Cindy Cowan is dying of ovarian cancer. She's telling her story to raise awareness of the disease and to encourage people at risk to have the genetic testing.Jennifer Roberts/The Globe and Mail
Social activist Cindy Cowan has spent her working life combatting violence against women. "It was a bit of a shock," she says, to discover that instead of helping others, she was the one who needed a support circle. Ms. Cowan, who has the same rare genetic BRCA1 mutation that prompted actress Angelina Jolie to undergo a preventive double mastectomy, was diagnosed three years ago with late-stage ovarian cancer and told to get her affairs in order. She was 45.
Confronting your own death is a sobering business. What do you want to do with the time you have left? For Ms. Cowan, the answer was obvious: increase awareness of ovarian cancer and tell her own story to highlight her belief that the law against assisted suicide should be scrapped for grievously ill people.
On a brisk sunny morning in April, Ms. Cowan, now 47, sits on the red leather chesterfield in her west-end Toronto home and describes her roller-coaster plunge from healthy activist to deathly ill patient. Slight, with curly auburn hair, she is wearing jeans and a T-shirt. Her voice is soft yet alluring.
Ms. Cowan is a natural listener, a quality she honed in the years she spent as the executive director of a women's anti-violence agency. Even while describing her radical surgery and gruesome treatment regimens, she locks her hazel eyes on mine, boring into my consciousness. "I love living," she says, tears welling and spilling onto her cheeks. But she doesn't like pain, and has no appetite for "having the people I love see me suffer. I don't want to have that happen."
Ending her life when "it is too difficult to go on" is part of Ms. Cowan's planning, along with organizing medical powers of attorney, a will and funeral arrangements. What frightens her more than death is the possibility that any of her friends or family could be implicated if she asks them to help her die. A conviction for aiding and abetting a suicide carries a possible 14-year jail sentence.
Besides worrying about her own health, Ms. Cowan, the eldest of three siblings, is anxious about her family. She had always imagined that she would be the one to care for her younger sister, who has learning disabilities and is legally blind. Who will take on that role is one issue. How she could have such a deadly form of cancer at such a young age is another dilemma. Fearing there might have been a genetic trigger, she went for testing at Princess Margaret Hospital and discovered – too late – that she had "a 55 per cent increased risk of developing ovarian cancer."
Then she persuaded her mother and siblings to have testing, and when the results were positive, she convinced them to undergo monitoring and preventive surgery. "It was a long process," Ms. Cowan says, but it was really important to know "that I will, hopefully, be the last person in my family to die from this disease."
By the time Ms. Cowan and I met this April, she was running out of treatment options. No longer able to participate in fundraising marathons, she had others carry her T-shirt across the finish line, while she continued to organize from home. Before I said goodbye, she cheekily handed me a milk-chocolate sucker in the shape of a vagina, a fundraising favour from an ovarian cancer event, which I took pleasure in sucking as I walked through her local park.
When I went back to her house earlier this week, she didn't even try to get off the red leather couch. Her skin had an ethereal glow, but her body was gaunt and her eyes had lost their sparkle and were rimmed with dark circles. There was a patch on one skinny arm and a tube draining toxins from her liver. Her voice was low and raspy, an echo of its former quality. The biggest difference, though, was her exhaustion. Even sitting up to swallow a pill and drink some water required a huge effort and the help of her partner, Rishika Williams.
Both women had heard the news that morning about Angelina Jolie's double mastectomy and applauded her for going public, but Ms. Williams, an information junkie, wondered why the actress didn't put more emphasis on ovarian cancer. Lower in profile than breast cancer, it is a deadlier disease, partly because it is hard to detect in the early stages.
Ms. Cowan, for example, was seeking treatment for a persistent bladder infection when her stomach suddenly ballooned as though she were "six months pregnant." She knew something was "really, really wrong," and so went to a hospital emergency room. That's when she learned that the swelling and the pain was caused by huge tumours enveloping her ovaries.
After radical surgery, extensive chemotherapy and experimental drug trials, she is "much closer to the end."
Both her genes and her body have betrayed her. Besides the genetic mutation, she doesn't react well to the drugs that might extend her life. Since my last visit she has nearly died from an over-prescribed dose of one of her medications. The more drugs she consumes, the more her body goes into "toxic shock," she says.
Ms. Cowan, ever the caregiver, worries about her family watching her waste away. That is not what I hear from those around her. To them, she is emanating grace and beauty and giving them the "honour" of sharing the end of her life. "I don't like to see her suffering," Ms. Williams says, "but I have told her that I am okay with a little bit if it means she stays around longer." The remark, as familiar as bed socks, makes them both smile.
"My focus," she continues, "is Cindy's quality of life and that is the only thing I can try to control… what support she gets, what services she gets and that she gets what she wants."
When Ms. Williams moves away to answer the insistently ringing phone, Ms. Cowan voices a new anxiety. She doesn't think she is physically capable of dying alone, by her own hand, when living becomes too gruesome. The alternative, including the possibility of a police investigation if somebody helps her die, is intolerable, so she may be forced to live longer and more painfully than she wishes. (Last week assisted-suicide charges were laid in Alberta in the death of a woman whose name is protected by a publication ban.)
On another score, though, she is at peace. "I have protected the people I love [from this disease]," she says in a voice that is barely audible. "That is important to me. There's not much else I can leave them."