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Garbett cover front final Mar 14When I heard the gut-wrenching words “very rare cancer” and “one in a million” used to describe a type of cancer I had never heard of, it felt as if all the breath had been sucked out of my lungs. I was immediately launched into a place I’d never dreamed I would be. Like most people dealing with life-threatening illness, the immediate, blood-draining fear can be enormous, and the accompanying “what-ifs” overwhelming. I gave The Fear time to do its thing, and then used it to motivate me and push me forward to do research, to gain knowledge, and to hopefully make appropriate choices for the unwelcome challenges, obstacles, and burdens that were directly in my path. I was determined not to let fear or anything else consume me or stop me from taking my life back. Instead, I chose to accept them as a necessary part of the long, painful journey I faced.

Cancer caused me to look at life differently, to see the bigger picture; to realize that life is often full of maze-like paths, filled with twists, turns, and detours which can often complicate and change our lives in an instant. I discovered that even when hurdles are harsh, when our plight seems unbearable, when we are exhausted and think we can’t endure much more; we can consciously seize upon our hardships as opportunities for self-examination and growth. They can become a time to reflect on and appreciate the simple things which we have been blessed with. And it’s those positives that give us strength and can help us through whatever challenges life presents. I realized we all have the ability to regain control and fight to help ourselves through whatever lies ahead. Confronting Chordoma Cancer focuses on the power of the human spirit and hope.

Click here to watch my story with my Johns Hopkins physicians.

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Forward

Susan Garbett is neither unfamiliar with the medical system nor a newcomer to being diagnosed with various ailments. Still, this did not prepare her for being diagnosed with a rare tumor—a tumor she had never heard of, a tumor some of her doctors were unfamiliar with and a tumor few had experience treating.

She takes us through this frightening and confusing journey from the perspective of a patient. Her journey highlights her perseverance and demonstrates the wonderful support she receives from her family, friends, other patients and, most of all, her loving husband. Although her story is about her experience with a chordoma, this is not a story about a specific rare tumor. It is the story of courage and grit in the face of an unknown challenger. This is a story of empowerment through self-reliance and knowledge.

Jean-Paul Wolinsky, M.D.
Associate Professor of Neurosurgery and Oncology
Clinical Director of the Neurosurgery Spine Program
Johns Hopkins University/Hospital

Jean-Paul Wolinsky M.D

Chapter One

This is a Big Deal

Scanning the neatly arranged rows of multi-patterned chairs in this massive waiting room, I spotted my husband, Chuck, walking towards me.

“How was it?” he asked.

“An EMG [electromyography] has never been my favorite test. The electrode part isn’t bad, but when they insert those small needles into your muscles, it’s really hard to relax. They have a different concept of what small is. It’s painful and I’m just glad it’s over.”

“Dr. Calamia’s secretary just called me and asked us to come to his office as soon as you were finished,” Chuck said.

“He must want to get out of Dodge early and get a head start on the Fourth of July holiday weekend,” I replied.

We were kept waiting for only a few minutes before Dr. Calamia, wearing a pin-striped shirt and sporting a bright royal-blue patterned bow tie, entered the room. He greeted us with a friendly smile and handshake, and promptly proceeded to scan his computer, apparently searching for my test and lab results. I was so impressed with the efficiency of the Mayo Clinic here in Jacksonville, Florida. We had always heard great things about Mayo, but it was only after experiencing its way of doing things for a few days that we realized their competency went way beyond our expectations.

“Your blood work and bone scan both look fine,” he said. “Radiology found something on your MRI [magnetic resonance imaging] that we need to address.” Without any hesitation and looking directly at us, he said, “Our radiology team discovered a sacral chordoma rising from the sacrum about the size of a baseball.”

“A what?” I said. “Never heard of it. How do you spell it?” My mind was spinning, but I knew Chuck was taking notes. We serve as each other’s recording secretary at most medical appointments. Using a calm and reassuring tone, Dr. Calamia explained that a sacral chordoma is a rare, malignant boney tumor in the sacral area of the spine.

Stunned, it took a minute or so before I could get a word out. “I heard malignant and rare. I understand malignant, but what are you talking about when you say rare?”

“One in a million,” Dr. Calamia responded.

I didn’t speak. His words sucked the air out of my lungs. I felt tightness in my throat. As I tried to digest Dr. Calamia’s words, I felt Chuck’s hand close over mine. Silence filled the room. As my heart sank in this small office, I had a sense Chuck’s heart was sinking in unison with mine. My mind began to race. How can this be happening? This is unbelievable. I came to the Mayo Clinic for a routine rheumatology evaluation for lupus and a few other autoimmune conditions, and now this doctor is telling me I have a rare cancer. And here I thought he wanted to see us early so he could get a head start on his holiday vacation.

I took a deep breath and finally had the courage to turn and face Chuck. As I leaned my head on his shoulder, I heard him whisper in my ear, “We’ll get through this.” Dr. Calamia didn’t rush us. His patient understanding gave us time to absorb what he had just told us. This merciful pause was exactly what we needed.

“Of course, we can’t be absolutely sure until we have a biopsy confirming our diagnosis,” he said, “but your scan was thoroughly analyzed by some of the top radiologists in the country. I have already made an appointment for you to see Dr. Mary O’Connor, an orthopedic oncologist familiar with chordomas tomorrow at five o’clock. Your test results and my notes are already in the Mayo computer system, so she will be able to review your file before you arrive. Do you have any questions?” What? I wanted to scream. Of course I have questions. Lots of them, but having never heard of this type of tumor, I didn’t even know what to ask. I felt a bit stupid and at a loss for words, which, as Chuck will attest to, is a rare occurrence.

After a long spell, I began to speak. “Would this explain the coccyx pain that I’ve suffered with for several years? Could this have been caused from having fractured my tailbone while riding the log flume at Hershey Amusement Park five consecutive times with our grandson?”

“It didn’t help the situation any, but it certainly didn’t cause it,” Dr. Calamia replied. A chordoma is a cancer that develops from remnants of embryonic notochord in the skull-base or spine.”

“Are you saying that I was born with this?” I asked.

“Yes,” he replied.

My thoughts became mush. This is mind-boggling! I knew I didn’t fully comprehend all that was being said. The only thing I could think of was that I’m glad my father isn’t alive, because he would be beside himself if he thought for a moment I could have possibly inherited this condition from him.

“Dr. O’Connor will be able to address your questions more adequately when you see her tomorrow,” Dr. Calamia said.

Chuck and I stood, exchanged pleasantries and thanked Dr. Calamia. He told us we could stay in this room as we try to regain our composure if we wanted to, since no other patients were scheduled today. As the door closed behind him, Chuck took me in his arms. Feeling his strength supporting me gave me the courage to pull away slightly and to look him in the eye. His vivid baby blues were teary-eyed, and I began to feel wet streaks running down my cheeks. Chuck gently brushed and kissed them away.

“Let’s get out of here,” I said…

Chapter Two

Decisions…Decisions…Decisions

The Fourth of July weekend crept by ever so slowly. The reality of my latest medical news, along with the anxiety of the upcoming biopsy, forced us to cancel plans with friends. Going would mean wearing a false smile and listening to everyone’s gay chatter. We both knew we would have a hard time keeping up a pretense that it was “business as usual.” For us, nothing could be further from the truth. We chose instead to spend a quiet weekend together without all the hoopla and expectations that Independence Day usually brings.

Chuck and I were each trying to be strong for one another, carefully choosing our words, not wanting to cause any further upset or distress. At times I found the silence between us comforting, the unspoken word calming, as we sat together listening to Andrea Bocelli fill our home with light operatic beauty.

This serenity was certainly needed but was short-lived. It wasn’t enough to overcome the turmoil and uncertainty within. After the initial shock, the enormity of this complicated surgery and the possible outcomes were beginning to sink in. I realized that, even if the surgical team was able to remove the tumor, there was a good possibility I would be left without normal bowel and/or bladder function.

Solace and a sense of inner peace came when I started saying the Modeh Ani, a Hebrew prayer that is said upon arising each morning. Over the years I had gotten away from reciting it, too eager to start my day, too busy to focus on its meaning.

I offer thanks to You, living and eternal King,

for You have restored my soul within me:

Your faithfulness is great.

Now, faced with such uncertainty and so many unanswered questions, this simple prayer spoke to me, and every morning it became my first conscious act, thanking God for the gift of life.

I knew the phone calls to our children would be difficult. I took time to gather my thoughts, trying to find the right words to ease the shock of what I was about to tell them. I wrote a brief crib sheet with a few key points that I wanted to get across. It was a good exercise for me, although I knew prolonging the inevitable was making it harder. Even though my two sons and Chuck’s daughter and son were all adults, my maternal instincts made me want to protect them. I thought about contacting them through Skype, but decided against the idea because I wasn’t sure if I could keep my emotions under control. I wished I could make a conference call so I would only have to say this once.

Their loving support was overwhelming, at times making it harder for me to hold it together. They listened intently and said all the right things. “We’re here for you, Mom. You’ll get through this,” Scott said in an unusually subdued tone. Craig kept emphasizing, “I’ll be there no matter where you have the surgery, Mom. Try not to worry.”

Chuck called his children to ease the burden on me. I watched him as he sat on a chair on our lanai with his back toward me. Later, he told me Chris and Buddy expressed similar sentiments. Buddy, who sells orthopedic appliances and goes into the operating room with the orthopedists in Virginia, said he would ask the “docs” he knew and do some research on his own to find surgeons most familiar with chordomas.

I had a gut feeling that after each conversation, all of them would be on their laptop, Blackberry, or iPhone googling chordoma to find out more information. We asked everyone to keep this information confidential until after the biopsy actually confirmed the diagnosis. No sense getting everyone upset until the diagnosis was definitely confirmed. In my heart of hearts I knew the diagnosis was correct. I remembered Mayor Rudy Giuliani’s accusatory words after the 1993 World Trade Center bombing when he said, “If it looks like a bomb, smells like a bomb, it must be a bomb!” What made me think of that?

Over the weekend we diligently continued to research the Doctor’s Database on The Chordoma Foundation website. We developed a list of medical specialists, sorted by location and fields of expertise, including skull base and spine neurosurgeons, otolaryngologist/ENT surgeons, orthopedic surgeons, and medical and radiation oncologists. This list provided the most valuable information for us to review. Although our focus was on practicing physicians at the Mayo Clinic in Rochester and at Johns Hopkins Hospital in Baltimore, we didn’t limit our search to just those two hospitals. We were willing to travel anywhere in the United States to consult with the best specialist. After we compiled the initial list, we researched each doctor’s credentials on their particular hospital’s website to obtain more information. Our search was time-consuming, but worth the effort.

Having lived in Baltimore most of my life, it was only natural for us to think of Johns Hopkins first. It was where many of my current doctors practiced, and where I went for most of my tests, procedures, and hospital admissions. Although we were novices at this, we liked the description we found about the Johns Hopkins Spine Center:

The Spine Center at Johns Hopkins has vast experience with sacral chordomas, which has allowed us to develop a comprehensive philosophy for their treatment. Because these tumors metastasize, the first operative intervention provides the best chance for cure and control of the tumor. In addition, surgical en-bloc resection provides overall increased survival and tumor control. Because chordomas are fairly rare, success is achieved best through a team approach to treatment by a highly experienced group of physicians. Treatment involves preoperative planning, surgical resection, and postoperative therapy…

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Reviews

Being diagnosed with chordoma inevitably launches patients and their families into a series of life-changing experiences that few among the uninitiated can imagine. Confronting Chordoma Cancer: An Uncommon Journey provides one patient’s vivid, firsthand account of navigating the unfamiliar territory of this new diagnosis; a story to which many fellow survivors will relate, and which provides a rare window into the types of challenges, questions, disappointments and victories that may lie ahead for those who are just embarking on their own journey with chordoma.

 Chordoma Foundation

In capturing the challenges, emotions and uncertainties of a rare cancer diagnosis, Ms. Garbett gives an accurate depiction of the journey through cutting edge treatment and recovery. Anyone who has cancer or knows someone with cancer will benefit from the support and hope her story brings.

Michelle Clarke, M.D.
Mayo Clinic-Rochester

 As a nurse for almost twenty years, I have met patients with the rarest of rare illnesses that makes one realize not only how alone we are, but how illness can magnify that feeling exponentially. Susan candidly writes about her sacral chordoma journey— how it took her from the comforts of her home to distant parts of the country and the challenges she faced finding the right medical team. Her rich memorable observations, along with the pleasant surprises she found in unexpected places, leave the reader and others facing difficult diagnoses with hope.

 

Kathleen Selleck,
R.N.
Massachusetts General Hospital

 

As a breast cancer survivor, I could relate to having  to face an onslaught of challenges and decisions all at once… Susan’s story illustrates the many common challenges patients face when they receive a life-altering diagnosis. She takes the reader along as a passenger in the uncharted land, as she reveals the many bumps, dips, twists, blind curves, and forks encountered on the road to survival. Susan shows us that in the midst of our greatest pain and sorrow, we sometimes discover our greatest triumphs and joy.

 

Angela Long
Breast Investigators

 

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Resources

Chordoma Foundation:
http://www.chordomafoundation.org/

Neurosurgical Spine Center at Johns Hopkins Hospital
http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/spine/index.html

The Massachusetts General Hospital Francis H. Burr Proton Therapy Center
http://www.massgeneral.org/radiationoncology/BurrProtonCenter.aspx

American Cancer Society
http://www.cancer.org/

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