Moments in Sarcoma

Imagine a collection of moments from people around the world who have dealt with all kinds of sarcomas. What insights would surface? What would we learn?

In February 2009, we invited people who have been affected by sarcoma to share a moment with us in writing. We received more than 140 submissions from around the world, and we were touched by experiences of joy, laughter, love, grief, hope and determination. One of these special Moments in Sarcoma was published every day from April 6 through August 6, 2009.

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A Moment in Sarcoma from Di

Milton Keynes, United Kingdom

It’s January 2009, and I’m walking along the Euston Road in London to my yearly check up at University College Hospital’s sarcoma clinic. I’m thinking back nearly seven years to a moment in 2002 when I was in this same place.

An ambulance hadn’t arrived to bring me back to my ward at UCH Middlesex from a pre-chemo hearing check in another part of the city. I’d had to haul myself out of my wheelchair and into a cab. This had proved difficult because I’d just had an above knee amputation for the leiomyosarcoma in my tibia. I sat looking out at the crowded pavement where I’d often walked on my way from Euston Station. The cab stopped in the traffic in front of a construction site, and I realised that the building beginning to rise through the scaffolding was the new University College Hospital, which would eventually house the Middlesex hospital’s oncology department.

In that moment I was sure I would not live long enough to see the hospital completed, to be treated there or ever again be a part of the crowd walking freely along the street. That was one of my lowest moments.

Each year now when I walk from Euston station to UCH on my brilliant high tech leg, I remember that moment and feel a huge gratitude to every one of the people who helped me get to this point, especially the oncologist at my local hospital who swiftly referred me to UCH’s sarcoma specialists for diagnosis and treatment.

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Please support International Sarcoma Awareness Week: July 18-26, 2009.

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A Moment in Sarcoma from Todd

Minneapolis, Minnesota

CT scans only take a few minutes. Except for the first one after you’ve been told you have cancer. It lasts for weeks.

Twenty-six years old. Married. College-educated. Gainfully employed. Fortunate to have a rather blessed life. And now faced with the uncertainty of how much longer that life would continue and how much “living” it would be able to do.

Scared. Sad. Frustrated. Questioning. Wanting something – anything – to lean on at that moment to know this can be overcome. That things will be okay.

I’m not – or should I say, “wasn’t” – a very spiritual or religious person. But moments like this in life give way to needing a “higher answer.”

With my heart racing and nerves on end, I continued to feign a smile and calmly chat with the CT tech, trying not to show the emotion that was just beneath the surface. I concentrated on not letting my voice crack. On keeping my breathing even. On holding back tears. And then I silently prayed.

To whoever would listen.

“Please send me a sign,” I started. “Any sign. Something to let me know that I will be all right. That I can beat this. That this can be overcome.”

“I NEED this. I need this sign.” For the first time since I lay down on the CT table, I became aware of the light sound of a radio playing in the “control area” in the adjacent room. It had been on the entire time, but it was just now that my ears tuned in. An unknown song faded out. A new one faded in.

“Here comes the sun. Do do do do. Here comes the sun. And I say, it’s all right.”

Goose bumps. A smile. And some soft tears.

Right then I knew. It would be all right.

——

Please support International Sarcoma Awareness Week: July 18-26, 2009.

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A Moment in Sarcoma from Renée

Noblesville, Indiana

As part of her treatment for Ewing’s Sarcoma of the brain, my then six-year-old daughter Delaney was required to undergo painful G-CSF (Neupogen) injections to help her battered immune system recover from the day after she finished chemotherapy until 0-14 days after treatment.

The first time I approached her with the intent of injecting her thigh with the medication, this tiny girl erupted in to a blaze on anger and betrayal, knocking the syringe out of my hand.

This is not fair!” she screamed. “I have cancer, Mom! I don’t like to eat anymore, I’m sick all the time, I am bald and I can’t go to school. And now you expect to give me these shots every night that hurt my legs and make me sore?!”

I turned and walked out of the room – defeated – knowing that I was going to have to push the issue and inflict pain on her to help her to recover – to live.

I refilled the syringe with the $200 injection and walked back to her room. When I entered, I saw a frail little girl with a look of complete serenity on her face. She wasn’t smiling, but she was intent.

“I’m sorry Mom,” she said. “I want to live, and I know you want me to live. I won’t fight this anymore – we’ll fight this cancer together.” She then extended her leg to take the injection.

In the 14 months that followed, I never again heard her complain about her medicine or her treatment. She made the decision to fight and to live that day – and by the grace of God she is still here with me today.

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Please support International Sarcoma Awareness Week: July 18-26, 2009.  Events have already been announced in Australia, Canada, Denmark, and Washington, DC, with more to come.

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A Moment in Sarcoma from Johanna

Laguna Beach, California

Statistics

As a scientist
when I first became ill
I obsessively asked my doctors
for the numbers:
What is the survival rate
at 2 years? 5 years?
How many
are alive
10 years out?
The doctors gave me numbers:
80%, 30%, 65%, 72%, 20%
I was possessed
by the statistics
Maybe this study is newer
Maybe the treatment approach differed
Maybe this sample was contaminated
No matter the number
I kept asking.

Then one day
I found the perfect answer
the one true answer
heavier than lead
lighter than air
more precious than gold

Sitting in the office
of the sarcoma specialist
in a moment of grace
I gazed past the doctor
toward his kind-faced nurse.
Tell me, Susan, I said,
Is there a chance
I will dance
at my grandson’s
bar mitzvah?

Her eyes perfectly
untroubled
gazed back.
Life is so
Unpredictable, she said.
Go buy a dress.

——

Please support International Sarcoma Awareness Week: July 18-26, 2009.

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A Moment in Sarcoma from Jennifer

Centereach, New York

August 1, 2007 was the date of my surgical resection of a tumor that had grown behind my right knee. I was diagnosed with synovial sarcoma five months before, just a few days after my 27th birthday. I will never forget the tears that fell from my face and onto the downy hair of my 10 month old son, who sat on my lap as I absorbed the news. Chemotherapy treatment followed shortly after, with the hope that it would shrink my 8 cm tumor – a tumor that had managed to wrap itself around a major leg nerve.

As I sat on my gurney waiting to be wheeled into the operating room, I thought about the “what ifs”. What if they can’t remove the tumor in its entirety? What if they can’t spare function to my leg? I was well aware of these possibilities. My surgeon had explained them all to me just one week prior to my operation. His first priority was to save my life; his second was sparing my limb. He discussed amputation, prosthetics and physical rehabilitation. All I wanted to hear was that he would do everything he could to save my leg, and I told him so. He said that he would give it his all.

Awakening from the fog of anesthesia, I looked at my right leg. It was wrapped in layers of gauze. Move your toes, I told myself. My toes moved and wiggled. It was my own, be it impaired, version of a victory dance. With my beeping morphine pump cheering me on, I slowly flexed my foot. This time the tears that fell from my face were those of utter joy. I knew that my surgeon had kept his word. I had my life and my leg!

——

Please support International Sarcoma Awareness Week: July 18-26, 2009.

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