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Survivor Learns to Live with Colon Cancer

Article date: September 28, 2011

Phil Gagler

"I had to accept that things happen when they happen."

 

Phil Gagler says the hardest thing he’s ever done is tell his 10-year-old son that he had cancer.

“He knew something was going on because I’d been to the doctors. I told him, ‘Dylan, I’ve got cancer’ and we both cried.”

That was 7 years ago. Today, this 54-year-old husband and father of 2 is an amateur photographer, enthusiastic kayaker and survivor living with stage 4 colon cancer.

Unexpected Diagnosis

Gagler’s ordeal began after a routine annual physical. He’d been feeling great and had no bowel changes or other symptoms, so he had no reason to suspect something was wrong. Then his doctor called to say Gagler’s liver function test was elevated. He would need a sonogram, and later, a CAT scan to make a diagnosis.

When Gagler learned it was stage 4 colon cancer, he found it hard to believe. He thought about his wife, Dana, and sons Dylan and 3-year-old Griffin.

“I asked if there is a stage 5. There isn’t. I thought, ‘I’m dead.’”

It turns out that Gagler had no symptoms because his tumor was long and thin and stayed close to the wall of the colon, causing no bowel obstruction. The doctor was ready to perform surgery, and then prescribe chemotherapy, to extend Gagler’s life a little bit. But Gagler’s wife and brother were not satisfied with this plan. They urged him to get a second opinion and eventually to change doctors, even though he had to pay for some costs that weren’t covered by insurance. The new doctor recommended chemotherapy first and then surgery, and talked about curing the disease.

‘Showing Cancer Who’s Boss’

A couple of weeks later, Gagler began 6 months of chemotherapy, which he tolerated well. The drug Avastin had just become available, and he went on that, too.

He had recently moved to upstate New York from New Jersey, and his new place was close to a lake. Gagler’s brother suggested he start kayaking, to get some exercise and build up his strength before having surgery. For 81 straight days, Gagler woke up at 5am and kayaked for 45 minutes to an hour before work. It made him feel good. He felt he was showing cancer who’s the boss, he says.

Surgeons removed a small section of Gagler’s colon, 60% of his liver, and his gall bladder. They installed a pump to deliver the chemo directly to his liver. The treatment lasted 6 months, but this time things did not go so smoothly. A kind of scar tissue formed on the outside of his intestines, causing them to twist up, kink and become blocked. Surgery was needed to remove the scar tissue. Gagler endured long hospital stays, some longer than 2 weeks, because the drugs used to treat pain shut down his bowels.

Then some suspicious spots on Gagler’s lungs turned out to be cancerous, too. He had lung surgery 3 times over the next 2 or 3 years, and more chemo. To date, Gagler has had chemo more than 260 times.

Lessons from Cancer

Gagler says one thing he learned from all this is patience. “I had to accept that things happen when they happen. When I’m done, I’m done. When I’m not, I’m not.”

He says he’s also learned not to investigate too much on the Internet. “I look at the survival rate and it’s depressing. But data can very often be outdated. And who’s to say I’m not going to be part of that 5%?”

Gagler says he’s very open about talking about his cancer. “If I can help one person get a checkup and prevent having to go through what I have gone through, then it’s a great thing.”

Making Connections Online

He began looking for a place to connect with others who had a similar diagnosis, and found the American Cancer Society’s online peer support group, Cancer Survivors Network (CSN). Through CSN, he shares his experience with nutrition and treatments, and gets inspiration from people who’ve just had surgery.

Gagler was also one of the first people to join WhatNext, the newest offering in the suite of Society online support services. Developed with the participation of the American Cancer Society, WhatNext uses unique technology to match users with similar experiences such as diagnosis, treatment, and other factors. Gagler has customized his WhatNext page to follow the posts that interest him and says he likes the site’s social networking features, including the “like” and “follow” buttons.

By contributing to CSN and WhatNext, Gagler tries to give people hope that they can live with cancer and still have a fairly decent life. “Cancer gives you a lot of new normal. I was normal before this happened. Then chemo was a new normal to get used to. Surgery – another new normal to get used to.”

These days, Gagler has chemotherapy every 3 weeks. He says the side effects are manageable. He gets pretty tired some days, and nauseated, but just a little. He plays guitar, takes nature photos every chance he gets, and kayaks when he can -- though not as often as he’d like.