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.

 

Stupid Cancer Radio Show

Did you miss tonight’s episode of Stupid Cancer?

If so- not to worry! Check out the latest episode featuring yours truly, Hans Ruffer ( Young Adult Survivor of Stomach Cancer, Celebrity Chef, Next Food Network Star) and Matthew Farber, Director of the Economics and Public Policy Association of Community Cancer Centers.

To listen click here:

http://www.blogtalkradio.com/stupidcancershow/2011/11/15/stirring-up-trouble

I am featured around  the 11 minute mark.

Thank you Matthew Zachary, Lisa Bernhard and Kenny Kane for the opportunity.

>Questions for Dr. Leo Gordon- Also Known As The Man Who Will Save My Life

>

In anticipation of tomorrow’s meeting I have compiled a list of questions that I hope will help provide insight into my illness.



1.    Type, Stage, Prognosis?
2.
     How fast moving is this cancer? If we wait 2 weeks am I putting myself at risk?
3.
     How long have I been walking around with this?
4.
     What is the average length of time for treatment?
5.
     When do you determine when to radiate? What are the long term affects of radiation?
6.
     What is the treatment regimen? What is the format? 1 week on, 2 weeks off?
7.
     How will the Chemo regimen that you put me on in your opinion affect my fertility?
8.
     Do you want me to have a port?
9.
     Will I have a bone marrow biopsy? Can I be put to sleep for this procedure?
10.  What other surgical procedures if any do you anticipate me having?
11.  
 What are the side effects I can expect to experience from treatment?
12.  
 How does chemo affect my immune system? Will I need to avoid public spaces? Are there certain activities I need to abstain from?
13.
Does Chemo affect your libido? Are there sexual side effects I should be aware of. Are these temporary or permanent?
14.
What can I do now to help ease my symptoms? Headaches/fatigue/weakness?
15.
Will chemo affect my symptoms? Will I get relief from them through treatment?
16.
How much sleep should I be getting?
17.
Can I still work?
18.
Should I be exercising?
19.
Are there foods I should be eating or avoiding?
20.
Should I be abstaining from alcohol?
21.
When do most patients lose their hair?
22.
Do most shave before they start chemo?
23.
What are follow up visits like?
24.
What types of procedures are required during follow-ups
25.
How often do I get a pet scan
26.
Are there other tests or procedures to tell if treatment is working?
27.
What research has been done on how this is contracted?
28.
Is Neely at risk for getting this?
29.
What is the rate of reoccurrence? How likely am I to develop another form of Cancer?
30.
What types of support groups are offered for patients, family, friends?
31.
Will I ever be able to donate blood?
32.
Will I ever be able to donate eggs?



      What am I missing??? 
      Also- can someone explain to me how exactly I got on this crazy Cancer train????