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.

Email to a Friend Email to a Friend

A Moment in Sarcoma from Karen

Houston, Texas

My 14 year old son, Keaton, was diagnosed in 2007 with metastatic osteosarcoma: bone cancer. In September of 2008, he had his fourth thoracotomy at Houston’s M. D. Anderson hospital. A post-surgery complication of a pneumothorax (air leak) kept him in the hospital for forty days after surgery. During this time, Hurricane Ike hit Houston and the hospital was in lockdown for four days.

Keaton is a very optimistic child and views cancer as a minor obstacle in the path of his true passion in life, which is the study of reptiles and amphibians. He has a collection of reptilian pets, and during his hospital stays I am required to care for them and give him status reports.

Keaton was very upset at the thought of his pets being unattended and possibly dying back at our apartment while we were stuck in the hospital. I managed to sneak his chameleon, which required the most intensive care, into the shower bay of his hospital room, where we could care for it and ease Keaton’s mind.

That night, as the winds howled outside and I lay worrying, not only about my son’s critical health condition, but also about the storm bearing down on this city, Keaton spoke up from his bed beside me. He said “Mom, you know we are so lucky. Things always work out right for us!” He was so happy he had his lizard safe with him; to him the immediate concern was taken care of, and that was all he focused on. Keaton doesn’t sweat the big things (like an incurable disease), only the small things (like lizards), as he lives for the moment. Luck is in the eye of the beholder.

——

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

Email to a Friend Email to a Friend

A Moment in Sarcoma from Vedran

Croatia

First hand experience (find the hidden sentence using the colored letters)…

I was lying in the hospital recovering from the surgery during which a tumor was removed just above my left knee. I was very lucky because amputation was not needed. I didn’t know if more chemo treatments were needed. And then one day, just before I was transported to another hospital to start with the physical rehabilitation, my doctor came. He told me that the tumor did not react well to chemo and that it was practically intact. This meant that I had to return to oncology as soon as I finish my rehabilitation to receive some more chemo. That really struck me. I was crying and depressed all day long.

In a few days I started with my rehabilitation treatment in a specialized hospital. I was in bad mood since it had been more than a month since I was home. Then one day I met Milka, an 8-time paraolympic. She’s in a wheelchair, but it doesn’t stop her from laughing all day long. I never met anyone with such a positive energy. “As long as I can smile, I have myself and I’m happy,” she says. She didn’t have to say anything, I would just a look at her smiling face and laugh. Her motto in life is that no situation is so difficult that man can’t find something positive in it. And that’s the truth.

I had to face the fact that I’ll never again be able to cycle the way I did before, but I realized how much I enjoy swimming. I spent many days in hospital, but I read more books than I did in years. There were some tough moments, but cancer taught me how precious life is.

[Vedran is a 28 year old osteosarcoma survivor.]


Vedran’s Moment in Croatian

Iskustvo iz prve ruke (pronađi sakrivenu poruku)…

Ležao sam u bolnici oporavljajući se od operacije tijekom koje mi je odstranjen tumor iznad lijevog koljena. Bio sam sretnik – amputacija nije bila potrebna. Tada još nisam znao hoću li morati primiti još kemoterapija. Neposredno prije nego sam bio prebačen u toplice, kako bih započeo svoju rehabilitaciju, posjetio me liječnik. Rekao mi je da tumor nije dobro reagirao na protokol prije operacije, bio je gotovo netaknut. To je značilo povratak na onkologiju čim završim s rehabilitacijom, a za mene jedan veliki korak unatrag. To me zaista pogodilo. Plakao sam i bio tužan čitav dan.

Nekoliko dana nakon započeo sam svoj oporavak u toplicama. Još uvijek sam bio loše volje jer prošlo je već više od mjesec dana otkako sam zadnji put bio kod kuće. Ubrzo zatim upoznao sam Milku, osmerostruku paraolimpijku. Ona je u kolicima, no uvijek nosi osmijeh na licu. Nikada prije nisam upoznao nikoga s toliko pozitivne energije. “Sve dok se mogu smijati, imam sebe i znači da sam sretna”, ističe Milka. Nije morala ništa reći, pogled na njeno nasmijano lice bio mi je dovoljan da budem dobre volje. Njezin moto u životu je: nijedna situacija nije toliko teška da se iz nje ne bi moglo izvući nešto lijepo. I to je zaista istina!

Bilo je to vrijeme velikih promjena. Morao sam prihvatiti činjenicu da nikada više neću moći biciklirati na način koji sam prije mogao, ali sam shvatio koliko uživam u plivanju. Morao sam provesti brojne dane u bolnici, ali sam pročitao više knjiga nego što sam ikad prije. Bilo je teških trenutaka, ali rak me naučio koliko je život dragocjen.

[Vedran, 28 godina, prebolio osteosarkom]

Email to a Friend Email to a Friend

A Moment in Sarcoma from Mackenzie

Newtown, Connecticut

It’s hard to pinpoint just one moment dealing with this horrible disease –there are so many bad ones like diagnosis, chemo, and surgery — but I will try to focus on the good. My little brother, Jordan, is in the battle of his life.

At the age of 32 he was diagnosed with Osteosarcoma. He had a better shot at winning the lotto than he had of getting this rare cancer. Since diagnosis, he has endured months of chemo and a massive surgery to remove his left femur. Through all this he managed to coach the high school football team, and hardly miss a beat. At their annual banquet he was honored when the school came up with an award in his name to be given out to a kid on the team every year who exemplifies toughness and teamwork. This year, Jordan was the first recipient.

Jordan is the coach who’s never missed a practice or game unless he was at the hospital getting chemo, who coached from a golf cart when he was too weak to walk, and who taught the kids on the team what toughness really means. It’s not about wining a game or tackling a player, it’s about facing the battle of your life with fight, will, hope and good spirits. Jordan will beat this beast, this is what I pray for every day!

——

Please support International Sarcoma Awareness Week: July 18-26.  Plan an event in your area!
Want to view more Moments in Sarcoma?

Email to a Friend Email to a Friend

A Moment in Sarcoma from Lori

Rives Junction, Michigan

My son. My joy. Vibrant at age 21. Strong and tan, full of strength. Soccer goalie. Soccer junkie. Ball always at his feet. Soccer friend always at his side. Soccer…always soccer.

Enter hip pain. Enter Osteosarcoma of the pelvis. Enter mortality. Enter hemipelvectomy amputation. I watch my son limp through the doors to the pre-op area. His gait unsteady, his back to me. Walking away from me. I capture this last walk on two legs with my camera. The automatic doors began closing too soon, obscuring the left half of his body. The image I have preserved with the click of the shutter is just like his life now, his left side cut away.

How do I stay strong as I gaze upon my son so changed? This moment is almost harder to endure than the cancer itself. My heart wants to break, but I must be stronger than I have ever been. Super human strength allows me to reach out and gently push the door open to his hospital room to enter. There he is. Sleeping. Covered in a single bed sheet. His not so unfamiliar form greets my eyes. My gaze travels to his face. Images hit me instantaneously. I see him as my infant son, my toddler, my school boy, my young man. I see my son’s life in his sleeping face. My joy. I hear his laughter inside my head. See his movements. Remember his moments. Thousands of images layer upon layer in my mind.

After awhile he awakens and semi-opens his eyes. Through a fog of pain he murmers, “I love you , Mom” and gives us all a thumbs up. In this gesture he comforts me to the point of weeping, as I realize he has not yet begun to fight.

—–

Please support International Sarcoma Awareness Week: July 18-26.  Events have just been announced in Buffalo, New York and Wellesley, Massachusetts.

Email to a Friend Email to a Friend

A Moment in Sarcoma from Olga

Tobyhanna, Pennsylvania

My moment is one of the times my daughter was in the hospital. She was very sick, and I told her that I would take osteosarcoma from her in a heartbeat if I could. She looked at me and said she would not allow it. I asked her why, and she said, “Mom I am young and healthy. I have a better chance at getting through this horrible treatment and beating this cancer, but you would not survive it.”

What do you say when your child tells you this? I couldn’t say a word; all I could do was cry, like I do every time I remember that moment. My daughter is my real hero, and I am honored to be her mom.

Email to a Friend Email to a Friend