In 2010, cancer became the leading cause of death worldwide, and more than 28 million Americans live with the disease. A personal battle with testicular cancer inspired Todd Zessin to found LIVESTRONG Peoria, a chapter of Lance Armstrong’s national organization, in efforts to raise awareness and advocate for cancer research in the community. Zessin shared his survival story with iBi and discussed the process of bringing the LIVESTRONG movement to central Illinois.
When did you start LIVESTRONG Peoria and what is its mission?
LIVESTRONG Peoria began in the fall of 2008. Our mission is to educate young men about testicular cancer, raise awareness in our community, and advocate politically for additional cancer research and resources.
What moved you to join with the Lance Armstrong Foundation?
My cancer diagnosis came only a few years after Lance’s. The publicity and awareness he brought to testicular cancer during this time period was nothing short of amazing. I was researching on the LIVESTRONG website when I realized I wasn’t alone. I discovered a community of other young men battling cancer as well. The Lance Armstrong Foundation became my main source for information and support. Wanting to provide similar resources locally, it was evident that I didn’t need to recreate the wheel. Partnering with LIVESTRONG was a natural fit.
What did the process of starting a local chapter entail?
One day, surfing Facebook, I stumbled across another LIVESTRONG chapter. A LIVESTRONG leader in a different city had a great page and website created and I instantly knew this was something I wanted to champion. I had no idea of the level of commitment involved, but I have certainly been amazed by the impact our little organization has had locally.
Upon registering, LIVESTRONG leaders are asked to commit to the following:
a. Participate in two to four online/offline campaigns each year through LIVESTRONG Action, LIVESTRONG’s platform for collective action. An example of an online action would be adding one’s name to a petition and sending it to friends, asking them to do the same. An example of an offline action is sharing one’s personal cancer story and information about LIVESTRONG at a community gathering.
b. Host a LIVESTRONG Day event. LIVESTRONG Day is LIVESTRONG’s annual day to raise cancer awareness. Held on October 2nd, it brings people together all over the world to recognize the power of collective action in fighting the global cancer crisis.
c. Regularly report on activities. LIVESTRONG wants to highlight, support and evaluate what kinds of action leaders are taking.
What type of person joins LIVESTRONG Peoria—cancer survivors, patients, family members, etc.?
Cancer affects in some way, whether directly or indirectly, everyone we know. We either know someone who has gone through it, we may have battled it ourselves, or maybe we are just sympathetic to the cause. LIVESTRONG Peoria appeals to everyone and welcomes them all. Our focus is not so narrow to only appeal to one type of cancer or individual. I want to provide education and support to the young man quietly fighting a lonesome battle with testicular cancer the same way I want to support the spouses and friends of cancer patients. I also want to provide an opportunity for anyone who is willing to lend a helping hand. Cancer affects each of us differently, but make no mistake, we are all linked by it.
How many members do you have?
It is difficult to determine how many members LIVESTRONG Peoria has because our reach goes far beyond those who we simply register and have an email address for. We have a modest number of members on Facebook and those who have registered on our website. I don’t like to think of LIVESTRONG Peoria as a membership or something to join. Rather, when I speak at an engagement or promote an event, I am always amazed at the genuine interest and willingness to contribute to our effort. Hundreds, possibly thousands, are aware of our little organization and I am continually inspired by the outpouring of support.
How is LIVESTRONG Peoria funded?
LIVESTRONG Peoria does not receive any funding from the Lance Armstrong Foundation, and the time commitment and work performed by our organization is volunteered. While raising money is not a focus, we are fortunate to live in a generous community. I have asked in the past for financial assistance to promote events and have not been let down.
What has the group accomplished so far?
Our greatest accomplishment so far came on October 2, 2010, when LIVESTRONG Peoria partnered with Be The Match Registry to host our first annual marrow registration. Every day, thousands of patients with leukemia and other life-threatening diseases search for a marrow donor who can make their transplant possible. Seventy percent will not find a match in their family and turn to Be The Match, the largest and most diverse registry of volunteer marrow donors in the world. It touches me greatly to know we registered a few marrow donors, created awareness for Be The Match, and I’m certain on that day we saved a few lives.
What are your goals for the future?
Moving forward, I have three main goals, the first of which is to continue developing an awareness seminar focused on educating high-school-aged young men on the risks of testicular cancer and the many resources available to them. Second, I would like LIVESTRONG Peoria to continue providing cancer information and support in the Peoria area through speaking opportunities and hosting events. Lastly, I would like to grow LIVESTRONG Peoria into an effective lobbying coalition on cancer funding that will enable the community to enhance policymakers’ awareness of the need for substantial increases in essential cancer programs.
Anything else you’d like to add?
I am truly thankful for the support of my wife, Michelle. Together we have created something very special. I have wonderful friends and co-workers at Pearl Technology and am thankful for the support they have provided. The East Peoria Chamber of Commerce and Mayor Mingus have been wonderful supporters and continue to offer assistance whenever possible. Web Tech Services graciously volunteered to create and host our website. Many other businesses and individuals have contributed, and their generosity exemplifies the type of community we live in. The success of LIVESTRONG Peoria comes from the people uniquely affected by cancer and their kind hearts and willingness to make a difference. There are 28 million cancer survivors worldwide. None of them should have to face this disease alone. You can help by supporting LIVESTRONG Peoria or the Lance Armstrong Foundation. iBi
For more information, visit livestrongpeoria.org.
» MY CANCER STORY
by Todd Zessin
Like most men in their late 20s or early 30s, I was taking full advantage of my youth and felt invincible against the world around me. I was prepared to handle whatever pitch life threw me. I had recently finished graduate school, traveled all over Europe, begun a serious relationship and started a new career. And then I was hit by a curveball that completely changed the direction of my life forever.
It didn’t happen like one would see in a movie. In fact, the story opened with very little drama. My testicles hurt, so I went to the doctor. The physician at the walk-in clinic realized the obvious—they were swollen. He prescribed an anti-inflammatory and sent me on my way. Seriously, on this day I made a decision that may have saved my life. I decided I knew more about my testicles than this doctor did. Something was wrong. I didn’t know what it was, and while I would normally follow a physician’s instruction, I knew in my heart this wasn’t the end of my journey.
I immediately climbed into my car and drove myself to another clinic for a second opinion. I could read this physician’s concern on his face. He expressed a general interest and concern, and while not convinced there was anything wrong other than an infection and general swelling, he did refer me to a radiologist, just to be sure.
Nervously, I laid there exposed in an unfamiliar room alone. The radiologist entered and explained what he would be looking for. He pointed out to me on the monitor a very tiny, barely noticeable black spot. He and his technology were able to detect a five-millimeter speck on my left testicle. “This could be something, I’m just not sure,” he said, and then called in a doctor to look at the spot. I was referred to a urologist for further investigation. The physicians were extremely thorough in their examination and diagnosed seminomas, which are responsible for 50 percent of all testicular cancer and very receptive to treatment.
When the tests came back positive for testicular cancer, things moved swiftly. Results indicated the best and it had not spread as it generally does if gone undetected. Within days, I was scheduled for surgery to remove my testicle. Within a week, it actually happened. The surgeons had removed cancer from my body forever.
The sample was sent to Indiana University, the same place as Lance Armstrong’s, for diagnosis. These were the longest two weeks ever. Thoughts run through one’s mind when faced with mortality one should never face alone. Obviously, one thinks about all the wonderful choices in life he will make if he finds his way through this and the improved person he will become. Just as one contemplates life, one also contemplates death. I didn’t have it in me to broach this subject with anyone, so I explored the possibilities of death alone. I wanted to lean on my family for support, but they lived a thousand miles away. I could lean on my friends, but guys don’t talk to each other about their testicles or mortality. And since I am a guy who generally can’t tolerate those who complain, I talked about it as infrequently as possible in my relationship. I didn’t realize it at the time, but I was going through this horrible situation very, very alone.
Ultimately, additional CT scans revealed the best scenario and I was declared cancer-free. Actually, I feel fortunate. Cancer seems to attack the people who deserve it the least. Cancer has no conscience. I escaped with a painful surgery, life with one testicle and some psychological wounds which have healed well over time. Others are generally not so lucky.
Cancer, specifically testicular cancer, is mean. It attacks young men who have done nothing to provoke it. This disease does not choose the smoker, the heavy drinker or the overweight. One can be healthy, happy and have a stable full of friends, and one day a life is changed forever. Most young men feel inherently invincible and testicular cancer is the furthest thing from their minds. LIVESTRONG Peoria will ensure that no one needlessly battles this disease and its lingering effects alone. iBi