Blood Sweat and Tears- Why I Ride.

On September 29th I was asked by the Leukemia and Lymphoma Society to share my story to help inspire a  group of 47 Team in Training members who had trained for months to complete a century ride and raise money to end blood cancer.

Here is my speech from that night. Every time I share my story-I feel as if the world opens up. Through sharing that night I met Roger- another blood cancer survivor who I simply cannot stop thinking about. My next entry will be devoted to him.

 

Inspirational Dinner Speech

It is with sincere gratitude, admiration and respect that I stand before you tonight to congratulate you on making it this far.  You have so much to be proud of,.

Your early morning wakeups, countless hours on the saddle, and post ride muscle aches and pains will all seem worth it tomorrow morning.

 

Tomorrow is simply your reward. It is not as much about crossing that finish line, as acknowledging the journey you all committed to and have been apart of the last couple of months.  Enjoy every pedal, every mile, every moment- as tomorrow is truly a celebration.

As we head into tomorrows ride I think its important for all of us to remember why we are here. When I look around the room, at these beautiful faces, I am aware that many of you have been directly touched by cancer. Some of you are valiant and brave survivors, some of you are heroic caregivers, and some of you are the critical friends and family members of those that that have survived, those that are fighting and those that have passed.

There is an undeniable heaviness in the room because we carry their stories and their memories-with us today, tomorrow and always.

They are our motivation, they are the reason we are here, they are the reason we will continue to fight, give back and cross that finish line.

As we enter tomorrow’s ride, carrying our loved ones on our backs, perhaps you can also make room for me.

On December 20, 2010 at the age of 29, I was told I had cancer.

I will never forget the out of body experience that ensued when I heard those three words.

With just three words, I was robbed of my innocence and forced to contend with my mortality.

I had no idea how to navigate and exist in this new chaotic, terrifying, and uncertain state of being.

The scans confirmed 3 large and aggressive tumors  resting on my heart, my lungs and in my neck. After a series of advanced tests, I was officially diagnosed with Grey Zone Lymphoma, a rare blood cancer that affects less than 300 people in the United States. I was quite literally one in a million.

My life after diagnosis moved at lightning speed. I underwent fertility treatments, countless surgeries, scans, and then started a very aggressive chemotherapy regimen called R-EPOCh.  My regimen required 6 rounds of 5- day in patient hospitalizations, where I received 120 hours of continuous chemotherapy.

During the 720 hours of chemotherapy where I was hospitalized, hooked up, and locked in, I had to contend with the volatile environement around me.As a blood cancer patient I was often put on a floor that not only treated blood cancers but also was the final stop for palliative patients.  I quickly had to adjust to the fact  that while I was desperately fighting for my life, my neighbors to my left and right were making peace with theirs. The sadness and heaviness that surrounded me was the motivation for me to get on the bike.

On floor 16 at Prentice Hospital, there was a dated stationary bike that never was in use. During every round of treatment in the hospital, I made a pact with myself to ride 18 miles a day for as many days as I could tolerate. With chemotherapy pumping through my veins,  I pedaled faster and faster, hoping to one day join you here and now.

Biking became the mechanism that allowed me to process my feelings, escape from my reality, and reconnect with a body that I felt betrayed by.   It gave me strength, it gave me clarity, and it gave me a purpose.

I stand here before you today, 21 months since diagnosis, 19 months since remission, with no signs of disease.

Tomorrow I will remember what it felt like to be locked in, tied up, strapped down. Tomorrow I will remember what it felt like to bike 18 miles with poison running through my veins.

Tomorrow I will remember what it felt like to so desperately want to join you on that bike path.

Tomorrow I bike for you- because you are responsible for saving me.

Thank you for your commitment to raising money for the Leukemia and Lymphoma Society. There is truly no better organization committed to eradicating blood cancer.

Thank you.

Thank you.

Thank you.

 

 

 

Filling Your Shoes

It was June 2011.

I was finally untied, unlocked, let go- from the ward, the routine, and the heaviness of cancer treatment.

I was starting to emerge from the shadows-starting to find my rhythm- starting to find my footing.

There was only one problem- I couldn’t find my shoes.

7 months earlier, when I heard the words “you have cancer,” I unwillingly and unknowingly took off so fast-that my shoes were left behind.

Once I had completed  treatment- was given a clean bill of health-and finally released-I made it my mission to find those shoes.

I wrote about my efforts- I documented my failed attempts-and I opened up about my frustrations.

2 complete strangers- a mother and a daughter-read about my plight, and decided to create a pair of adorned flip flops that were noticeably  brighter, perfectly bedazzled- and just the right fit.

All of my failed attempts to pick up where i had left off- led me to exactly where I was supposed to be.

This pair of strangers,  gently informed me that it was superfluous to continue searching for the person I was once was, and that it was time to embrace who I had since become.

Over the last 15 months, I have been working hard to mourn my former self- and embrace who I am today.

Tonight, on September 21st, I was yet again given a new pair of shoes, destined to take me in a new direction, intended to lead me in a new dance.

Robert Piercy was a dancer. Diagnosed with Leukemia 7 years ago, he chose to find meaning in his suffering, embraced the uncertainty of his own mortality, and thereby lived differently. During this time, he noticeably held his loved ones tight, used his experiences to fuel his advocacy, and chose to dance in the rain- in the midst of a thunderstorm.

Tonight at the Leukemia and Lymphoma Society’s Celebration of Life Dinner, Robert Piercy’s family presented me with the “Dancing in the Rain Award.”

As his father gave a heartfelt speech, describing his son’s beautiful nature- all I could picture was Robert Piercy’s shoes.

They were tall, polished, and over-sized.

My feet slipped right in but I was quickly overwhelmed by the space.

When you left us, we were left with your empty space- a space that is impossible to fill- and impossible to forget.

How could I possibly fill your shoes?

How could I possibly walk in your footsteps?

And so it seems, a year later- I am still agonizing over shoes.

This time however, it is not about trying to find the shoes I left behind in December 2010, but rather it is about learning how to walk, learning how to run, and learning how to dance- in your  shoes.

They may not be a perfect fit, and I may not fully understand the road you traveled- but I assure you, it is your  shoes that will lead me to my next destination- and it is your shoes that will lead me in this dance.

With love and gratitude- may your memory always be a blessing.

And to the beautiful Pickering Family and Leukemia and Lymphoma Society- I am humbled and grateful for your honor.  Thank you for believing in me.

 

 

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

1/2 Way- A Special Appeal for the Leukemia and Lymphoma Winter Team in Training.

So here you are.
½ way.
½ way through training, ½ way to your fundraising goal, ½ way to the finish line.

You want to stop- but you can’t.
You want to quit, but you won’t.

You can’t stop because you are fighting for people like me- who are hoping, wishing, praying for more years, days, and moments.

You won’t quit because there are too many of us depending on you, needing you, hoping that you will be able to finish what we are unable to start.

You have come so far -and we are so grateful.

Your commitment to raising money and awareness for the Leukemia and Lymphoma Society is not only saving lives like mine, but is giving hope to the countless of people that are touched by blood Cancer.

As you dig deep to find the strength to continue logging the miles, continue raising money, continue working towards that finish line- know that you are providing us with the hope we need to continue fighting. You are making us believe that we are stronger today than yesterday but not as strong as we will be tomorrow. You are convincing us that one day, there will be a world without Cancer.

But until then, we will train because we can, because we should, because we must.
We will run, cycle, bend and twist because others cannot.
We will move because it reminds us that we are alive.

Thank you.

To View Team in Training’s Newsletter:
http://view.lls-email.org/?j=fe5d16787160037b7517&m=fefc15707d6c06&ls=fdfb1c787562047f77107271&l=fe7f11797d6d0c7e73&s=fe2916757d650375741476&jb=ffcf14&ju=fe2a16747c620478761272