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.

 

A Chanukah Miracle

It was a year ago today that I decided to undergo fertility preservation at Northwestern University’s Oncofertility Consortium.

At the time of my initial diagnosis, when I heard those three words, I remember feeling completely helpless and out of control.

I was slowly being suffocated by the weight of cancer.

During what felt like a period of complete paralysis, I was desperately trying to find ways to regain a sense of normalcy, purpose and control. I wanted to be a part of the decision making process. I wanted to have a voice.

As a young adult facing a cancer diagnosis- I learned very quickly that my fertility may be significantly affected by chemotherapy.

While I knew that cancer was going to rob me of many things, I was unwilling to let this disease rob me of my ability to have children.

Before my official diagnosis and regimen were finalized, I had already started the paper work to preserve my fertility.

This decision, significantly affected the way I chose to fight cancer.
From the very beginning I was already thinking about life after cancer. Choosing to protect my fertility allowed me to hold on to hope- and without hope I would not have survived.

Over the last 12 months I have been involved in a very painful appeals process with my insurance company to try to prove that I needed and deserved these treatments.

Preserving my fertility was not a luxury-but a necessity.

The research was clear- there was a strong likelihood that my chemotherapy regimen would significantly and perhaps permanently damage my ovaries.
After months of fighting for my life, there was the possibility that I would be rendered sterile.

Having to repeatedly plead with my insurance company to consider my needs- was excruciating.

I was screaming – but no one was listening.

Two days ago I received the news that the initial decision was overturned- and that my fertility preservation would now be covered by insurance.

It was a Chanukah miracle.

Instead of retreating- I chose to scream louder. Instead of accepting defeat- I chose to push harder.

I share this piece of my cancer journey with you because we shouldn’t be whispering about fertility- but screaming about it. It’s outrageous to have to prove that these treatments are not a luxury but a necessity. It’s outrageous that young adult patients are not being told about their options when they are initially diagnosed or shortly thereafter. And its outrageous that there is a silent stigma attached to women that have no choice but to seek fertility options.

I can only hope that my story-will one day help the lives of other young adult cancer patients- who should be focusing their energy on fighting to live -as opposed to fighting to receive coverage.

It’s time to cause a commotion.
Its time to start educating.
It’s time to start mobilizing.

Who’s joining me?

.

The Scars that Lie Beneath.

As I had the scar removed that held the memories of the last 10 months, I came to the realization that it’s the scars that lie beneath the skin that cut the deepest and are the hardest to repair.

The surgeon did his best to slowly and methodically cut me open, and attempt to rewrite history- however my gapping wound instead revealed the heartache and pain that swells beneath the skin.

As I was sliced open and re-stitched, it became clear that my fight, my battle, my journey continues – this time with new challenges, surprises, and also blessings.

Last night I was informed that the chemotherapy regimen that saved my life has also attempted to rob me of my ability to have children.
The damage to my ovaries is extensive.
The outcome is not favorable.
I am now 30 years old and in menopause.

I have decided to write about this candidly because I don’t think there is enough awareness about the fertility risks associated with chemotherapy. Treating the entire person rather than only targeting the Cancer- is critical to the way a survivor fights, and the way a survivor rebuilds after treatment. The silence makes us feel ashamed-when we have nothing to be ashamed of.

There is a common misconception that when a Cancer survivor’s treatment ends- their life can then restart. Unfortunately, this journey does not stop and start from diagnosis to remission, but rather is continuous.

It’s not about winning or losing, succeeding or failing but rather the challenge is to find meaning in the suffering.

I have had my fertility taken, but I am not less of a woman.
I have been robbed repeatedly, but I am not damaged.
I have been tested and challenged, but I am not defeated.

Instead I believe that from tragedy comes great opportunity, and from suffering comes profound clarity.

While my ovaries may have been abruptly taken, I refuse to allow this disease, this experience to rob me from becoming a mother.

As Cancer continues to throw punches, I choose to fight harder.
As Cancer attempts to break me, I choose to rise above her.

My decision to go through fertility treatments shaped the way I fought against this disease and continues to provide me with hope that I will one day be the parent who is able to impart what it means to live a life full of gratitude.

I have been blessed with a set of parents whose hearts are filled with love, whose support is all encompassing, and who have set an example of how to manage the most difficult of circumstances. I hope to one- day lead by their example.

Until then,
I will continue to pick myself up, push back, fighter harder-and twist in spite of Cancer.

Northwestern’s Oncoferility Consortium- Gives Hope to Young Adults Surviving Cancer

For young adult patients (ages 18-40) who are in the prime of their life-a Cancer diagnosis can dramatically impact their trajectory in unique and specific ways.  This demographic in particular has the misfortune of having to consider how Cancer treatment wil affect their fertility.

Historically, the medical field has focused their efforts on treating the disease, and has not spent enough time considering the individual as a whole.  Young adult Cancer survivors who are about to undergo treatment deserve to know the facts, deserve to know their odds, deserve to know what life can look like after Cancer.

I would argue that understanding how your fertility will be affected, and what options are available, is just as important as understanding your Cancer diagnosis and course of treatment. For young adult survivors, it is critical that fertility be discussed during the initial conversations with your primary care physician and/or oncologist.

Northwestern University’s Oncofertility Consortium, spearheaded by the brilliant Teresa Woodruff, provides young adult Cancer patients with the necessary hope that there is life after Cancer.  Teresa and her team of experts are providing survivors with critical tools and resources for how to bring life into the world.

I am incredibly indebted to Northwestern University’s Oncofertility Consortium. I wholeheartedly believe that in learning about my risks and options, I was given the hope I needed to fight this disease.

I recently attended the Oncofertility Consortium’s 5- year gala where they premiered a short documentary showcasing their remarkable work.  Featured in the film are leading reproductive specialists, oncologists and patients who have chosen to take their fertility into their own hands.  It was an honor to be apart of this project ,and I feel incredibly grateful to be apart of this beautiful community.

To learn more about the Oncofertility Consortium’s work

http://oncofertility.northwestern.edu/media/roadmap-future-inquiry-discourse-and-innovation-oncofertility-consortium-0

 

If you are a young adult survivor (ages 18-44) and are within 3 years of diagnosis- please consider registering with Northwestern’s First Registry- a research study that is investigating the reproductive impact of cancer treatments on women.  To learn more go to http://blog.oncofertility.northwestern.edu/2011/09/introducing-the-first-fertility-registry-for-cancer-survivors/

A special thank you to Kristin Smith who helped guide me through this entire process. I do not know what I would have done without you. Thank you for your professionalism, your guidance, and your friendship.