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Help Suzanne Aucoin
Nov 12, 2007 - The St. Catharines Standard
St. Catharines Standard (ON)
Remembering Suzanne, Monday, November 12, 2007, p. A2
Her life, her story
The Standard has been following Suzanne Aucoin's fight against cancer in a
series of stories for the past two years.
By PETER DOWNS
Standard Staff
Two months before her death, Suzanne Aucoin wanted to begin writing a book
about her life.
Sitting in her parents' backyard in Port Dalhousie on a beautiful late
September afternoon, she explained her situation.
She was at a crossroads.
Nearly nine years after she was initially diagnosed with colon cancer - and
four years after being told it was terminal - it was a familiar enough place
for her to be.
But this time, she felt more lost and more unsettled than in the past.
This time, she really could foresee the end. The weakness. The fatigue. The
continual medical complications. Now she really did feel like a cancer
patient.
She hadn't been told yet by her doctors to abandon chemotherapy altogether.
That would come a couple of weeks later. She would listen to her oncologists
tell her the chemo was doing her more harm than good. She was too fragile.
The cancer in her liver and lungs was still growing.
But that September afternoon, Suzanne, 37, said she hoped writing a book
about her life would help her spirits.
She wanted to find a way beyond the crossroads and move closer towards
acceptance. Acceptance that she couldn't outmanoeuvre her disease any
longer. No matter how desperately she hoped to get better, she had to begin
accepting that she was getting worse.
As her physical limitations increased, she planned to fill the downtime
writing about her life and the way cancer had changed its course. She hoped
it could help others deal with their own illnesses at the same time as it
helped sort out her own feelings.
"I'm seeing this as an assignment. Something I can work on by myself when
I'm at loose ends, when frankly I have all the time in the world and no one
to do something with," she said, trying to keep her composure. "I'm hoping
it will calm the questions of what is my purpose and why am I here and
what's this all about."
Suzanne didn't get to write her book. Her health declined too quickly. She
died early Sunday morning.
But over the past two years, her life itself was an open book.
Suzanne agreed in December 2005 to let The Standard follow her in an ongoing
series. The original idea of the series was to capture snapshots of daily
life for a young woman living with a terminal illness.
But the focus quickly shifted from Suzanne's personal struggle against a
disease to her battle for greater and more equitable access to
cancer-fighting drugs in Ontario.
Suzanne firmly believed that by going public with the fight for her life,
she would expose problems with the health-care system so they could be
fixed.
She didn't begrudge the privacy she gave up in the process.
"I don't know any other way to be," she said a few days before Christmas
last year.
"I don't do it with the expectation of getting something back. I do it with
the hope of making a difference in someone else's life so that they can have
an easier road."
Suzanne's personality and background seemed almost custom-tailored to make
her an extremely effective advocate for herself and others.
Before she became ill, she was a chaplain at Denis Morris High School in St.
Catharines, where she counselled students, helped them through their own
personal tragedies and organized fundraisers for social causes.
"I always thought I'd be the person to be the spokesperson for the underdog,
but not for me. Because I was OK as me," she said in January 2006.
Determined to get her hands on expensive cancer-fighting drugs that weren't
commercially available in Ontario, Suzanne put her skills and experience to
work.
She turned taking care of her health and fighting cancer into a full-time
job.
She struck a fundraising committee that would help organize events to
generate money to help pay for treatments in the U.S. She set up a website
chronicling her cancer fight. She took on politicians and bureaucrats in
publicity campaigns at Queen's Park. She helped found a provincial resource
group for people living with colon cancer.
"I feel like a CEO running my own business. That's exactly what I feel
like," she said, explaining her approach.
Suzanne's large network of friends and relatives - as well as many complete
strangers from the community - responded generously.
Over the past three years, supporters donated more than $180,000 to help
cover her medical expenses.
And earlier this year, Suzanne's tenacious battle for equitable treatment
paid off with a huge victory over the provincial Health Ministry.
Suzanne had maintained provincial health officials mistakenly turned down
her request for out-of-country funding to receive the intravenous cancer
drug Erbitux in western New York, forcing her to spend thousands of dollars
out of her own pocket.
Ontario ombudsman Andre Marin launched an investigation into Suzanne's case.
The ombudsman ruled in her favour last January, blasting the provincial
Health Ministry for its "cruel" and misguided treatment of her.
In a scathing report on the ministry's failures, Marin recommended that
Suzanne be repaid about $76,000 for her drug treatment costs, plus legal
fees. He also called for an overhaul of the ministry's out-of-country health
benefits program.
The review, which hasn't yet been completed, could lead to improved
conditions for countless cancer patients who follow Suzanne's path to
medical treatment outside the country.
"I think Suzanne's a very courageous woman and because of it, we all
benefit. I think it's positive for all of us. And it's all because Suzanne
wasn't only fighting the battle for her life, she was also fighting the
system and making it better," Marin said last spring after meeting Suzanne
face-to-face for the first time.
But Suzanne didn't bask in the glow of her victory over dysfunctional
decision-makers at the Health Ministry.
The day she received a hand-delivered cheque of reimbursement from the
province's deputy health minister, Suzanne said she had her sights set on
other improvements that needed to be made to the health-care system.
She had already begun to drum up opposition to a proposal by Cancer Care
Ontario to allow cancer patients to pay for expensive intravenous drugs that
aren't covered by the province's drug plan - a situation Suzanne felt would
set the table for inequitable access to treatment.
"This is one very small aspect of our overall struggle," she said at the
time. "This is just one thing off the list. There are other things to start
tackling."
Shortly before the provincial election in October, Suzanne was back in
action on the advocacy front, even though her own health had begun to
decline noticeably. She and members of a coalition of cancer activists
pushed for voters to cast ballots in favour of bringing Ontario into line
with other provinces when it comes to access to intravenous cancer
medications and an advanced form of diagnostic imaging scan.
But after the advocacy campaign, Suzanne had to focus all of her attention
on her own fight.
She could no longer ignore the elephant shadowing her. Lumbering steadily
after her every step.
That's the way Suzanne used to think of her cancer. She imagined it as an
ever-present elephant in the room.
Sometimes it was a huge beast, dominating and terrifying. Other times - the
good times - it was so small and obscured by whatever else was going on in
the room that it practically faded into the background.
In her final few weeks, Suzanne worked harder to be less afraid and
resentful of the elephant's presence. She gave up trying to shrink it with
her thoughts. It became too exhausting.
She certainly wasn't going to reach out to embrace it. But she stopped
trying to force it away. If it was going to insist on being with her all the
time, she would put up with it trailing along.
She called her new mindset taking the elephant for a walk.
"I think it's a level of acceptance," she explained. "It's not me versus the
government. It's not me versus the hospitals. It's not me versus the
doctors. It's not me versus the Ministry of Health. It's me with the
elephant. I'm managing it."
Managing again to find a way through a crossroads. Walking with elephants. A
mental trick Suzanne no longer has to play.
pdowns@stcatharinesstandard.ca
St. Catharines Standard (ON)
Remembering Suzanne, Monday, November 12, 2007, p. A2
Her life, her story
The Standard has been following Suzanne Aucoin's fight against cancer in a
series of stories for the past two years.
By PETER DOWNS
Standard Staff
Two months before her death, Suzanne Aucoin wanted to begin writing a book
about her life.
Sitting in her parents' backyard in Port Dalhousie on a beautiful late
September afternoon, she explained her situation.
She was at a crossroads.
Nearly nine years after she was initially diagnosed with colon cancer - and
four years after being told it was terminal - it was a familiar enough place
for her to be.
But this time, she felt more lost and more unsettled than in the past.
This time, she really could foresee the end. The weakness. The fatigue. The
continual medical complications. Now she really did feel like a cancer
patient.
She hadn't been told yet by her doctors to abandon chemotherapy altogether.
That would come a couple of weeks later. She would listen to her oncologists
tell her the chemo was doing her more harm than good. She was too fragile.
The cancer in her liver and lungs was still growing.
But that September afternoon, Suzanne, 37, said she hoped writing a book
about her life would help her spirits.
She wanted to find a way beyond the crossroads and move closer towards
acceptance. Acceptance that she couldn't outmanoeuvre her disease any
longer. No matter how desperately she hoped to get better, she had to begin
accepting that she was getting worse.
As her physical limitations increased, she planned to fill the downtime
writing about her life and the way cancer had changed its course. She hoped
it could help others deal with their own illnesses at the same time as it
helped sort out her own feelings.
"I'm seeing this as an assignment. Something I can work on by myself when
I'm at loose ends, when frankly I have all the time in the world and no one
to do something with," she said, trying to keep her composure. "I'm hoping
it will calm the questions of what is my purpose and why am I here and
what's this all about."
Suzanne didn't get to write her book. Her health declined too quickly. She
died early Sunday morning.
But over the past two years, her life itself was an open book.
Suzanne agreed in December 2005 to let The Standard follow her in an ongoing
series. The original idea of the series was to capture snapshots of daily
life for a young woman living with a terminal illness.
But the focus quickly shifted from Suzanne's personal struggle against a
disease to her battle for greater and more equitable access to
cancer-fighting drugs in Ontario.
Suzanne firmly believed that by going public with the fight for her life,
she would expose problems with the health-care system so they could be
fixed.
She didn't begrudge the privacy she gave up in the process.
"I don't know any other way to be," she said a few days before Christmas
last year.
"I don't do it with the expectation of getting something back. I do it with
the hope of making a difference in someone else's life so that they can have
an easier road."
Suzanne's personality and background seemed almost custom-tailored to make
her an extremely effective advocate for herself and others.
Before she became ill, she was a chaplain at Denis Morris High School in St.
Catharines, where she counselled students, helped them through their own
personal tragedies and organized fundraisers for social causes.
"I always thought I'd be the person to be the spokesperson for the underdog,
but not for me. Because I was OK as me," she said in January 2006.
Determined to get her hands on expensive cancer-fighting drugs that weren't
commercially available in Ontario, Suzanne put her skills and experience to
work.
She turned taking care of her health and fighting cancer into a full-time
job.
She struck a fundraising committee that would help organize events to
generate money to help pay for treatments in the U.S. She set up a website
chronicling her cancer fight. She took on politicians and bureaucrats in
publicity campaigns at Queen's Park. She helped found a provincial resource
group for people living with colon cancer.
"I feel like a CEO running my own business. That's exactly what I feel
like," she said, explaining her approach.
Suzanne's large network of friends and relatives - as well as many complete
strangers from the community - responded generously.
Over the past three years, supporters donated more than $180,000 to help
cover her medical expenses.
And earlier this year, Suzanne's tenacious battle for equitable treatment
paid off with a huge victory over the provincial Health Ministry.
Suzanne had maintained provincial health officials mistakenly turned down
her request for out-of-country funding to receive the intravenous cancer
drug Erbitux in western New York, forcing her to spend thousands of dollars
out of her own pocket.
Ontario ombudsman Andre Marin launched an investigation into Suzanne's case.
The ombudsman ruled in her favour last January, blasting the provincial
Health Ministry for its "cruel" and misguided treatment of her.
In a scathing report on the ministry's failures, Marin recommended that
Suzanne be repaid about $76,000 for her drug treatment costs, plus legal
fees. He also called for an overhaul of the ministry's out-of-country health
benefits program.
The review, which hasn't yet been completed, could lead to improved
conditions for countless cancer patients who follow Suzanne's path to
medical treatment outside the country.
"I think Suzanne's a very courageous woman and because of it, we all
benefit. I think it's positive for all of us. And it's all because Suzanne
wasn't only fighting the battle for her life, she was also fighting the
system and making it better," Marin said last spring after meeting Suzanne
face-to-face for the first time.
But Suzanne didn't bask in the glow of her victory over dysfunctional
decision-makers at the Health Ministry.
The day she received a hand-delivered cheque of reimbursement from the
province's deputy health minister, Suzanne said she had her sights set on
other improvements that needed to be made to the health-care system.
She had already begun to drum up opposition to a proposal by Cancer Care
Ontario to allow cancer patients to pay for expensive intravenous drugs that
aren't covered by the province's drug plan - a situation Suzanne felt would
set the table for inequitable access to treatment.
"This is one very small aspect of our overall struggle," she said at the
time. "This is just one thing off the list. There are other things to start
tackling."
Shortly before the provincial election in October, Suzanne was back in
action on the advocacy front, even though her own health had begun to
decline noticeably. She and members of a coalition of cancer activists
pushed for voters to cast ballots in favour of bringing Ontario into line
with other provinces when it comes to access to intravenous cancer
medications and an advanced form of diagnostic imaging scan.
But after the advocacy campaign, Suzanne had to focus all of her attention
on her own fight.
She could no longer ignore the elephant shadowing her. Lumbering steadily
after her every step.
That's the way Suzanne used to think of her cancer. She imagined it as an
ever-present elephant in the room.
Sometimes it was a huge beast, dominating and terrifying. Other times - the
good times - it was so small and obscured by whatever else was going on in
the room that it practically faded into the background.
In her final few weeks, Suzanne worked harder to be less afraid and
resentful of the elephant's presence. She gave up trying to shrink it with
her thoughts. It became too exhausting.
She certainly wasn't going to reach out to embrace it. But she stopped
trying to force it away. If it was going to insist on being with her all the
time, she would put up with it trailing along.
She called her new mindset taking the elephant for a walk.
"I think it's a level of acceptance," she explained. "It's not me versus the
government. It's not me versus the hospitals. It's not me versus the
doctors. It's not me versus the Ministry of Health. It's me with the
elephant. I'm managing it."
Managing again to find a way through a crossroads. Walking with elephants. A
mental trick Suzanne no longer has to play.
pdowns@stcatharinesstandard.ca