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.

 

Let’s Kick Out Cancer!

Join Twist Out Cancer and the Leukemia and Lymphoma Society in “Kicking Out Cancer!”

May 15, 2012

7:00 PM-9:00 PM

Raiders FC U17 Premier vs. Galaxy SC 94/95 Blue (Midwest Regional League match)

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

$5 admission

$2 for children 12 and under

To Register Online go to http://kick-out-cancer.eventbrite.com/

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

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.

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.

Watch Jenna and Noreen Twist Out Cancer

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

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

The Leukemia and Lymphoma Society Ad Campaign

During the months that I was tied up, strapped down, locked in- I decided to train for a 1/2 marathon in spite of having cancer.  As my life was twisting out of control- running became my refuge. 

 Running allowed me to connect with a body that I no longer understood and felt betrayed by.

Running provided me with the clarity and focus I needed to navigate my fears.

Running connected me with the Leukemia and Lymphoma Society’s Team in Training- a dynamic and vivacious group of cheerleaders and supporters who are determined to raise money and awareness about blood cancer. 

It is an honor and privilege to be apart of the Leukemia and Lymphoma Society’s most recent ad campaign.

Check out tomorrow’s red eye and the CTA buses and trains this March for the latest ad.

Thank you LLS and TNT for the opportunity.

Your love and support throughout this journey has profoundly affected my fight and my ability to heal.  

Hopes and Dreams and Everything in Between

 In 2010 and 2011 when I was fighting cancer, I made a list of hopes and dreams that I hoped to achieve after I completed treatment and started to rebuild my life.

As I approach the New Year, I am again reminded of the importance of evaluating where I was, where I am, and where I would like to be.

Here was my list for 2011 (in no particular order) -with status updates.

  1. Get into remission- Completed/a constant work in progress.
  2. Remember what it feels like to be tied up and to eventually become untied- Completed/In Progress.
  3. Run in the middle of a rain storm with all my clothes on. Completed
  4. Put my toes in the sand. Completed
  5. Drink a glass of wine while watching the sunset over the ocean-Completed
  6. Travel with Neely- Pending
  7. Train and complete a ½ marathon- Completed
  8.  Raise over $18,000 for Leukemia and Lymphoma Society-Completed
  9.  Meet my Angel Ann in a foreign city- Pending
  10.  Start my own non-profit- Completed
  11.  Become a regular contributor for a major publication- Completed
  12.  Host a dance party for all my family and friends to celebrate life- Completed
  13. Travel to Steamboat Colorado and revisit the hikes I struggled to finish when my body was being ravaged by cancer. Completed
  14. Eat healthy every day (with some room for mistakes)- In Progress
  15. Remember how being sick feels- In Progress
  16. Thank G-d every day- In Progress
  17. Express my gratitude frequently and in meaningful ways- In Progress.
  18. Find love again- A Constant Work in Progress
  19. Dance every day- In Progress
  20.  Sing every day- In Progress
  21. Be thankful for waking up- In Progress
  22. Be thankful for falling asleep- In Progress
  23. To heal- A Constant Work In Progress

And here is my list of Hopes and Dreams for 2012 (which include all the points that are in progress from the list above).

  1. To appreciate what it means to wiggle my toes
  2. To feel challenged emotionally, intellectually, and spiritually.
  3. To find new ways to give.
  4. To nurture the relationships I have- and be open to unexpected new ones.
  5. To share what it means to see in hyper-color.
  6. To remember life’s fragility and continuously celebrate a life elevated.
  7. To take risks -but not act impulsively.
  8. To confront my fears head on, and remember that I have a tool kit and a community of cheerleaders that can help navigate future challenges.
  9. To capture moments with a lens, but not at the cost of being present.
  10. To live mindfully.
  11. To find meaning in suffering.
  12. To look for opportunities that will continue to add to my feelings of fulfillment.
  13. To plan but not at the cost of spontaneity.
  14. To dream big.
  15. To love wholeheartedly.
  16. To remember that the jitterbug is just as meaningful as a good old fashion slow dance.
  17. To remember it’s ok to tiptoe.
  18. To remind my family and friends how much they mean to me.
  19. To venture outside of my comfort zone.
  20. To remember the value of saying I am sorry.
  21. To continue to nurture the communication between my mind and body.
  22. To learn, accept and celebrate this new body.
  23. To remember the power of twisting. 

Here’s to a year filled with hopes and dreams- and everything in between.

 Happy New Year.

Bending, Twisting, Moving.

This past saturday, nearly 50 women attended a 90-minute Zumba-thon to raise money and awareness for the Leukemia and Lymphoma Society (LLS).  As LLS’s honored winter hero I have had the privilege of meeting remarkable individuals who are deeply invested in finding a cure for Blood Cancer. Thank you to all the women that woke up early, checked their shame at the door, and let it all hang out!  This group raised $880 and had a great time doing it.

Because of you, because of your commitment, because of your dedication, one day we will find a cure.

But until then, we will bend, move, and twist

because we can

because we should

because we must.

Thank you for moving with me- I was in turn- deeply moved.

Image

Twisting into my 3 month checkup

It’s been 3.5 months since my last treatment.

As a survivor I need to be checked by my oncologist Dr. Gordon every 3 months during the 1st two years of survivorship.

I woke up feeling a bit twisty- so I decided to twist it out.

Here’s to having nerves and moving with them, and  through them.

[youtube=http://www.youtube.com/watch?v=uirroPu9MAk&feature=share]

Why I run.

Training for the Chicago 1/2 marathon is a mental, physical and emotional challenge.

Nearly every time I lace up my shoes, and put on my bright purple Leukemia and Lymphoma Team in Training jersey, I find myself contending with unexpected emotions.  It starts slowly.  First there is the growing knot in the back of my throat, then there is the quivering lip that slowly intensifies, and then there are the tears- which flow uncontrollably.

Sometimes this process begins as I am leaving the house, and other times it happens as I am entering the beautiful lake shore path- where I join the sea of runners who are  committed to moving because they can, because they should, because they must.

By the time I make it to Wilson Beach to meet the other members of my team, I have usually had a good, deep, and heartfelt cry. This emotional ritual is perhaps a reminder of how lucky I feel, of how blessed I am, and how “blucked” I continue to be.

On the longer runs when I am convinced my body can’t handle the pounding, can’t handle the stress, can’t handle the heat, I am reminded of what it was like to be tied up, confined, unable to get out of bed, climb a fight of stairs, or walk around the block.

On the days when I am searching for motivation- I remember what it felt like to be trapped on floor 16, staring aimlessly at the lakefront path- wishing, hoping, praying that I could join the rest of the world and move with them.

I run because I can, because I should, because I must.

I run because I want to cross yet another finish line.

I run because I am deeply committed to my health.

I run because it helps me manage my fear that Cancer will return.

I run because it minimizes my side affects.

I run because the training reminds me of my fight with Cancer.

I run because others cannot.

I run because it reminds me that I am alive.

I feel incredibly honored and priveledged to be the Team in Training’s Honored Hero for the Winter Season. If you are interested in participating in a triathalon, marathon, or 1/2 marathon please contact me.