December 3 is one of the happiest days of my life, but at the same time one of the saddest. On that date in 1993 I married Tony Rafter, the man of my dreams. On our 11th wedding anniversary, we got the devastating news that Tony had colorectal cancer.
Our family life together got off to a quick start. In just over three years, we had two children. We were thrilled when I gave birth to Richard in April of 1994, followed by Mathieu in January 1997. Early on, Tony's job as an industrial mechanic took him all over the world for weeks at a time. I hated that Tony wasn't with me and the boys very often. We moved from Ottawa to Montreal in 1997 so Tony could take a job that didn't involve travelling.
From hectic to horrific
Tony loved his new job, and we were all ecstatic to have him home with us every night. We bought a house in the suburbs and once the boys were in school, I found a job as an executive assistant close to home and their school. With Richard and Mathieu enrolled in hockey, soccer and swimming, life was hectic, but we didn't want it any other way.
Then our lives went from hectic to horrific. It was a dental X-ray that gave us the first clue that something was seriously wrong with Tony. In the fall of 2004, Tony noticed an unusual lump on the inside of his jawbone. His dentist ordered a special X-ray that captures the jaws and teeth in detail. The lump turned out to be a harmless bony growth, but its presence prompted the dentist to become suspicious. He asked Tony if he had ever been tested for Gardner Syndrome.
We'd never heard of Gardner Syndrome, so I did an Internet search. When I read the results of my search, it felt like the pieces of a terrible jigsaw puzzle clicking into place in my mind. The syndrome is a variant of familial adenomatous polyposis (FAP), an inherited colorectal cancer syndrome caused by a gene mutation. Along with excess bone growth in the jaw, other symptoms include blood or mucus in the stool, diarrhea and weight loss. Equally chilling was the fact that each child of a parent with FAP has a 50 per cent chance of inheriting the condition.
FAP starts with benign polyps in the colon as early as puberty and in some cases even earlier. With time, the number of polyps multiplies by the hundreds and even thousands. Treatment involves the surgical removal of the colon and sometimes the rectum. Without this radical intervention, cancer is almost always inevitable, with the average age of onset about 39 years.
Page 1 of 4Our wedding anniversary
At 38, Tony had long lived with what he described as an "active" bowel, but earlier that year, his bowel had become even more active. The diarrhea problem often forced him to make several urgent washroom stops every day. But Tony felt fine, and since he hadn't lost any weight, he didn't worry too much about the diarrhea. There was no history of FAP in his family either (we later learned that about one-third of cases appear as new mutations of the gene).
On Dec. 3, 2004 – our 11th wedding anniversary – Tony had a colonoscopy. The procedure revealed that Tony had thousands of polyps in his colon and confirmed that some of the polyps had become cancerous. Surgery to remove his colon was scheduled for late January.
'Sudden twist of fate'
The diagnosis was devastating. The hardest part was seeing Tony so upset. I sat beside him in the recovery room and we had a good cry together over this sudden twist of fate. Tony slowly came to grips with the news and by the time we left the hospital, he asked the doctor, "OK, what do I have to do to get better?" There was never any recognition that he might not make it through.
We decided to tell the boys the truth about their father's illness. "Are you going to die?" Richard asked, with worried eyes. We had agreed to keep things as normal as possible for our sons, and that included having a houseful of family at Christmas. It helped me to talk to family as well as to friends, colleagues – anyone who would listen. At one of Richard's hockey games, the poor, unsuspecting mother of one of his teammates asked, "How are you?" I couldn't stop the rush of words from spilling out. I told her about Tony's illness, the boys' chances of inheriting it and my fears for all of them. This made her uncomfortable, but I couldn't stop myself. And I felt better afterward.
'The cancer had spread'
During surgery, doctors discovered that the cancer had spread to Tony's liver. Over the next two years, he had two more operations to remove liver tumours and several rounds of chemotherapy. Tony, who used to faint at the mere sight of blood, stayed strong and positive throughout it all.
I, on the other hand, was growing increasingly anxious and fearful. Weighing heavily on my mind was the boys' chances of inheriting the disease. Testing was under way to pinpoint the exact sequence of Tony's gene abnormality. Then, a simple blood test would determine if either or both of our sons had inherited it.
Page 2 of 4I wanted to fix things
I'm a "take-charge" person and when something goes wrong, I want to fix it. The problem for me during that time was that there was nothing I could do to fix things for my family. I wanted to crawl into bed and never come out.
That obviously wasn't an option with a husband battling cancer and two young children to care for. Instead, I became my husband's advocate. The Internet became my new best friend; I spent hours researching experimental therapies, new medications and leading treatment centres. I accompanied Tony to all his medical appointments, bringing a long list of questions for his doctors. It wasn't that I didn't trust these medical professionals; it's just that I believe we should be active partners in our own health care. Besides, looking for a miracle was my way of coping.
A memorable trip
In March 2006, we spent a blissful family vacation in Cuba. The boys frolicked in the ocean with tropical fish, and we all took long walks together on the beach. Tony even tried his hand at parasailing. I charged the trip to my credit card because we didn't have the money, but I didn't care.
And it was worth every penny. Although he'd recently had his third operation, Tony looked and felt good. I always told people he was the "healthiest-looking sick guy you could ever meet." I wanted to squeeze as many happy memories as possible into the time we had left.
More devastating results
I knew that wouldn't last, though. Not long after we returned home from our trip, we learned that Richard did not have the gene mutation that causes FAP but that Mathieu did. Once more, Tony and I cried together before telling the boys. At 12, Richard knew what the results meant. Mathieu was only nine, but he understood that he has "the same disease as Daddy." Within months his first colonoscopy showed that he already has benign polyps in his colon. He will be monitored regularly, and to keep him cancer-free he will probably have his colon surgically removed before he turns 18.
By the spring of 2007, the tumours in Tony's liver had spread to his bones and were causing him pain. He was weak and spent most of every day sleeping. In April, I took a leave from my job to be by his side. He had always been my soft place to fall whenever I was going through a hard time and now I wanted to be his. I had a huge circle of friends to rely on and family not too far away in Ottawa. To keep friends and family informed, I created a blog called "One Day at a Time." Somewhere along the journey with cancer, I had learned to live life that way.
Every day I made sure Tony ate a little and took his pain medicine. I also worked hard to put his mind at ease; he was worried about who would cut the grass or handle car repairs when he was gone. It tore me apart to think of life without him, but I wanted him to believe that we'd be OK without him.
Page 3 of 4'We miss him terribly'
Before dawn on June 17, 2007 – Father’s Day – my beloved Tony slipped away in his sleep. He left this world quietly, knowing the boys were safe and sound in their bedrooms down the hall and I was curled up right next to him. We miss him terribly.
I have made it my mission to raise awareness about colorectal cancer. I've already included links to patient groups and cancer associations on my blog (www.onedayatatime-rar.blogspot.com).
Richard, Mathieu and I were part of a team proudly wearing T-shirts with Tony's photo on the front at the Terry Fox Run last September. When the boys are older, I hope to devote more time to the fight against cancer.
Tony left an important legacy – his unbelievably positive spin on life. When I worry about Mathieu, I know Tony would say that he is a brave, resilient little boy. He would also say that thanks to an early diagnosis, Mathieu will have a long, normal life. And Tony would urge me to be grateful that Richard didn't inherit the disease too. Looking at the future in that bright light, I know we will be just fine.
With proper screening and early diagnosis, most cases of colorectal cancer can be prevented or successfully treated, says Dr. Steven Gallinger, professor of surgery at University Health Network and Mount Sinai Hospital in Toronto and a member of the medical advisory board of the Colorectal Cancer Association of Canada. "You could theoretically prevent 90 per cent of all colorectal-cancer-related deaths with proper screening of people over the age of 50," he says.
The Canadian Cancer Society and the Canadian Task Force on Preventative Health Care recommend that people over 50 who are at average risk for colorectal cancer be screened every two years using fecal occult blood testing (FOBT). (Men and women with no personal or family history of colorectal cancer or inherited syndromes like familial adenomatous polyposis, and who don't suffer from inflammatory bowel disease, are considered at average risk.)
FOBT involves sending stool samples to a laboratory to be examined for traces of blood. Blood in the stool doesn't necessarily mean a cancer diagnosis, but it is an indication that further testing is required.
A sigmoidoscopy or colonoscopy is also recommended every 10 years. During a sigmoidoscopy, a physician uses a soft, bendable tube to examine the rectum and lower part of the colon. For a colonoscopy, a doctor can examine the rectum and entire colon. Polyps can be removed and biopsies taken during both these screening tests. Almost all colorectal cancers start as noncancerous polyps that can be removed before they become malignant.
• Last year, 20,800 Canadians were diagnosed with colorectal cancer and 8,700 died from it.
• Every week, 400 Canadians are diagnosed with colorectal cancer.
• Colorectal cancer is the second-leading cause of cancer-related deaths in the country.
• Only 23 per cent of Canadians at average risk are tested within the recommended time frame, according to one recent study. Reluctance to discuss bowel habits, economics and a shortage of trained doctors are possible reasons why so few Canadians get screened. However, the Canadian Association for Colorectal Cancer is also working with other cancer associations to persuade governments to establish screening programs in each province.
• Familial adenomatous polyposis, the kind of cancer that took the life of my husband, Tony, accounts for one per cent of all colorectal cancers and affects one in 10,000 people.
• When a family member is ill or dying
• Foods that fight cancer
• How to help a friend with cancer
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