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Relay for Life

12/14/2015

On December 12, 2012, at noon, 12/12/12/at 12:00, I learned that the cancer I had already been battling for a year, had spread "everywhere:" liver, lungs, bone, kidneys, etc. It was this event that kicked me in the backside and made me write Dillie's book, and tell her and my stories. Although, I am still three years later in treatment, my cancer journey continues to be intertwined with Dillie's.

I am ready to not write another word about cancer, because it does not define me and my life is blessed daily by animals and animal lovers. But the three year anniversary this week of that fateful day did give me pause to stop and reflect on my path. Then, just yesterday, a Dillie fan that came to the house to meet her asked me if I could publish the speech I gave at a local cancer "Relay for Life." And as things always seem to happen lately, just last night as I put away an old book, my handwritten speech from this event tumbled out. This was definitely a "God Is Trying to Tell You Something" moment, even without the cast of The Color Purple. Who am I to defy the will of God, and He time and time again makes that will known to me in the most obvious but cheeky ways.

So, without further adieu, here is the text to the speech I was so honored to be asked to give at the Jackson Relay for Life in 2015. And I PROMISE my next blog with have NOTHING to do with cancer!!! MRB

RELAY FOR LIFE

Thank you for your invitation. Hello, my name is Dr. Melanie Butera, but you probably better know me as “that crazy person that has the deer that lives in her house.”

Yes, I am “Dillie’s Mom.”   Dillie the Deer that became an international webacm/internet star after appearing on TV and having over 1 million fans.

As you can tell by my bald head, I am also a cancer patient. No, this isn’t a fashion statement. I am not getting ready to pose for the Sports Illustrated Uncle Fester Edition.

This is my third year of my cancer journey. And I do see this as a journey, and a journey I was supposed to have made. It is a journey that has taken me to places I have never been before. I don’t just mean under the linear accelerator in a radiation oncology room or my pink chemo chair, but I mean places in my soul and my faith that I have never examined before, and needed to.

It’s a journey that has given me the absolute privilege of meeting the most incredible spirits in the world: wonderful, compassionate doctors, nurses, and staff-- but also the amazing fellow passengers on my journey that travel with me with such courage and determination. Once you’re on board this flight, the other passengers welcome you with open arms, and help you navigate the bumps and turns. And there’s a lot of those.

I meet my fellow passengers everywhere I go. We don’t have a secret handshake, but we’re easy to tell apart. We’re the ones with no eyebrows and legs so smooth we could do a Nair commercial. But we’re also those that are grateful for every day,    for every hug from our loved ones. We are survivors together. We are strong survivors, and we are are survivor strong.

Cancer thinks it is soooo powerful. But it’s not.    Oh, he calls himself the Tumornator and says “I’ll be back!” but he’s just Don Knotts in an Arnold Schwarzenegger costume.    He’s weak. He can only hurt our bodies, that’s all. He’s not the Terminator- he’s the shakiest gun in the west!

He cannot take our souls. He cannot end the love we have for our friends and families. He cannot destroy our faith, He only makes that stronger. He cannot undo the impact we have made with out lives.

These things stand forever.

I know that the Tumornator may shorten my life, but he cannot make me ungrateful for every day I have. He cannot take that away from me.

My biggest fear when I was first diagnosed was not that I might die. We all die. No, my fear was that my life hadn’t mattered, that POOF, I would be gone, and no one would even know I had been here. My diagnosis prompted me to get off my backside and finish the book I had started about my deer Dillie. Seeing what a huge impact this little throwaway life had to people all over the world, from Australia to Siberia, I realized my life did have impact, that we all make a dent in the universe. This revelation–this epiphany– gave me the strength I needed to continue the journey I am on.

Those of you here today tat have already taken the flight I am on, God bless you all. You are indeed survivor strong.

Those of you here today representing a loved one that wasn’t able to complete the journey, on their behalf, I boldly thank you. By honoring them, remembering them, missing them, loving them, you have refused to let the Tunornator win. He’s crashing today in front of our eyes in a big ball of flaming mutated chromosomes.

Your love is more powerful than cancer.

Together, we tell the Tumornator to go back to Hell. Say it with me: Hasta la vista, Baby!

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Donkey Ride

12/7/2015

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This is a chapter that I wrote for the manuscript "Dillie the Deer" that was edited and condensed and does not appear as a stand alone chapter. It takes place in January, 2013, after I had just started my first year of chemotherapy for stage four cancer. Prior to this chapter, I had explained that my friend Sandy and I together had been taking a medical journey together, her with a debilitating neurologic mystery disease and me with endometrial cancer.    MRB

Donkey Ride

One of the movies I had watched during that first chemo was Young Frankenstein. So, of course, that night I heard from my friend Sandy. Her own health battle had taken a dramatic if not miraculous turn.

Right after she had told me about her “Abby Normal” brain, I had relayed her symptoms to Dillie friends on Facebook. One of them, Wendy, wrote me and said that her teenage daughter had a similarly frustrating experience with a similar illness. She had seen specialists all over the world, and none of them had any answers. Some of them had arrogantly suggested, as Sandy’s neurologist had, that she was making up her symptoms.

There can be no more disheartening feeling in the world than suffering from a serious illness and having a trusted-- but ignorant-- doctor accuse the patient of “faking it.’ After over a year of her debilitating undiagnosed illness, Wendy’s daughter was watching a TV home makeover show, one where the TV remodeling crew gives a fresh home to someone enduring a difficulty. The subject of this show suffered from a disease known as “Chiari Syndrome.” Despite it’s romantic-sounding Italian name, Chiari is a very serious problem caused when the brainstems sags into the spinal column. The intense pressure on the brainstem triggers a variety of seemingly disjointed signs due to the various nerve centers in that region. The brainstem contains centers for breathing, blood pressure, nausea, balance, heart rate, and pain, and its surrounding cranial nerves control swallowing, tongue movement (and therefore speech), and the autonomic nervous system.

As the subject of the show explained her symptoms, Wendy’s daughter shouted: “Mom!! That’s what I have!”

Sure enough, after consulting a Chiari specialist and having a special type of MRI study done, Wendy’s daughter finally, finally got her diagnosis and treatment began.

I was familiar with Chiari in dogs. My practice associate Stacy had a Cavalier King Charles Spaniel that was diagnosed with it via MRI at Ohio State.   Sandy’s complex array of neurologic signs all revolved around the brainstem. Even the weird intermittent French accent that Dr. Gi Gadois had nonchalantly brushed aside could be explained by injury to the hypoglossal cranial nerve, located right along the brainstem.   Furthermore, Sandy had Ehrler Danlos syndrome, a connective tissue disorder often associated with Chiari. Ehler-Danlos allows extreme flexibility and contributed to Sandy’s advanced dancing skills, but it could also cause that brainstem to sag or the spinal cord to crimp. She very likely could have Chiari, but not one of her multitude of neurologists at three different hospitals ever mentioned the possibility nor conducted the necessary scans to diagnose it.   Instead, they arrogantly accused her of “faking it.” How is it possible that a sixteen year old girl watching a TV show and a veterinarian at Ohio State could diagnose this syndrome, but a board certified neurologist could not?

I told Sandy that she just needed a better doctor. No, not just a better doctor: THE BEST doctor. The Luciano Pavarotti of doctors. I had also told her that I was making her an honorary Catholic so Padre Pio could guide her to a cure.

Just two weeks later, Sandy called me, excited. She was in town and needed to talk to me. We met the next day for breakfast.

She and her husband Gary bounced into the restaurant, full of joy. She had found her miracle doctor. Two days ago, Gary had driven her all the way from Virginia Beach. She had to lay down in the back seat for the whole trip. If she tried to sit up, she would pass out.

She had come back to Ohio to see a special doctor: Dr. Issam Nemeh.

Dr. Nemeh is a cardiologist that practices in the Cleveland area that has an international reputation as a gifted spiritual healer. Sandy had met him when she had worked on a documentary on faith healers for the Christian television station where she worked.   Exasperated, ill, and convinced she was going to die before any doctor could help her, she decided to see Dr. Nemeh for advice.

“Melanie,” she told me, “when I walked into his office, Luciano Pavarotti was on the loud speaker. And there was a picture of Padre Pio hanging over his desk. I knew I was in the right place.”

What eluded all those board-certified neurologists was obvious to Il Maestro Dr. Nemeh. He pointed out that she had a mild but noticeable curvature in the bones of her neck. Technically, she did not have Chiari, but the compression on the brainstem and effects were the same. What she had was known as “kyphosis.” In layman’s terms, she had a hunchback.

“Just call me ‘Aye-gor’,” she said in character, with a laugh, recalling our “Young Frankenstein” motif.

Dr. Nemeh had not only diagnosed her, but by performing spinal manipulation and electro-acupuncture, he had corrected her problem for the time being.

“Look!” she said. “I can stand without passing out! I can even dance.”

To demonstrate, she and her husband, as much of a vivacious bon vivant as she, stood and performed an impromptu tango, right there in our local Cracker Barrel.

I had never heard of Dr. Nemeh before that day, but I was amazed and grateful for my friend’s cure. Sandy described him as a modest man of God,not like the uber-flamboyant so-called faith healers of televangelism infamy.   She urged me to go to one of his prayer sessions he led each Sunday.

At that time, my cancer was supposedly gone. I didn’t think I would need to ever seek the extra healing power of anyone. Just a few months later, however, when I had discovered the unceremonious spread of the cancer, I heard the Pavarotti of doctor’s name again.

My mother called me one day and said: “ I want you to go to this prayer service with me. There’s going to be a doctor there with great healing powers. His name is Dr. Nemeh.”

I obliged her because, frankly, she is my mother and her superpower is to bend the will of her offspring so they cannot ever tell her no, but also because I could not afford to refuse to do anything that might lessen my hope I would survive.

That following weekend, Mom and I waited among hundreds of people to see Dr. Nemeh. he was just as my friend Sandy had said: unassuming, meek, humble. He was the very antithesis of the psuedo-healers flapping their toupees while shouting “Be gone, Satan!”over the infirmed on TV.

This was not a show, it was a service. There were no TV cameras, bands playing, or speaking in tongues.   A simple, quiet man timidly approached the microphone and told us he was Dr. Nemeh.   He was a classically trained cardiologist, he explained, but throughout his whole life he had known the healing power of the Holy Spirit. He knew that there was more to medicine than the quality of the doctor and the drugs. He had witnessed miracles, but he also knew some patients would not be cured, “at least,” he said, “in this realm.”

Sometimes, he told us, the cure is not to the physical body, but to the spirit.

His wife then took the microphone. She was a more outgoing and natural public speaker than her husband of thirty years. She told us she had witnessed many healing miracles herself, but was at a loss to explain her husband’s gift. She asked him one day: “How do I explain to people what you do?”

He took a picture off the wall of Christ riding to Bethlehem on a donkey. This is the classic depiction of Palm Sunday, and Jesus’ triumphant return to Jerusalem. A crowd of admirers surround Jesus as he rides on a donkey into town, fulfilling a prophecy and bringing hope to His people.

Pointing to the picture, Dr. Nemeh explained himself to his wife: “I am the one closest to Jesus in this picture.”

His wife was puzzled. “This little girl? The old man?”

“No,” Dr. Nemeh answered. “I am the donkey. I am bringing Jesus to the people.”

After a long wait, my mother and I received our blessing from Dr. Nemeh. I have met people before in been in places where the power of the Holy Spirit was as obvious as the North Star. When my mother and I had stood in front of the Shroud of Turin in Torino, Italy, I had felt that type of presence. When we saw Mother Theresa speak at a local college a few years before she died, we felt it then, too. This man, this simple donkey of Christ, had that blessed aura. When he touched my mother, she fainted.

After that powerful service, my mother was determined for me to see Dr. Nemeh as a patient. Just a few days later, she called me to tell me she had made an appointment, but there was a six week waiting list. I was content with that, but she wanted us to go sooner. I don’t know what spirit was guiding her then, but she called back a few minutes later.

“I called them back,” she told me. “I told them about Sandy, that we knew Sandy. He’s going to see you tomorrow. “

The very next evening, therefore, with my friend Sandy’s unknowingly facilitating the appointment, I saw Dr. Nemeh in his medical office. Just as Sandy had described, Padre Pio hung above his desk. This was the same photograph of the Padre with his bandaged hands soaked with blood from his stigmata that I had purchased as a medallion over a decade ago while in Turin to see the shroud. On the loudspeaker was a classical radio show playing opera, and while we were waiting in the lobby, as I completely knew would happen, the announcer introduced Che Gellida Manina, sung by Pavarotti.

I had to smile. Sandy couldn’t have been more with us than if Marty Feldman himself had been in the lobby with Hans Delbruck’s brain in a jar.

How many doctors had I seen at this point in my journey? At least a dozen. I couldn’t even really count, especially when I thought about all the doctors I only saw for a second during one procedure or the other, and didn’t even know their names till I received their bills. Not one of them was like Dr. Nemeh.

Not one of them even had an exam room like him. Instead of the usual anatomic charts and public service posters, his walls housed pictures of saints and the Pieta. At the far end of the room, right across from the exam chair, was a statue of the Madonna. If there had been a stained glass rose window and an organ, I would have thought I was in mass.

My visit to Dr. Nemeh was three days after my first chemo, and the chemo demons were just starting to move in. The fatigue, queasiness, and pain were just starting. They would intensify over the next week, and then gradually subside. Just when my energy started to come back, and food no longer tasted like a copper pipe, they would hit me again.

That night, I was feeling pretty shaky and sick, but from the moment Dr. Nemeh came in to the exam room, I felt calm and tranquil, like I had just been dosed with some IV “Twilight.” He introduced himself, as if any patient he saw didn’t already know who he was.

Up close, he was the same quiet unassuming man I had met at the prayer service, but his personal presence was even more powerful. He radiated kindness and love.

He asked about my cancer and completed his medical exam. They he began and electro-acupucnture with a set of electric leads and a MacBook Pro.

I knew he was a Mac guy! God wouldn’t waste his time bestowing healing powers on a Windows user!

As he conducted the acupuncture, I talked to him about the conflict I had as a scientist believing completely in the improbable existence of a God. Had he ever had any doubts?

“No, never,” he answered quietly. “I have felt HIs presence. I have seen His work. He is very real.”

When he had finished his procedure, he gave me the best medicine I received during my entire cancer treatment: hope.

“You are going to be fine,” he said. “The angels around you are there to help you. They aren’t taking you home.”

I did not receive, not did I expect, a miracle cure from Dr. Nemeh. however, he was a faith healer to me in the most literal sense–he healed my broken faith.

Every other doctor I had met to that point had done nothing but suffocate hope. They all pussyfooted around the truth, keeping the most dire statistics and news away from me as best they could. When they spoke to me, however, they all had the look that I had when confronted with a terminally ill twenty-one year old cat with a body temperature ten degrees below normal and unable to lift its head off the exam table whose pet parent furtively asks: “He’s going to be all right, isn’t he, doc?”

Dr. Nemeh, who viewed himself as no more than a donkey-servant of the Lord, was the very first doctor to give me the hope I needed to fight the battle of my life.

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