I look into the eyes of a child who needs food, clothes or a hug and realize I have a second chance to make my life mean something, I really want to leave this life having made a difference.

So for tomorrow I will get stuck with needles once again, then slowly drift off to Porte Jaune riding my bike, picking wild berries and watching the beautiful white swans drifting through the waters. When I wake Eric will be at my side like he always is.  Then I get to start all over again learning to walk with a healthy hip-time and patience will tell. I’m grateful for modern medicine and the opportunity to try regenerative procedures that allow me to heal quicker.

XOXO Monya Bonbon