What doesn't kill you, makes you stronger

Tom Touzel learned one of life's most important lessons, perhaps unintentionally, after deciding several years ago that he would not succumb to bladder cancer, chose to fight it, and won.

Touzel, who lives in Vankleek Hill but travels abroad on a regular basis, said despite having to undergo regular checkups for his health, he lives a relatively fit and active lifestyle - and he feels good.

His advice? Take your care into your own hands and be relentless.

"No matter what you're dealing with, especially with cancer, the proactive are the survivors," he said. "When you sort of walk in and say, 'Do what you need to do,' that's when you lose.

"It's important to get involved in your own care and be involved with doctors and nurses and technicians and so on, so that you understand what's going on and you can better communicate to them what's going on."

Touzel was first diagnosed with bladder cancer in the spring of 2005, when he visited his primary physician in Fort Lauderdale, Florida. At the time, he was taking a blood thinner (Coumadin) after suffering a stroke about a decade earlier - and wrongly assumed the blood in his urine was linked to the medication.

"I never thought to discuss it with my doctor until one time, when I was in Korea and the bleeding started and I stopped taking Coumadin and it kept on bleeding," he recalled. "Within a week, I was in the hospital."

His first surgery took place in Miami in April 2005, and Touzel recalls his doctor coming in post-operation and uttering a few simple sentences.

"He said, 'So Tom, can you hear me and understand me?' I said, 'Sure.' He said, 'Well, it's not pretty. What you need to do is go home and get your s--t together.' That's literally what he said - and he walked out of the room."

Touzel decided right then and there that the diagnosis would not control his life. He began researching cancer care centres that deal with bladder cancer and decided on the M.D. Anderson Cancer Center in Houston, Texas.

The surgeon he would see was Dr. Colin Dinney, though the latter didn't know it yet.

"I went into the clinic and they told me they weren't taking any new patients," said Touzel. "So I went back to admissions and said, 'I know there's a great turnover in patients. I will sit here and wait until Dr. Dinney comes to me.'

"The next morning I went back there, and around 11 o'clock, he came over and said, 'Mr. Touzel, I understand you're pretty persistent.' I said, 'I am, because I want a winner. I don't intend to lose this battle and I want you on my team.'"

Touzel had with him his MRIs, scans and reports, but nevertheless was scoped again at M.D. Anderson. The clinic would not offer a definite prognosis, only saying its team would do the best it can do - along with robotic surgical procedures and drugs.

"I just started with treatments there, including two surgeries, and was rendered clean and declared clean," he said. "A couple of years ago, I reached my five-year point of being clean and [Dinney] said, 'Okay, are you ready for a prognosis? If you keep doing exactly what we tell you to do, I can promise you will not die of bladder cancer.'"

One year into the treatment, Dr. Dinney asked him to serve as a patient advocate for bladder cancer. Touzel said he was initially concerned it would be "like giving people ice and water," but he quickly learned it meant being part of "a very complex group of people that acts as referees between doctors and patients."

"It's not about battles but translating what they're feeling and thinking, making sure their questions are answered, their needs are met, no bulls--t, up front and honest," he said. "I've been doing that for five years now and I've become involved with other advocates and many other disease sites."

Staying positive

Bladder cancers is one of the cancers of which there is no cure, meaning it requires regular care and management. Touzel continues to be examined every three months and will likely do so for the rest of his life - as there's always the chance it'll "pop up" again.

"We all have cancer cells floating around in our systems and one of the great mysteries is: what triggers them to grow and become tumours and metastize and spread?" he noted.

But what gives him such a positive outlook on his condition, Touzel was asked.

"There are some truths that are absolute," he stated. "The proactive are the survivors. The people that engage their own illness and treatment are the ones that come out on top. That's all I know but I'm grateful that I'm happy and healthy and have a great family and live a great life."

This week, Touzel also celebrates a noteworthy milestone: once an alcoholic, he is now 38 years clean in Alcoholics Anonymous. Asked about what inspires him to be so forthcoming - and public - about his disease, he says being involved in that group and abstaining from alcohol taught him an important lesson that he readily referred to after his battle with cancer.

"I learned very early in AA that the key to survival is sharing," said Touzel. "Sharing, not being afraid to share you story and your fears and I've always done it. That's sort of the way it is with cancer, too. The fact that I'm cancer free today is something that can give hope to someone, someday, who is just embarking on this journey.

"They say, 'Look, an old fart with wrinkled hair has beat it' and they have hope then. They also see patients walking around with no colour in their face and that's frightening - so we need to keep the hope up for all these people. Everybody is entitled to hope and faith."

Words of advice

Touzel's advice, again, is to be proactive - and don't assume you can just sit back and let the system take care of you.

"Whether you're in Canada or the U.S. - both medical systems work - you still need to learn how to work the system," he said. "You can't just sit back and let the system work you. When you have an issue that needs special attention, you need to demand special attention from primary physicians - and you're entitled to it.

"It's the same thing down here [in the U.S.] with Medicare and insurance; most companies have restrictions on the doctors themselves, on who's included in their plan, and you have to make demands. Speak up and say, 'I am a human, I am covered by you and that is what I want - and I want the best.'"

Touzel refers to that approach as "speaking up and attacking the system, making it do what it's supposed to do for you."

"I am not a religious guy, but I'm pretty spiritual," he continued. "I'm not a Sephardic Jew or a born-again Christian or a radical Buddhist, but we have to somehow develop a sense of faith... and that's really where the freedom for all of us comes, is engaging and embracing the faith - wherever we find it.

"We are powerless over all kinds of things in this world, and cancer is one of them, but we're not powerless in dealing with it. People need to search out the optimum in treatment and care and go for it."

Those are the so-called words of wisdom from a man who, at an age where most people settle into retirement, now travels the world as a judge for dog shows. Touzel relocated to Vankleek Hill several years ago after operating a kennel in Pointe-Fortune for 20 years, noting "this area is really home."

He doesn't spend much time in the gym, but calls himself "fairly fit and active" as well as grateful to live the lifestyle he does - and when he's tired of flying on airplanes, to be nestled comfortably in eastern Ontario.

"Be proactive - if not, you're giving up."