Ethan Zohn Advocates for Advancements in Cancer Research
Advocacy The “Survivor: Africa” winner opens up about his trying battle with lymphoma and shares tips for men, women and families who have recently been diagnosed.
Mediaplanet: When did you find out you were diagnosed with CD20+ Hodgkins lymphoma?
Ethan Zohn: As a patient, it’s really hard to articulate what it feels like to be seriously ill. It pays to have a positive outlook but when your team of doctors try multiple ways of healing that don’t work, you panic. You lose hope. All I craved was survival. This is when I prayed — I prayed for a silver lining, ray of light, glimmer of hope, a miracle. And you know what a miracle looks like to cancer patients? Successful research and new drugs. This is the critical piece of the puzzle that I’m really trying to communicate to everyone. Cancer patients are desperate. We are literally waiting every minute of every day for some life saving breakthrough.
When I relapsed, at that very moment in time, this new smart targeted therapy emerged on the market and was available for a select group of people in my exact situation. I thought to myself how lucky I was. Think about it — who is sitting in a lab working on a drug that will help some kid who was chemo resistant, had the maximum dose of radiation, failed an auto transplant and relapsed again? How specific is that?
This got the cancer into remission again and I proceeded to get another stem cell transplant, this time an allogeneic, using my brother Lee as the donor. I’m one of the lucky ones. It was and still is one of the most horrible experiences of my life and I live in fear that I may relapse again. There are times I want to give up. On the flip side, to understand that science is on my side and has given me the confidence and courage to fight like hell and stay alive for as long as I can.
MP: What was it like to go through such a serious condition while in the limelight as a recent winner of “Survivor: Africa?”
EZ: At first I struggled with the decision to take my battle public. It is a very private, scary, lonely, angry, ugly time and I didn't know what would happen if I chose to open my life up to complete strangers once again. But there was a moment that changed everything. I walked into a waiting room for my third round of chemo, and what punched me in the stomach and still does every single time, is that the waiting room is always full. There are so many people there. Always. And we sit like strangers, yet are so connected by this horrible situation.
Then my mom and I saw a woman break down as she watched her 4-year-old child be whisked away by a nurse. My mom said to this complete stranger, “That’s my son over there. He has cancer too.” They comforted each other, shared that moment: the personal touch, the warmth of another human being.
I couldn’t just sit back and let it happen. It took me four months to get diagnosed, and I didn’t want to see that happen to others. I went straight to People magazine to tell the world. I realized that the details of my life had the power to comfort others. The organizations, research, clinical trials, fertility, access to accurate information, stem cell donor database, caretakers, survivorship, insurance — this list will go on because cancer is the public health crisis of our generation.
When I was 14 years old, cancer came into my home and took my father. Then it tried to take me. All I wanted to do was to curl up into a ball and hide in my room. My mom, two brothers, friends from school, my teammates, and the cancer community reached out and embraced me. These people stood beside me and gave me strength. They reinforced my values in a time when I felt like I was alone. But it’s those actions and the raw generosity and willingness to help that make this journey more manageable.
MP: How has fighting cancer influenced your perseverance and changed the way you view life?
EZ: Now that I’ve survived, I have decided to live the rest of my life by making sure to never let a crisis to go to waste because it's an opportunity to do important things. For me that means, committing myself to this cause, doing everything in my power to make sure someone else doesn’t have to go through the same crap I went through.
This most recent experience of being a survivor reminds me of this one absolute truth: with all our differences—old or young, man or woman, Red Sox or Yankees—we all have one thing in common. We’re all survivors on this planet for just a short time. But it’s not about how or when you leave this world, it’s what you do to make the most of each day and of each crisis while we’re here.
MP: What advice can you give readers who may be supporting someone or may themselves be fighting blood cancer?
EZ: Nothing is more empowering than the truth. In supporting a fighter, be truthful with them about your feelings and thoughts — fear, love, happiness, sadness, questions, and perceptions. Often the thoughts and feelings a supporter is experiencing are similar to that of the fighter. Nothing creates comfort and confidence more than knowing one isn't alone in facing a life challenge. The same goes for the fighter. There are no benefits to "manning up." Hiding the truth is only additional stress one doesn't need.
Cancer is as much mental as it is physical. One must believe in their course of treatment in addition to taking good care of their body. The negative patients in the chemo suite often seem to do worse in the long run or have a more difficult time during treatment. Being present in the moment and keeping a positive outlook allows for one to more effectively absorb complications during treatment. Find activities you can do while in treatment to help keep you positive.
As a supporter, think of ways to help the fighter continue doing what they enjoy. In today’s world, treatment is less restrictive and there are countless services who specialize in getting cancer patients out of the hospital and going fly fishing, doing plain-air art or simply hitting the gym. Research shows that exercise and activity helps with recovery and survival rate. Do whatever it takes to continue enjoying life, regardless of cancers intrusion.
For those who are battling their own cancer, my advice is to take control over the small things that you can still control. You may have cancer, but you still have choices. Making the right choices can impact how well you respond to treatments and your overall prognosis. Talk to the experts about dietary choices and approved physical activity that can also improve your overall sense of well-being. It’s easy to be blinded by the enormity of a diagnosis. But don’t forget to celebrate the small victories along the way and embrace the good days.
MP: What is the most important thing you would stress to readers about advocacy for blood cancer awareness?
EZ: Every single act of involvement and advocacy matters. The most powerful way for the cancer community to create awareness is to share your story with others. Society can mitigate their risks of developing cancer, but we can't avoid it altogether. By sharing our stories we are creating a social network which is disseminating what symptoms really look or feel like, advocating for our friends to not skip their annual physical and to not ignore what their gut is telling them with respect to personal health.
While science is realizing amazing advancements in the treatment and prevention of cancer, the most effective tool is having a society that is aware of what cancer truly looks and feels like on a personal level. This awareness will lead to personal preventative strategies and early detection for individuals. After all, cancer doesn't care about family history, personal fitness and diet.
MP: How would you urge readers to get involved?
EZ: Lead by example. If you haven't had cancer, live a life that minimizes the odds of developing cancer so others can learn from example. Eat, sleep, exercise and live well. If you already have or had cancer, leverage the experience and the awareness you develop in a positive way. Have gratitude for the life you have lived, live your new lease on life as you see fit and come from a place of support and experience to others facing the challenge.
There are 14.5 million cancer patients and survivors in the U.S. that can use help in some capacity. Many of the organizations who are supporting this community are underfunded and not realizing their full potential. The beauty is most organizations have a narrow focus and can insure that your time, energy and money are maximized with respect to making a positive impact on the cancer community. People think you need to have deep pockets and a fat wallet to get involved and make a difference. The truth is there are a number of opportunities available that can help. Talk to one of your local chapters and see how you can get involved. Volunteers are always needed to make some of these organizations operate effectively. Those volunteer efforts are every bit as important as the large dollar donation. Anyone and everyone truly can me a difference.