Twist Out Cancer Goes Camping.

A few months ago, my dear camp friend and fellow Lymphoma Survivor Ann Altman, wrote about her twist on cancer. Her poignant entry was featured on my blog and struck a chord with many of our readers. Ann was often the voice of reason and the calm in the midst of the storm throughout treatment and the days thereafter. This weekend, after 20 years of childhood, young adulthood, and cancer- we will be uniting for the first time.

As you can imagine- I am overwhelmed with excitement.

After posting Ann’s beautiful entry on Facebook, Jamie Lake, another Birch Trail Camp for Girls alumni reached out to me to let me know how touched she was by my story and my renewed friendship with Ann. After a few email exchanges back and forth Jamie asked if we would be willing to create a day of TOC at the JCC’s Camp Chi in Lake Denton Wisconsin. With excitement, we accepted her invitation.

Over the last few months I have had the pleasure and privilege of working with Northwestern University Professor Danny Cohen and two student interns Stephanie Aaron and Kali Maginity to develop a formal TOC curriculum that can be replicated and facilitated at camps, college campuses, religious institutions and community centers. This past Saturday, TOC had the privilege of working with 62 thoughtful, mature, and charismatic SIT’s ( 15-16 year olds).

It is hard to sum up the magic that happened that afternoon.

Not only were we able to educate and inform this remarkable group of young adults about the work of TOC, but we were able to give back to the brave and courageous survivors that are showcased on our site.

To learn more about the training- watch, learn and listen- they have quite a way of communicating

 

To learn more about the Twist Out Cancer Curriculum contact Jenna Benn at jenna@twistoutcancer.org

A special thanks to Jamie Lake and Gary Yates for believing in us. We are so grateful for the opportunity.

 

View Lainie’s Call to Action 

View Their Response

Anna’s Call to Action

Responses:

Love Will Survive

This One’s For You

Daniel’s Call to Action

View Their Response

 

A Participant’s Reflection on Twist Out Cancer

Friday morning Jamie Lake gave the SITs a brief introduction to a three hour program that would take place the following day. The only information she provided for the SITs was that they were going to be involved in a program organized by a cancer survivor. She discussed the Jewish value of healing the sick, guaranteed that this session would be fun, and left the SITs to enjoy the rest of their day (which happened to be Waterpark Day)! Saturday afternoon the SITs all made their way to the Moadon, all feeling very doubtful that such a long session about cancer could be light-hearted and engaging. Upon entering the room the SITs were greeted by a young woman named Jenna Benn with a funky haircut. She quickly explained that her unique “do” was a result of her experience with cancer, and then asked the SITs to compile a list of all of the worlds that came to their minds when they thought about cancer. After a few minutes, each group read their responses, and afterwards one of Jenna’s assistants informed them of the ratio of positive words to negative words that she counted: 28:50. Jenna went on to tell her story and described how social media played a huge role in her persistent positive attitude. She concluded by explaining the origin and the nature of her project called “Twist Out Cancer.” While she was healthy Jenna loved to dance. A special song to her was the Twist, so in order to recapture the happiness she formerly got from dancing, Jenna posted a video of herself twisting away and asked others to post videos of themselves doing the same. The responses possessed a powerful healing tool which led Jenna to design her own website called Twist Out Cancer where cancer patients or survivors can post videos and pose a challenge or call to action for people to answer. All of the SITs then accepted three challenges presented by three people whose lives have been affected by different forms of cancer. One person requested that viewers create a piece of art without using the color grey because that color reminded her too much of her sickness. Another boy asked for people to talk about or film a carefree, childhood moment because he missed out on experiencing his childhood. The final person wanted others to share their own inspiring stories. To answer the challenges, the SITs split into three groups, one for each challenge, and recorded anything that they thought completed the challenges. Whether creating beautiful art, jumping in the pool with their clothes on, or sharing a touching story, it’s evident to see that the SITs went above and beyond expectations while answering their challenges. To conclude that afternoon, all of the SITs watched all three responses and joined in to dance the Twist.

As an SIT myself, I can say that this program went above and beyond my expectations. I approached the session with a solemn attitude, expecting to cry and comfort friends whose exposure to cancer has been far greater than my own. Luckily, I was pleasantly surprised. Like Jamie promised, the afternoon was nothing but fun. Jenna was fantastic and inspiring, and her idea is sure to help countless people. The entire SIT class banned together with 110% effort to put together meaningful answers for each person’s challenge. At the end of the session, as I looked out to my entire SIT class going crazy doing the Twist, I was overcome with an intense sense of teamwork and genuine satisfaction in helping complete strangers. My only complaint for the afternoon is that I only thought of something to share after we were done making our video. Right here I am going to make a pact. I promise that when I return home at the end of the summer, I will make my own account on Jenna’s website so that I can respond to more challenges and make a small contribution to healing the sick.

 

 

Transformations.

It has been quite a ride the last 18 months. Some would say it was colored by hardship and trauma, others may argue it was highlighted by triumph and strength.  Depending on where you start and where you finish,  I would argue it was and is all of the above.

There have been many transformations, many juxtapositions, many changes over the course of the last 18 months.

From tied up to untied, from the shadows to the sunlight, from sickness to health- I have seen it all.

And here- in this online space- I have captured these transformations, isolated these moments in time, portrayed these hardships and triumphs in a way that is unique, that is my own, that is at my disposal for a rainy or sunny day.

In this new phase of survivorship, cancer is mostly positioned in the chorus as opposed to center stage. She is no longer singing ballads on her own, but rather hums at a low murmur.  While I have learned to expect and accept that she may never be silent, I am also grateful that on most days she no longer overpowers.  Her role in the chorus is to highlight and support the lead, a postion that she is better suited for, and that I am more comfortable with.

My relationship with her is in a constant state of flux. There are days when I am overwhelmingly grateful for the experience, and for the new set of spectacles I have to see the world. And then- there are  days, where she tricks me into hunting for tumors in my neck and chest, and she fools me into thinking that my scar tissue is yet another mass.

And so here I am 18 months later with a new set of eyes for which to see the world, but with residual scars that lie beneath.

Perhaps I couldn’t have experienced the triumph and strength, without the hardship and trauma.

And perhaps my experience with cancer, will be yet another experience that I draw upon for my next challenge, my next hardship, my next victory.

To learn more about my transformations click here.

My Speech at the Leukemia and Lymphoma Society’s Annual Meeting

It is an honor and privilege to be here tonight- to share my story with you- and to convey to you the overwhelming gratitude I have for your tireless efforts.

On December 20, 2010, at the age of 29, I was diagnosed with a rare blood disorder called Grey Zone Lymphoma that affects less than 300 people in the United States.  Because this disease is a relatively new diagnosis characterized by features of both Hodgkin’s and Non-Hodgkin’s Lymphoma, I had virtually no statistics and little research about my disease. I decided that instead of being crippled by the lack of information- it was time to write my own story.

The news of my cancer diagnosis was both jarring and devastating. While it explained the months of flu like symptoms, night sweats and weight loss, I was an otherwise healthy young adult -who had always been proactive about my health.  It took a while for me to fully process the severity of my situation.

The night that I was diagnosed, I made a pat with myself that I was going to fight this disease with the same tenacity with which I wanted to live.

With the help of Northwestern’s Oncofertility Consortium, I took steps to help preserve my chances of having biological children before I started treatment and started to believe that there could be life after cancer, and that there was tremendous hope amidst the trauma.

I started an intensive chemotherapy regimen called R-Epoch on January 22nd which included a 5-6 day in-patient hospitalization where I would receive 120 hours of continuous chemotherapy every 21 days.

On May 10th, 2011-after multiple surgeries, scans,bood transfusions, and over 720 hours of intensive chemotherapy, I completed my 6th and final round of treatment.

As I headed toward the finish line- I was tested for one last time. I had contracted what could have been a fatal infection called gram negative rods that entered into my urine and my blood stream compromising my health to the extent where I was told minutes mattered. Fighting against the clock, and fighting for my life, the months of mental and physical training were drawn upon and leveraged. After spending another 4 days in the hospital, and two weeks in recovery, I started to write a new chapter.

When I finished treatment, and ended the routine of intensive checkups and surveillance-I found myself disoriented and confused about how to re-enter the world. Desperate to connect with the body that I felt increasingly disconnected from- I was determined to find an outlet that could help me strengthen and heal in the days to come.  Running became my refuge- it was my new drug. Running not only allowed me to escape from my overwhelming fears- but it allowed me to push myself in a way that reminded me that I was alive.

Overwhelmed with gratitude, and determined to pay it forward, I decided to sign up for the ½ marathon through the Leukemia and Lymphoma Society’s Team in Training. I felt a particular affinity and attachment to you because you were responsible for discovering the drug Rituxan which was a key component to the chemotherapy regimen- that saved my life.

Team in training became my second family. My coaches and teammates quickly replaced my beloved medical team.  You were my team of cheerleaders- working on overdrive to bring me to yet another finish line- a finish line that would eventually lead me to my next chapter.

In less than 3 months I ran hundreds of miles, and raised over $19.000 for LLS. Since then- I have joined your advocacy committee, served as your honored hero, and premiered on our city’s buses and trains- to help spread the important work that you do.

I stand here tonight- overwhelmed with gratitude. I am grateful for your fever pitch screams and motivational speeches on Saturday mornings. I am grateful that you believed that my body and mind could handle the journey to the next finish line. And I am grateful for your commitment, research, and advocacy to rid the world of blood cancer.

I am not the hero- I am merely the fortunate recipient of your hard work.

And so tonight- I honor you. I am surrounded by a room full of heroes. And without you- I would not be here.

Thank you.

Thank you.

Thank you.