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Life Arts    H4'ed 11/11/12

Jenna Benn and Twist Out Cancer

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My guest today is self-described "Cancer Crushing Warrior Princess", Jenna Benn. Welcome to OpEdNews, Jenna. Why is fighting cancer such a personal issue for you?

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I think it is important to clarify that I do not describe myself as a Cancer Crushing Warrior Princess, however I do love that title. My dear friend, mentor, and yogi friend Becky Strauss came up with this name for me. Becky and I worked together throughout treatment. She helped me learn about the mind-body connection and I found a lot of strength from the warrior II yoga pose. The name essentially is a term of endearment.
I am also not sure if I would use the word fighting cancer as the heart of what I care most about. Language is incredibly personal for those touched by cancer. There were moments during my journey where I visualized it as a fight and other moments where it was more of a dance. I realize that for many people who never hear the words remission or cure, but rather are forced to live with cancer, the word fight may not exactly be the right fit for them as well.
In any event, raising awareness about cancer, and issues specifically pertaining to young adult cancers are a particular passion of mine. I think the psycho-social aspects of a cancer diagnosis are often ignored and for me, this is the heart of what I am most passionate about.

I stand corrected. Speaking of dance, you incorporated that into your personal cancer treatment regimen. Can you talk about it a bit?

I have always loved to dance and I spent a great deal of time during grade school, high school and college taking dance classes and performing. When I was diagnosed with cancer, I felt this need to hold on to my voice and spirit as I went through treatment. As I felt further and further betrayed by my body and no longer recognized it, dance was a way for me to reconnect and relearn this new body. It also was an outlet for me to be creative and to relieve stress. As I continued to write and delve into the issues I was grappling with, I started posting dance videos where I really let loose.
The twist was my dance of choice for a number of reason. The twist in many ways was a part of my narrative from the beginning. When I was officially diagnosed with Grey Zone Lymphoma, my oncologist told me that the disease had both characteristics of Hodgkins and Non-Hodgkins Lymphoma. My cancer was indecisive, and so I started visualizing it as a chocolate and vanilla twist frozen yogurt. Whenever I would go to get ice cream or frozen yogurt, I always had such a hard time deciding on which flavor that I would always choose the twist.
When I had completed round three of six rounds of intensive chemotherapy, I decided to put out a challenge to my readers where I videotaped myself doing the twist and asked who was joining me on the dance floor. At the time, I figured this was the right dance choice because the alternatives were too rigorous and I didn't have the energy or balance to execute them. So the twist became my dance of choice and it also became a metaphor for how I chose to get through cancer.

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outside Union Station, Chicago

How did your friends respond to the twist challenge?

They responded in ways I never anticipated. At the time, I don't think I really thought through what I was doing. Truthfully, I am not sure I really anticipated much of a response. To date, we have had over 30,000 people twist out cancer. While I was in treatment, I received hundreds of videos featuring thousands of people around the world twisting out cancer and joining me on the dance floor. The whole experience has been surreal.
Surreal, but in a good way, no? I understand that you have always been a very private person. But having cancer and being frank about it and your experience have put you much more out there. Has that been difficult for you?

On the one hand, being so public about my illness and the challenges I was facing as a young adult with a rare type of cancer made creating a system of support much easier. I felt the more that I shared, the more the world opened up. It was a real change for me as someone that historically has been quite private. I sincerely believe that through my openness and candid response to my diagnosis, my family, friends and supporters felt connected to me in a way that I never anticipated. I found that the relationships I was able to build and foster during the months when I was sick, were incredibly meaningful and profound. There was no room for b.s., our conversations centered around real issues. In some ways, cancer cut through all the small talk.
Now in this phase of my survivorship, I have to find a new comfort in what and how I share. I no longer feel the need to expose my life and my struggles in the way that I had earlier. The blog is now more a creative outlet and a platform for community building and advocacy as opposed to a necessary coping mechanism.
In addition, I am now engaged and I have to, of course, consider how much I want to publicize about my life. I have other people to consider and I sometimes have to think twice before I write. At the same time, the fact that the blog has a new role in my life I believe is a healthy thing. I think it's critical to listen to what feels right. I always said that I would write and continue documenting my journey for as long as it provided meaning and clarity in my life. It still is continuing to serve that purpose but it is no longer a necessity for me.

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Congratulations on your engagement, Jenna. That's exciting! Speaking of relationships and building a future, you did something very pro-active within several days of your initial diagnosis. Do you feel comfortable sharing that with our readers?

When I was first diagnosed with cancer, all that I could initially think about was how determined I was to live. I was diagnosed right around Christmas and many oncologists and surgeons were on vacation at the time, which meant it was difficult to plan next steps. My life was seemingly spinning out of control and I was determined to do whatever I could to try to reclaim some sense of control and normalcy. Thankfully, I found out early on that before starting treatment, I would need to consider fertility. I had no idea at the time that cancer treatment for young adults often comes with a whole new set of obstacles. Chemotherapy and radiation, unfortunately, can have a toxic effect on a young woman or man's fertility. Historically, oncologists and surgical oncologists were more interested in saving the patient's life than in worrying about life after cancer. In the last ten years, with advancements in fertility preservation, there has been a noticeable shift from treating solely cancer, but the entire cancer patient.
A few days after hearing those three words, I made the conscious decision to think about, and picture my life after cancer. During the holidays, when I was waiting for my scheduled biopsy, I booked an appointment with the oncofertility consortium, the country's leading fertility treatment center for cancer patients. I started all of the necessary paperwork to preserve my fertility before I had an official cancer diagnosis. By the time I learned I had a blood cancer, and more specifically Grey Zone Lymphoma, I was already learning about the options I had to preserve my fertility. Luckily, my disease, although aggressive and stage II, provided me with enough time to wait a month before starting treatment. I eventually went through a successful egg harvest and the following day started intense and invasive chemotherapy treatments.
To this day, I feel an overwhelming sense of gratitude for the oncofertility consortium. They were not only my first real entry into the cancer world, but they instilled a real sense of hope that not only would I be able to get through treatment, but that one day, I would be able to have children on my own terms. I cherish the relationships that I developed with the staff at the center, and look forward to exploring my options in the near future.
As expected, the chemotherapy regimen that I was on proved to be incredibly toxic to my ovaries. I have had a number of tests since treatment that have shown that my ovaries are no longer functioning. Although this is not an exact science, and there is always the possibility that I will eventually come out of menopause, I feel grateful for the fact that I was privileged to be able to take active steps to protect my fertility before treatment. It not only affected the way that I fought the disease, but it has exponentially affected the way I am currently living.
Doing the twist in the hospital to stave off the blues morphed into Twist Out Cancer. What is it, Jenna? What does it do? And who's it for?
Twist Out Cancer, in many ways, started from a place of loneliness and desperation. When I look back at the video that I posted doing the twist while in the throes of treatment, I had no idea that this would turn into something much bigger. Everything that has happened the last two years, evolved and developed organically. There was no long-term goal with any of this, rather I was just listening intently to what I needed and I found tremendous strength in calling on the community for support.
When I finished treatment, I felt this overwhelming need to give back in a meaningful way. I initially was asked to lead survivors in the twist at various functions and I found that the moving, bending and twisting in the face of such trauma and hardship was not only therapeutic but empowering. However twisting wasn't enough and I felt that I needed to turn my efforts into something bigger. After many discussions with good friends and mentors, we developed a support community...with a twist.
Twist Out Cancer leverages social media to help survivors and loved ones combat the feelings of isolation, loneliness, and helplessness that often accompany cancer diagnoses and treatment. It 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.
Survivors are 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.
I inherently believe that Twist Out Cancer has the power to affect how we fight and heal, and change the way our community provides support.
We launched the site on National Cancer Survivors Day this past June and the feedback has been tremendous. Not only have survivors gotten deeply involved but it has provided a lot of support for caregivers, family members and friends.
In the last few months, I have gone to various camps and college campuses where I share my story and have participants actively engage in the site. Through engaging the community in giving back, I truly believe we have the power to transform lives.
Twist Out Cancer has evolved organically the last few months into a movement that I never could have anticipated.
It has been a beautiful journey so far.
I love that Twist Out Cancer helps both the survivors and their community of loved ones, who themselves often have a very hard time getting through this. What haven't we talked about yet, Jenna?
I think the only part of my story thus far that has not been discussed are the challenges that arise after completing treatment.
When I completed treatment, I think there was the assumption that in time I would eventually be "back" to the person that I once was. I would eventually regain my footing and continue back on the path that I had been on previously. The reality, however, is quite different. I found that for months, I was looking for the shoes that I had left behind on December 20th, 2010. I was determined to regain my footing and follow in the footsteps that I had created in the life that I once knew. I very quickly realized that the time and effort I was putting into reacquainting myself with the person I once was, was in some ways denying the person that I now am.
While I believe there are aspects of my former self in this new existence, the challenge has been learning to balance what was with what is.
I not only had to negotiate the public's opinion of who they thought I was and who they thought I should be, with my own expectations, hopes and dreams. I had to get real with myself and realize that there are part of me that no longer exist.
And there are side effects, battle wounds, residual scars, some that are visible and easy to see, and others that lie beneath the skin. These markings are a part of my story, a part of my journey, a part of my twist on cancer.
My body and mind have endured months of warfare, and to have the expectation that I would be unchanged is simply unrealistic.
There are moments when I feel paralyzed by the idea that my cancer may return, there are moments when I go digging for lumps and bumps in my neck, and there are moments when I think about what it would be like to endure another cancer experience in this new set of shoes, with this new pair of eyes.
I think about how it would impact my current relationship, and how it would affect my family and close friends.
And then I remember that I cannot control what is and what will be, all I can do is control how I will respond.
I found a great coping strategy through twist, a strategy that is no longer about cancer, but is about how I choose to live my life.

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Thank you so much for talking with me, Jenna. It was a pleasure and a privilege. Good luck to you!

Thank you so much for your interest in this, Joan!
All photos: Liesl Diesel
Learn more at Twist Out Cancer website
How Twist Out Cancer Creates Digital Legacies
Have fun with some twist out cancer videos


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Joan Brunwasser is a co-founder of Citizens for Election Reform (CER) which since 2005 existed for the sole purpose of raising the public awareness of the critical need for election reform. Our goal: to restore fair, accurate, transparent, secure elections where votes are cast in private and counted in public. Because the problems with electronic (computerized) voting systems include a lack of (more...)

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