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Inspiring Reflections

The Bike

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-bikeold 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. - Louiseflower

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

Sisters

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. Beautiful - A drawing by Rachel LozanoThen 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

AlanAlan's Peace

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

Flowers in the sun

"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."

- Aleksei, 14 years old

Hope

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.
- Mary

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

Scans

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.
- Suzie

flowerOlly's Journey

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

The following people have graciously shared their stories with us. Excerpts of their stories are featured on the sarcoma subtype pages. Diana's story and Wendy's story have just been added!

Aidan

Aidan, South Africa

rhabdomyosarcoma

Alan

Alan, California

leiomyosarcoma

Aleksei

Aleksei, Canada

Ewing's sarcoma

Bryall

Bryall, New Zealand

osteosarcoma

Cari

Cari, California

osteosarcoma

Carly

Carly, Massachusetts

mesenchymal
chondrosarcoma

Charisse

Charisse

DFSP

Christina

Christina, Pennsylvania

synovial sarcoma

Dale

Dale

epithelioid hemangioendothelioma

David

David

osteosarcoma

Deborah

Deborah, Illinois

periosteal osteosarcoma

Diana

Diana, Illinois

MFH

Hilary

Hilary, Virginia

synovial sarcoma

Jeanna

Jeanna

chondrosarcoma

Jessica

Jessica

Synovial Sarcoma

Justin

Justin, Nevada

osteosarcoma

Kate

Kate, United Kingdom

DSRCT

Kelly

Kelly, Michigan

osteosarcoma

Logan

Kenji, California

Ewing's sarcoma

Kyle

Kyle, Louisiana

DSRCT

Lavon

Lavon, Texas

liposarcoma

Logan

Logan, Michigan

osteosarcoma

Lori

Lori, Texas

MFH

Mary

Mary, New Hampshire

parosteal osteosarcoma

Mel

Mel, Maine

osteosarcoma

Olga

Olga, Russia

Ewing's sarcoma

Pierre

Pierre, Belgium

Ewing's sarcoma

Rachel

Rachel, Illinois

Askin's tumor

Sandra

Sandra, Louisiana

solitary fibrous tumor

Sara

Sara, Colorado

chondrosarcoma

Sigridur

Sigridur, Iceland

DFSP

Tammi

Tammi, United Kingdom

DFSP

Teresa

Teresa, Canada

liposarcoma

Tom

Tom

chondrosarcoma

Tracy

Tracy, Canada

chondrosarcoma

Truman

Truman

osteosarcoma

Wendy

Wendy, Florida

osteosarcoma

 
 
 

Share Your Story

Two sarcoma survivors chatting

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.

Share Your Story

Your First Name: A value is required.
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Your age when diagnosed: A value is required.
The year of your diagnosis: A value is required.
The type of sarcoma diagnosed: A value is required.
Where was the disease located? A value is required.
Which treatments did you receive?





Check any of these issues that are a part of your story:







1. Tell us about your diagnosis: [Consider the following questions: What was life like leading up to diagnosis? What were you doing with your life then? How did you end up in a doctor’s care, and how long did it take to get a diagnosis? What moments do you remember the most? How did you feel?]

A value is required.

2. Tell us about your treatment: [Consider the following questions: How long was your treatment, and what was it like? How did you handle side effects that bothered you? What coping methods did you use to keep going? How were your relationships affected? Describe any particular memorable moments that other patients and survivors might understand.]

A value is required.

3. Tell us about your recovery: [Consider the following questions: How long did it take to recover from the initial sarcoma experience, or are you still working on that? What was your recovery like (did you have physical therapy, pain, disability?) Have you dealt with any recurrences, physical or mental difficulties since treatment?]

A value is required.

4. Tell us about life now: [Consider the following questions: What is your life like now? What accomplishments do you feel good about? Have you done anything exciting or made changes in your family, location, career, etc, since your diagnosis? How is the sarcoma experience a part of your life or identity now?]

A value is required.

5. Share your thoughts and tips for new patients in a similar situation (optional): [Consider the following questions: What do you wish you had known in the beginning that would have helped you? What would you say if a friend was just diagnosed with sarcoma?]

Would you like to invite people to donate to sarcoma research in your honor?

Please make a selection.

Would you like for your story to be visible in online search engines?
This will make it easy for anyone in the public to find your story. If you choose not to publish your story in search engines, it can only be found by those who visit this website directly.

Please make a selection.

Would you like to allow visitors to leave public guestbook comments on your story?
We will moderate these comments to ensure that their content is appropriate.

Please make a selection.

Would you like to allow visitors to leave public comments via Facebook and Google+?

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IMPORTANT! In case of form error, please save a copy of everything you have written before submitting it! Within a day or two, we will contact you and ask for two photos for your page.

By submitting this document, you agree to allow it to be published online at SarcomaHelp.org. Your photo and/or a quote from your story may be featured on one or more pages of the website. Your story may be copy edited to ensure that it is easy to read and understand. In order to maintain your privacy, your last name is not requested and will not be published. Please do not include any last names in your story, and make sure to obtain permission before including other people in your story. If you share a link to your story with family and friends, be aware that others will then have access to this very personal information associated with your name. This might affect the way others treat you, either personally or in the workplace (or in a job search, for example).

If you are not sent to a "thank you" page after you click submit, please check over your form and add the required information!