It sat in the garage, unused for years. This shiny, silver, blue and black bike, still with training wheels attached, beckoned a rider. We gave this bike to our then four-year-old son, before he became ill, very ill.
On a beautiful, warm April Sunday afternoon, a miracle happened.... Read more.
One out of Ten
I was first diagnosed with Leiomyosarcoma (fondly known as LMS) on my 54th birthday, the 4th of July, 1997, when a tumor the size of a baseball ruptured from my small intestine, more than seven years ago as I write this. The only studies we could find back then predicted that 9 out of 10 did not survive 5 years. Immediately I decided that if one out of the 10 lived, I would be that one. Whatever it took, I would hang on until they discovered something that could help me. - Louise
When I was diagnosed...
I wish I had known not be scared about the "what ifs" and to focus on what I can do today to make my life and my family's life a positive experience. I had to learn to walk unassisted through rehab, and I had to commit to training my brain and body to work differently. I now can golf and swim, and I'm back to work. I didn't think I would be able to do any of this at the time of my diagnosis, and I don't think my doctors did either. Although at times I wish I had not had to go through this, it's a journey that has made me and my family stronger." - Ruth from our Facebook group
I am the only big sister of one - Kathy. I have always wished that I was the teacher that I thought all my big sisters have been to me. Then I got cancer. Kathy came to visit me in the hospital during one of my first treatments.My hair was really falling out and I guess I did not say anything to her - it is truly one of the most unspoken humiliating side effects of the whole process. She was trying so hard to be my big sister, she offered to massage my head, to comfort me and I let her. And then I heard the gasp. A large clump of my hair came out in her hand and she was so shocked and I was so ashamed because I AM THE BIG SISTER and I could not offer her any protection from me. Kathy hid behind me and cried a little and then recovered herself valiantly. I guess these big sister things are really lines drawn in the sand. - Debbie
What I remember about my reaction to the discovery of LMS was my sense of peace regarding where I was in life. As my children were both adults with families and well-established in their careers, and my wife was strong and active, I felt that I could move forward in good spirits no matter how many days, months, or years lay ahead for me. - Alan
Side Room 2
A very neat affair
My room, with elegant taps
An imperative washing of hands
With every visitor.
The clinical waste does mount up
But is well maintained.
I declare this room has all good features
Confinement can possibly have.
- Lynda, diagnosed at 49
Hope for the Journey
"I think not knowing what to expect is good because it makes you just deal with what happens one day at a time. If a friend of mine was diagnosed with a sarcoma, I would tell them I am here for them and that they will get through it just like I did."
hope remains undeterred.
she pulls on her jeans, ties her boots
and walks out the door for another test.
she glows below the autumn trees
feet hitting pavement as they’ve always done.
hope is my best friend,
sometimes i’m unsure if she’s beside me
or within me
if these boots are mine or hers.
Caring in Hard Times
Being a caregiver is not a thankless job, although as the weeks and months wear on it certainly feels that way. No one applauds us when we fill a prescription, give a glass of water, adjust a pillow, bandage a wound or schedule a doctor’s appointment. Our reward comes from knowing that someone we love feels better, safer and healthier because of what we do. I have to believe that’s a good enough reason to get up tomorrow and do it again. - Jane
Shadows and spots
mark my fate
on a film, just a film
between life and death.
I can see through it;
I can see the light behind it.
Olly didn't want his cancer to run our lives. We were all devastated by the situation and found it incredibly difficult to get on with things in our lives. But every time we spoke to Olly on the phone, he would ask us what we'd been doing. We always knew he'd ask, and knew we had to have something to tell him or he'd know we'd been miserable about him. I'm sure this was his way of keeping us going and not letting the cancer completely take over. - Emily
Hope is...enduring chemo, so you can live to see your one year old daughter grow up.
- Rene from our Facebook Group
Hopeful Sarcoma Stories
Share Your Story
The Initiative is reaching out to the sarcoma community to publish the hopeful stories of those who have completed their initial treatment. Selected stories and quotes will be featured throughout our website in order to provide hope and inspiration to as many people as possible. For this particular project, we are seeking the stories of people who are at least six months past their initial treatment for sarcoma. This "distance" should allow participants to look back on their initial diagnosis and treatment and to share what is going on in their lives now (this might include "moving on," dealing with post-treatment challenges or dealing with further disease). Children are encouraged to share their stories with a parent's written permission.
Guidance for the Writing Process
Are You Creative?
We also welcome e-mailed submissions in the form of essays, poetry, photographs, and visual arts.
Story pages read like magazine articles. The magazine style provides a summary of your story, from before your diagnosis to the present, and also provides details about specific experiences that are important to you. As you write, consider what you wish you had known when you were first diagnosed, and consider the words that might have helped you along the way.
To send us your story, please completely fill out the form below or save and edit this Open document.