Winnipeg Free Press - PRINT EDITION

'She's a pistol'

Retired teacher Kai Arnot outspoken advocate for cancer drug funding

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With her swimmer's shoulders and tall, sturdy build, Kai Arnot jokingly calls herself "a big, strong Russian woman."

Her family roots actually lie in Estonia, near Finland, but one of her grandmothers was Russian.

She's a morning person, up every day at 5 a.m. She looks like somebody who would do a polar-bear swim and call everybody else a wimp for not joining in.

With her take-charge manner, it's easy to imagine Arnot on the volleyball sidelines, shouting encouragement at the generations of girls who played on her teams at Grant Park and Elmwood high schools. The retired teacher doesn't have kids of her own but takes tremendous pride in her former students.

What you'd never guess is that Arnot has incurable metastatic cancer.

"Chemotherapy for colorectal cancer does not usually mean losing your hair," says the longtime St. Vital resident, who lives in a townhouse on the idyllic bank of the Red River. "You keep hearing, 'Gee, you look so good.' After a while, you know it's well-intentioned, but it gets to you. There is no sign that you are really sick."

Sitting at her dining-room table while her husband of 41 years, well-known former sportscaster Andy Arnot, putters in the background, Arnot tells her story matter-of-factly.

She first suspected she had a health problem within a month of retiring from Elmwood High School in June 2003. She pushed a reluctant doctor for three months for a referral to a specialist. Finally, she paid $85 for a colonoscopy to cut her wait time to three months from six.

On Jan. 4, 2004, she watched, on a screen, a scope travel through her colon. "It was very obvious that I had advanced colon cancer," she recalls.

The cancer spread to Arnot's liver, then her lung. Last August, after more than three years of surgeries and chemotherapies, she was taken off all treatment.

Nothing more can be done to stop the terminal disease.

The forceful senior knows, though, what she is determined to stop: silence about this deadly but preventable "below-the-belt" cancer, and inequality of access to Avastin, a drug the Manitoba government refuses to fund.

"She's a pistol," says Sid Chapnick, a fellow patient and advocate. "She is always looking for an opportunity to get the word out."

"She's like a bulldog . . . whenever things are unjust, she pushes," adds Linda Nortoft, another Winnipeg advocate whose husband has colon cancer. "A lot of people don't put themselves out there ... a lot of people (with the disease) almost want to shrink away from it."

The issue that really burns Arnot's butt is what she calls the "two-tier" availability of Avastin, a drug that can extend life (by four to 12 months) and improve quality of life for patients with incurable colorectal cancer.

She herself is not eligible for Avastin because of other medication she takes. Her oncologist, Dr. Ralph Wong, has championed the drug, saying it should be the standard of care.

Five provinces -- British Columbia, Saskatchewan, Quebec, Newfoundland and Labrador and Nova Scotia -- now pay for the costly treatment. Taken intravenously, it works by restricting the blood that feeds tumours. In some cases, Arnot says, tumours may shrink enough to make a previously hopeless case operable.

CancerCare Manitoba has dispensed the drug on a case-by-case basis to a handful of patients since 2006, saying it cannot afford to provide it to every terminally ill patient who could benefit.

CancerCare CEO Dr. Dhali Dhaliwal has said that CancerCare has to weigh how to best spend its limited funds, and developing screening programs to detect the disease before it spreads will save more lives.

Dhaliwal said, last year, giving Avastin to every colon cancer patient would cost about $7 million a year, compared to $3 million for a provincial colon cancer screening program.

If a patient can afford the cost of Avastin treatment -- at least $25,000 -- and his or her oncologist prescribes it, it can be bought at a private Winnipeg infusion clinic. That has led to patients and their families cashing in RRSPs, mortgaging their homes and even holding fundraising socials.

"You shouldn't have to pay for a treatment that is recommended by your oncologist, especially not one that depends on where you live in Canada," she says.

"I've always been a person who believes in equality. I do not like injustice or discrimination . . . they talk about the drug being expensive, and yet Herceptin, which they use for breast cancer, is given and it's much more expensive. . . .

"I'd love to debate (Health Minister) Theresa Oswald on the whole issue."

Arnot is on a first-name basis with Tory health critic Myrna Driedger who has twice presented pro-Avastin petitions in the legislature -- 1,500 names last year, and another 600 names this month.

Nortoft, Arnot's fellow advocate, notes that the Saskatchewan and Nova Scotia governments both approved funding of Avastin shortly after the deaths of outspoken advocates.

Saskatchewan announced it would start picking up the tab in January of this year, seven months after the death of Saskatoon's Terry Rak, who had been the public face of Avastin lobbying. Rak and his wife took out loans to help them pay about $50,000 for Avastin treatments.

Nova Scotia unexpectedly announced it would cover Avastin in April, the same month that Dartmouth lawyer Jim Connors, who had pushed the issue, died of the disease.

As for Arnot, "It would be a huge thing for her if she saw this fight through to the finish," says Chapnick.

Arnot also represents the Colorectal Cancer Association of Canada in Manitoba. She circulates petitions, does radio interviews, fires off letters to the editor and is a dedicated member of the colorectal cancer patient support group that meets monthly.

Perhaps this disease needed someone like Arnot, with her northern European directness, to drag it out of the bathroom and into the spotlight. Canadian notions of tact don't constrain her.

"Unfortunately, colorectal cancer deals with shit. People don't want to do the screening test because it's deemed to be 'ucky.'

"Unfortunately, the vast majority of colorectal cancer patients are asymptomatic (have no symptoms) until it's too late."

Arnot is intensely involved in planning what is believed to be the first-ever event for the cause in Manitoba, a walk and fun run at Kildonan Park on Sept. 13.

It's called Kick Butt for Colorectal Cancer, and everyone is supposed to wear imaginative "butt cover," from loud boxer shorts to long johns. (For more information, e-mail kickbuttrun@gmail.com.)

It seems a cruel irony that Andy Arnot's doctor had him doing the home FOBT (fecal occult blood test) screening every two years, well before Kai was diagnosed. The Colorectal Cancer Association of Canada recommends that all Canadians age 50 and over undergo screening at least once every two years.

Arnot wishes things had been different for her, but she doesn't dwell on it.

"I've never been a person who dealt in the past. You don't change anything in the past. You can only change what's happening now.

"You have a choice. You can lie down and feel sorry for yourself . . . and wilt away. Or you can fight, either for yourself or for others with the disease.

"I'm definitely not ready to lie down."

alison.mayes@freepress.mb.ca

VITAL SIGNS: Kai Arnot

Born Kai Vasara to Estonian parents in England during the Second World War.

In 1951, the family immigrated to Toronto. Her mother worked in retail, and her father repaired boilers.

In high school and at University of Toronto, she was a strong athlete in volleyball, archery, field hockey and swimming.

Earned a degree in physical and health education, then qualified as a teacher and worked in Thunder Bay where she met husband Andy.

They moved to Winnipeg in 1969, when Andy got a job as a sports announcer at CJAY. He later worked at the station that is now Global, before changing careers to sell real estate.

Arnot taught phys. ed. at Grant Park High School for seven years ("I'm in their hall of fame for coaching," she says) then moved to Elmwood High School, where she taught subjects such as family studies, psychology and law for 27 years. While teaching, she completed a master's degree in educational psychology. Always a fighter, she sat on many boards and committees.

Arnot says her proudest accomplishment and her legacy will be her students' success in life. "The proudest thing is to see a kid reach their potential."

Recently, Arnot has been lobbying for fair pensions for retired teachers.

Arnot coached sports teams for almost her entire career, particularly gymnastics and volleyball. She and her husband, who is also retired, were avid curlers and continue to be keen golfers. They like to travel around Manitoba, North Dakota and Minnesota, sampling golf courses.

Facts about colorectal colon or rectal cancer

It is the second-leading cause of cancer death in Canada, behind only lung cancer.

In Canada, one in 14 men and one in 16 women is expected to develop colorectal cancer during their lifetime.

It has a high cure rate if caught early.

This year in Manitoba, about 820 cases will be diagnosed.

A simple screening test called a fecal occult blood test (FOBT), which detects hidden blood in the stool, can be done at home. You receive a kit and smear samples of bowel movements onto a card and send it for analysis.

If your FOBT detects blood, you will be referred for a followup colonoscopy.

You can get an FOBT kit from your doctor, or from the Manitoba Colorectal Cancer Screening Program at 788-8635 or 1-866-744-8961. More information about screening can be found at www.cancercare.mb.ca.

Republished from the Winnipeg Free Press print edition June 29, 2008 $sourceSection$sourcePage

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