What is Twist Out Cancer?

14 Monday May 2012

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As we prepare to officially launch our new Twist Out Cancer website- we thought we would give you a preview to what we are all about!

After finishing treatment in May of 2011- I found myself overwhelmed with gratitude.  I was grateful that I could wiggle my toes- climb a fight of stairs- and see the world in a fluctuating state of hyper-color. In the midst of treatment when I was immuno-suppressed and unable to be around family and friends-I longed for a way to connect. As I started to feel increasingly isolated and alone I decided to put out a call to action. I videotaped myself twisting and asked “whose joining me on the dance floor”. In a matter of days I had hundreds of videos from thousands of twisters from all corners of the world. The twist was alive and well- and knew no boundaries.

During my fight these videos provided me with the necessary love and support to get through the next round of treatment, the unexpected set back, and the hardships that followed after leaving the hospital for the very last time.

These videos were my gateway to the world around me- a world that I no longer felt apart of.

Determined to give back in a big way- I decided that I wanted to share these gits with other cancer survivors who are in need. I sincerely hope that this site will be a place for survivors to feel connected, and for supporters to give in a meaningful way.

In the next couple of weeks you will have an opportunity to all that we have been working towards. In the meantime here is a brief insight into what Twist Out Cancer is all about.

Enjoy.

To learn more about Twist Out Cancer click here.

 

Thank You Chubby.

13 Sunday May 2012

Posted by in Cancer, events, My Twist On cancer, Twist

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It has been a year since I was tied up, strapped down, locked in.

A year since I finished treatment- a year since I tiptoed out of the shadows and into the sunlight -and a year since I left the hospital for what I hoped would be the very last time.

In the past year, I have chosen to experience the world in oscillating states of hyper-color. These moments are cherished, savored, and readily accessible.

These moments give me strength, provide guidance, and most importantly provide hope.

On Thursday May 10, 2012- one year after finishing treatment, we held a Twist Out Cancer fundraiser in Montreal – a city that I called home for nearly 7 years. In the last year this community nurtured and supported me in a way that I did not know was possible. With nearly 200 people in attendance- we were able to raise awareness and funds to help further Twist Out Cancer’s mission, and perhaps more importantly- I was finally able to say thank you.

As fate would have it- the same weekend Twist Out Cancer Touched Down in Montreal,- Chubby Checker planned to celebrate 50 years of the Twist.

This past Saturday night, at the Rialto Theatre, I took the stage with the man that helped inspire a movement- with the man that has been the focal point of my narrative-with the man that has helped show me that “life is not about waiting for the storm to pass but its about learning to dance in the rain.”

As we twisted- Cancer moved from center stage into the chorus.

As we twisted- the heaviness of the last year was lifted.

As we twisted- the pain that I endured softened.

Thank you Chubby for being a part of my past- but more importantly a part of my present and future.

Dancing with you was one of the best moments of my life.

You helped me find meaning in the suffering- and for that I am incredible grateful.

 

Media Alert: Join FC Raiders, Twist Out Cancer and The Leukemia and Lymphoma Society in Kicking Out Cancer

04 Friday May 2012

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For Immediate Release

Media Advisory: Community Calendars, Planning Editors, and Assignment Editors

Contact:  Jenna Benn, Founder of Twist Out Cancer

                Jenna@twistoutcancer.org

 

Join FC Raiders, Twist Out Cancer, the Leukemia and Lymphoma Society, in Kicking Out Cancer!

May 4, 2012, Chicago…On Tuesday May 15th, Twist Out Cancer, the Leukemia and Lymphoma Society and FC Raiders will be holding its first “Kick Out Cancer” event.

Raiders FC U17 Premier (currently ranked #1 in Illinois, #1 in Region II and #6 Nationally) will be playing against Galaxy SC 94/95 Blue (ranked #4 in Illinois, #7 in Region II and #42 Nationally) in a Midwest Regional League match that will also serve as a charity soccer match.  All proceeds will benefit Twist Out Cancer and the Leukemia and Lymphoma Society.

Amazing Race Winners, Ernie Halvorson and Cindy Chiang Halvorsen will be leading the twist with Twist Out Cancer during the ½ time show and signing autographs.  Ernie and Cindy traveled the world with Ethan Zohn, winner of the television show and two time Hodgkin’s Lymphoma survivor. Ethan is currently recovering from a second stem cell transplant and is involved in both Twist Out Cancer and the Leukemia and Lymphoma Society.

The Reason:

In May 2011, Noreen Karadsheh (head athletic trainer of Raiders FC U17 Premier) was diagnosed with Stage IIb Hodgkin’s Lymphoma. After six months of intense and invasive treatment, Noreen is currently in remission. In order to honor her journey and celebrate her health, all proceeds of the event will go towards charities that are close to her heart.

The Charities:

Twist Out Cancer is a support community…with a twist! Founded by 30-year-old Grey Zone Lymphoma survivor Jenna Benn, TOC leverages social media to help survivors and their loved ones combat the feelings of isolation, loneliness, and helplessness that often accompany cancer diagnoses and treatment. TOC provides a forum through which anyone affected by cancer can share thoughts, experiences, stories, and insights, allowing for the exchange of ideas, encouragement, and wisdom from one community member to another. Most importantly, each survivor is invited to create a profile page distinguishing his or her individual “twist” on cancer. This “twist” becomes a collection of videos, posts, songs, pictures, or other media gifted to the survivor by his or her loved ones and friends—it is a living, changing, active, and personalized digital legacy that encourages loved ones to give, and survivors to share. Twist Out Cancer has the power to affect how we fight and heal, and change the way our community provides support.  www.twistoutcancer.org  To watch Jenna and Noreen Twist Out Cancer- click here.

The Leukemia and Lymphoma Society (LLS) is the world’s largest voluntary health agency dedicated to blood cancer. The LLS mission: Cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families. LLS funds lifesaving blood cancer research around the world and provides free information and support services. www.lls.org/il

When:  Tuesday May 15, 2012

7:00 PM-9:00 PM

Who:  Raiders FC U17 Premier vs. Galaxy SC 94/95 Blue (Midwest Regional League match), Twist Out Cancer, LLS

Where:  Flames Field, 901 W. Roosevelt Road, Chicago, IL 60608

Cost:  $5 admission, $2 for children 12 and under.  To purchase tickets online go to http://kick-out-cancer.eventbrite.com/

Twist Out Cancer is a support community…with a twist on cancer. www.twistoutcancer.org


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Twist Out Cancer Launches Montreal Chapter on May 10th

02 Wednesday May 2012

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On May 10th, 2011-I finished treatment and left the hospital for what I thought would be the very last time. After undergoing 720 hours of chemotherapy, 4 blood transfusions, 4 surgical procedures, and multiple scans- I left floor 16 feeling fragile, weak-yet hopeful.

I couldnt wait to feel the sun on my face. I couldn’t wait to fill my lungs with fresh air. I couldn’t wait to slowly watch my body and mind rebound from the trauma of the past year.

And so here we are a year later.

And what a year it has been!

On May 10th, Twist Out Cancer will launch its first international chapter in Montreal, Canada. This will be a night of celebration, movement, and of course twisting. My Montreal family took care of me over the last year- repeatedly demonstrating how love knows no bounds.

As I approach  another marker, another finish line and another moment in time, I hope you will join me in twisting.

Join us.

To learn more- click here.

Cancer’s New Home.

27 Friday Apr 2012

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I am surrounded by a sea of boxes that serve as reminders of what was and what is.

Each memory- individually wrapped- sealed tight- waiting to be discovered and rediscovered.

Over the last few years I have consolidated-purged- and deliberately parted with many of my material possessions.

In all of my moves I have made the difficult decision of what to take with me and what to leave behind.

This last June, 10 days after leaving the hospital for a dangerous infection, I moved out of my apartment into a new one. I needed a fresh start- a new beginning- a new space that didn’t remind me of cancer. My previous apartment had been painted in sickness, and wallpapered with pain.

Last year when I moved from floor 30 to floor 29, there was a clear demarcation between the past and the present. I had closed the chapter on victim and was determined to write the chapter on thriving survivorship.

And in the last year-my hopes and dreams were not only realized but delivered -ten-fold.

A few nights ago in the midst of packing I had a run in with Cancer. This time she was not in my blood, but instead found twisting between expired prescriptions, worn out wigs, home made scarves, and hats. She also had taken up residence in my previously worn surgical masks,plastic gloves and hand sanitizer.

The memories of what was had resurfaced and soon enough I was on the floor in a sea of tears.

As I lay still with those memories, I knew I had a decision to make- as it was- my move.

That night, I chose to leave her behind.

I wasn’t going to allow her to infiltrate my new space. I wasn’t going to let her show up and ruin more moments. I wasn’t going to let her take a lead role in this new chapter.

And so as I prepare to move from floor 29 to a new home built for two-I decided to package up cancer- and seal her in a tight little box, with no room to breathe. And there she can live amongst a sea of discarded memories, in a landfill somewhere far from here.

Open me up and look inside.

13 Friday Apr 2012

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This past week I had scare.  I was feverish, fatigued, and convinced that the scar tissue in my neck was changing. As I slowly moved my fingers from one lymph node to the next, I had trouble differentiating between lumps and bumps and scarring.  Beneath the skin lies what was once was a battle field. What used to be filled with cancerous tumors- is now scar tissue, which serves as a reminder of what was and what is.

As time passes my scars change- the ones that I  can see and feel-and the ones that lie beneath. Keeping up with those changes can be daunting.

My encounter this week with fatigue and fever -led me into a tail-spinning panic.

What if the cancer is back?

What if….what if…..what if….

The what if’s were starting to overpower my ability to be present.

I have worked hard to be present.

I decided that I would rather have them open me up and look inside than to be left wondering-what if….

As I coated my belly with barium, and wrapped myself in a caccoon of warm blankets, I breathed in one, two, three, four, five and out- one, two, three, four, five, six.

As I entered the CT scan, overwhelmed with fear, determination, and hope, it became clear that even if cancer has left my body, it has not left my mind.

The following morning I was told that my scans were still clear.

As I breathed a deep sigh of relief, it became all the more evident that this post treatment chapter is a constant balancing act between sickness and health. Like my disease, I now live somewhere in that grey zone.

As I continue to live in the here and now, in between the black and white, in between the sunlight and shadows, I have some decisions to make. Every day I have the choice to either let fear overpower my present or to let determination and hope guide my future.

Every day I have the choice to let myself be defined by the disease or to live in spite of it.

And every day I have the choice to retreat into what was, or to accept what is.

I choose today. I choose now. I choose hope.

 

To My Seder Sisters

05 Thursday Apr 2012

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It has been a year.

A year since I was tied up, strapped down, locked in.

A year since I was on Floor 16, staring aimlessly at the lakefront path, hoping and praying that one day I would be able to move, bend, run and twist with the outside world.

A year since my parents and I quickly read through the Passover Seder, retelling the story of the Jews enslavement while in Egypt and eventual exodus into a land of freedom and hope.

From tied up to untied-from enslaved to set free- the Passover story in many ways is reflective of my journey with cancer.

As I sit down with family, friends and loved ones this holiday, may I remember what it was like to be enslaved by this disease, trapped in my own body, and tied up for year. May I remember what it was like to feel isolated and removed from the world around me, and what strategies I chose to implore in order to hold on to hope. And may I remember what freedom felt like and tasted like when I breathed in that first breath of fresh air after leaving the hospital for the very last time. May I remember what it was like to slowly tiptoe from the shadows into the light, from sickness into health, from enslavement into freedom.

And may I remember my life saving team that helped shepherd me into this new chapter.

I am forever grateful to you.

To my seder sisters.

Join TOC on April 17th: Making Space for Change- Health Heroes

02 Monday Apr 2012

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On Tuesday April 17th at 7:00 PM, Jewish United Fund, JCC Sidney N. Shure Kehilla, and the Chicago Center for Jewish Genetic Disorders. will host “Making Space for Change – Health Heroes: Promoting Social Change in the Area of Healthy Living.

Featuring:

Jonny Imerman, Imerman Angels

Matt Matros, Protein Bar
Jenna Benn, Twist Out Cancer
Jessica Fisher, Dinners around the Table, JCC PresenTense Chicago Fellow
Alan Genendar, Chicago Center for Jewish Genetic Disorders

Join us for a thought-provoking night focusing on healthy lifestyles!

Passionate speakers will provide fast-paced overviews of their ventures in healthy living. Afterwards, engage the speakers on a more in-depth level.

RSVP by emailing kehilla@gojcc.org by April 16. $10 advance/$15 door. Includes one drink ticket and healthy appetizers.

Special thanks to JCC PresenTense Chicago.

Through Sharing Comes Hope.

01 Sunday Apr 2012

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This past weekend 550 young adult cancer survivors, supporters, caregivers and loved ones gathered in Las Vegas to listen, learn, support, and grow.

Our hope was coupled with fear.

Our strength was coupled with fragility.

Our honesty was coupled with insecurity.

While cancer may have been the reason we were brought together- she was also responsible for tearing us apart.

Are you in treatment?

Are you in remission?

Have you had recurrence?

Are you cured?

We were labeling, categorizing, and inevitably separating each other into manageable groups.

And as we seperated this disease into her many shades of grey- it became apparent that it was the desire to live, the desire to make change, the desire to live in spite of Cancer that united us, that guided us, and instilled a sense of community and hope amongst a sea of strangers.

As we were repeatedly stripped down to our most vulnerable selves, we confronted our darkest fears, and tiptoed into our hopes and dreams.

The same disease that left my body after 2 rounds of chemotherapy, took a brother at the age of 34, and a daughter at the age of 26.

The same disease that brought me strength and clarity, caused others repeated pain, devastation and hardship.

It was one conference but not one voice.

It was one disease but not one outcome.

It was one journey but not one story.

As a young adult cancer survivor it is my hope that we continue to share our stories, continue to share our voice, and continue to give a face to cancer.

Through sharing comes strength, through sharing comes bravery, through sharing comes community, and through sharing comes hope.

I hope you will join me.

Join Lymphoma Survivor and Artist Carrie Debacker and Twist Out Cancer for an Evening of Art, Reflection and Celebration

16 Friday Mar 2012

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Join Lymphoma Survivor and Artist Carrie DeBacker and Twist Out Cancer for an Evening of Art, Reflection and Celebration.

Reception: April 27th 6:00pm-9:00pm
Exhibition: April 14-29th
ABOUT THE WORK:

DeBacker’s work explores the idea of the body as a contested and transformative site, with internal and external forces vying for ownership over its processes. These influences shape our self-perceptions, which manifest themselves in performative actions. Experiences of physical vulnerability may call these perceptions into question, necessitating a re-structuring of beliefs. A recent Hodgkins Lymphoma survivor, DeBacker uses aspects of her personal experience as an ambiguous “text” to be illustrated.

Carrie Debacker created a line of t-shirts for Twist Out Cancer with proceeds benefiting the organization’s mission. This is an opportunity to meet the artist and learn more about Twist Out Cancer.

ABOUT THE SPACE:

Gallery 901 exhibits strive to increase awareness around pressing social issues to a diverse audience. We present exhibits of community artists and groups which celebrate the affirmative impact of the creative process, and which encourage positive social change.

MORE INFO:

http://www.openstudioproject.org/site/exhibits.asp

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