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Friday, March 9, 2012

Patient Turned Advocate Promotes Awareness

John Turino was diagnosed with colon cancer in 1996. A South Jersey resident, John is married with an 18-year-old son and is chairperson of the tri-state chapter of the Colon Cancer Alliance.

My story begins on May 15, 1996. I was experiencing extreme pain on my left side. I was sent to a radiologist for a barium enema, and X-ray to look at my colon, but the liquid was unable to pass through. A tumor had blocked off the descending colon and broken the membrane. The CT scan confirmed that I had colon cancer.

I was devastated.

After trying for 10 years to have a child, my barely 3-year-old son was facing the possibility of being fatherless. For the first time in my life, at the age of 41, I was scared and alone.

You see, back in the 90s, the word "cancer" meant “death.” It was considered an elderly disease. No one ever talked about cancer. In fact, some people avoided me like the plague, thinking they could catch it from me. There was no support group I could join. There was no one to talk to about my experience, because no one knew what to expect. My wife, I'm sure, was experiencing this as well. She had no caregiver training and did not know how to deal with my cancer diagnosis.

The day of my surgery, I drove to the hospital with my wife. We grabbed each other's hands and silently cried as we looked together, ahead.

The surgery went very well. I stayed in intensive care for nine horrible days. When I got home, I had to heal for a couple of weeks before I started my weekly rounds of chemotherapy. I was relieved that I did not need radiation therapy.

I drove myself to and from the oncologist's office every Tuesday for a year. I was determined not to let my son grow up without a dad, and he came with me every trip. We'd go into the office and the first thing that hit me was this horrible odor. Every time I walked into the office for my treatment, I could never get past this odor. And every week, as they drew my blood for a white blood cell count, I was hoping mine was low, so that I did not have to have chemo that week. Each week, coming out of the office, I would get halfway to the car, vomit into the parking lot, close the door and drive off. I became very sick, but as soon as I started to recover, it was time for my next treatment.

Today, it has been almost 16 years that I have survived this disease. I still get a colonoscopy every five years to keep it in check, and the fear of cancer returning never goes away, no matter how many years go by or how strong I become.

Giving Back

About 150,000 people in the United States are diagnosed with colon cancer annually, making it one of the most common forms of cancer. Yet few people know much about it or are comfortable discussing it.

It starts as a growth, or polyp, in the colon or rectum. Some polyps can develop into cancer, but if detected in the early stages, colon cancer is 90 percent curable.

Most people are encouraged to begin screening by the age of 50. Besides colonoscopy, screening options include virtual colonoscopy, and flexible sigmoidoscopy.

Today, I have found a major way to give back and educate others about this disease.

I strive to create awareness of colon cancer through myriad programs, noting it remains the number-two cancer killer, behind lung cancer, even though colonoscopies and other screenings make it one of the most preventable types of cancer.

I am currently the chairperson of the tri-state chapter of the Colon Cancer Alliance, which encompasses New Jersey, Pennsylvania and Delaware. My goal in life is to help spread the word about colon cancer through the Colon Cancer Alliance and to reach as many people as I can.

Based in Washington, D.C., the Colon Cancer Alliance is a national patient advocacy group that strives to end the suffering caused by colorectal cancer through support, education and research.

The Colon Cancer Alliance’s signature programs include:
  • “Buddy” program: Designed to provide experienced listeners who have “been there” to support newly diagnosed patients
  • Regional seminars: Providing up-to-date information from top healthcare professionals; designed for new patients, advanced disease patients, survivors, caregivers, nurses and others
  • Connections online: Features include blogs, videos, personal pages, message boards and chat; opportunities to seek advice or provide data, updates to loved ones
  • Tributes page: Web pages can be created to memorialize or otherwise honor a friend, family member or loved one
  • Toll-free helpline: A chance to learn more about screening and treatment options and receive advice on treatment effects
  • Voices Volunteer program: An opportunity to allow advocates to use their voices to help the alliance succeed in its mission
  • “Undy” 5k run/walk: An untypical race highlighted by entrants in boxers and bloomers spreading the word about colorectal cancer.

The Philadelphia “Undy” is scheduled for Sept. 8, 2012. Registration for participants and teams is now open on the website, www.undy5000.org

This is the beginning of my journey to help those in need.

1 comment:

  1. Your story is very inspiring. I just lost a family member to cancer...she had two abdominal mass and what every person needs to understand is to always if you think something is not right...insist on your doctor doing more to find out the cause of your subtle symptoms...if he/she won't find another doctor. My family member had a history of a skin cancer which her doctor told her there was no need to worry about it anywhere else in her body because it was what they thought was a localized cancer. In actuality the cancer she had was not localized and by time she became unable to eat, that is what it took for them to do a CT scan, the tumor was inoperable because it had invaded her ascending abdominal aorta. So...if you feel something is not right...pursue until you get a satisfactory answer. Thank you for sharing your story and I pray God's blessing on you and your family for all the best. I will definitely check out the organization because no one should have to face this alone.

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