“My Voice” by Keith Kohn

Keith Kohn - 'Survivor'

I started this bumpy ride a bit more than two years ago when I was 47 years old, and it has helped shape who I am today at 49.

In a good way.

No, being diagnosed with cancer of the esophagus – one of the fastest-growing forms of the disease – was not a good thing. Especially two years ago. I was a wreck back then. I’d just been on a two-week driving vacation from Florida to Yellowstone National Park and back, and while away I kept having difficulties swallowing my food and sometimes couldn’t keep food down. I chalked it up to bad food on the road, but the symptoms continued once I got home. Soon after the trip my mother was hospitalized with complications following open-heart surgery. As she fell deeper and deeper into her pulmonary problems, I resisted visiting a doctor until my wife, Catherine, forced me to make an appointment.  (Long story short, my doc sent me to a gastroenterologist who discovered a large mass at the base of my esophagus. A biopsy revealed it was cancer, and in what is an almost haze-like recollection I saw my oncologist and radio oncologist and began treatments within a week.)  I didn’t want to tell my mom I’d just been diagnosed with what was at the time practically a death sentence. So I’d visit her – chemo pump at my hip – wearing a hat so she wouldn’t see my bald head. There were times I couldn’t visit her because of my radiation treatments. She didn’t notice because she was unconscious for much of her hospitalization.

But. in the end,  it was good for me. Here’s why: I am stronger both mentally and physically.

I’m healthier now than I was pre-cancer, after losing about 75 pounds and then regaining only about 20 of those. (I tell people I love the results but I would not recommend the diet program!)

I won’t call myself fearless, but it takes a lot to disturb me now. I have learned to let the little things that used to bug me slide on by, and big worries, like job security, just don’t seem so big anymore. Everything in my life has more perspective. I am so much more appreciative of my surroundings, such as my family, my community and my friends. It felt great, for example, to donate blood a month ago – for the first time since my treatments ended.

I created a blog (CancerVivor.blogspot.com) to educate people about esophageal cancer and how to avoid it. I’ve counseled other cancer patients. I’ve talked friends and relatives into having endoscopic exams after they complained of gastric symptoms.

I usually tell people my story, the one above – plus how I got there. I got there by eating too much, and by eating too much spicy stuff. I also had an undiagnosed hiatal hernia that increased my risk. Heartburn and acid reflux got me into trouble. So when the heartburn and reflux, which I treated with the state-of-the art meds of the time (Rolaids and Tums) I didn’t complain. But what I should have done was gone to the doctor, complained about the acid stomach, mentioned when it went away. Because when it went away, I was experiencing what is called Barrett’s Esophagus. It’s a condition in which the esophagus is pre-cancerous, taking on the properties of the stomach lining to protect itself, but opening itself up to cancerous tumors. That’s the story I preach as often as someone will listen. It’s the lesson I hope everyone gets today.

Doctors can be a pain, but they are your friends. They can save your life. My docs, John Pfeiffer, my family doctor, along with specialists Phillip Styne, Lee Zehngebot, David Diamond and Joe Boyer, saved my life.  Thankfully, Styne, the gastro doc, knew that Zehngebot and Diamond, the oncologist and radio-oncologist, respectively, had just taken part in a study led by a team with the Minnie Pearl Cancer Research Network out of Nashville, Tenn., that doubled the potential to survive – from about 13 percent of all patients to more than 30 percent. So while I was not doomed to die with certainty, I only had a one in three chance to survive if you watch the stats. Dr. Diamond gave me a 50-50 chance because of my age and general health. Not too shabby.

So I went with it. I remained focused. I stayed positive. I ate as often as I could and tried hard as possible to hold it down. I walked a daughter down the aisle at her wedding, with my mom in the audience (and by then aware of my condition and her own).
After the treatments and “cooling-off” period I underwent surgery at the hands of Dr. Boyer. He said it’s even more complex an operation than heart surgery. Yipes!  But it worked and I woke up from the anesthesia.

Pain followed, for weeks and weeks. Slowly I regrouped and recovered.

I still have to have CT scans regularly. And Dr. Styne is treating me with Botox endoscopically every four to six months to help my re-formed and much smaller stomach process my low-fiber, low-fat diet.
Work is back on track. When I did return nearly six months after beginning a short-term disability leave for the treatments, I received a standing ovation from everyone in the newsroom of the Orlando Sentinel. That really touched me more than I could ever express to my friends there or here in writing.

These days, giving feels as great as receiving even that blessing. I love helping others, giving what I can when I can, educating people about my disease and trying to save lives. (So far, I think I’ve kept about six people from following the same roller-coaster ride I took, including an aunt.)

In the two years since my diagnosis, I have met many wonderful people, both in person and online, who have gone through a similar experience. Most are still with us today – thanks to the truly miraculous advances in medicine.

My family even grew larger. I’ve become a grandfather and picked up two sons-in-law (Two daughters down, two to go!) I’ve found a half-brother and two half-sisters (and an assortment of nieces, nephews and cousins) who I didn’t know existed before my cancer.

I discovered how truly special my friends at work are – even the honchos. How supportive people can be. How good it is to be alive.
And I don’t know whether I’d have found all this out if I had not been diagnosed with cancer at stage 3 (without lymph node involvement) in September 2007. But after seven weeks of the chemo pump and after 40 treatments of rads over the same period, followed by an esophagogastrectomy and three weeks in Florida Hospital Orlando, I can say that I am a better person. I think even my friends and family would agree.

Keith W. Kohn is night local editor at the Orlando Sentinel. His blog is CancerVivor.blogspot.com. Feel free to leave a comment on the blog – he’ll get back to you, honest.