I live with a chronic illness, rheumatoid arthritis, but I am not a patient. I am a healthcare consumer. And so are you. “Patient” is derived from a Latin word meaning to suffer. While this meaning applies at times, being defined as such isn’t the way I approach life – and I know others who feel the same. There’s a sense of passivity linked to the word patient, while “consumer” denotes the ability to make choices. That’s what I do when I seek the services of healthcare professionals, pay for those services through my taxes and actively make informed decisions about my health.
Words matter, and it’s time to change the vernacular to reflect a new era of informed and conscious healthcare consumers – those who take responsibility for their wellness and expect more in return.Seizing control and carving your own path as you navigate the healthcare system are essential.
Living well with ovarian cancer
Sharon Halpern describes her job as “staying alive,” and after 18 years of living with ovarian cancer, she is very good at her job.
Halpern was just 51 when diagnosed with late-stage ovarian cancer in 2000. After her initial surgery and treatment, she went in search of information to help her adjust to her new reality. At first glance, the statistics were grim and overwhelming, but Halpern looked for the light: She found it in a pamphlet from Ovarian Cancer Canada that featured the story of a woman thriving six years post-diagnosis.
“I read that story and it gave me hope … I took that pamphlet and I put it under my pillow. I slept with it. Because that’s how important it was to me,” recalls Halpern, who continues to buoy herself with survival stories.
She calls the women behind such stories her Ovarian Cancer Sisters, and says she derives hope and comfort from shared experiences. “Listening to their stories. Hearing what happened to them and all the different treatments that they’ve experienced was so inspiring to me.”
Today, she is one of those storytellers, sharing insights through her volunteer work with Ovarian Cancer Canada. She feels strongly about giving back and sees this as part of her legacy.
And Halpern’s is an incredible story to tell. Despite many recurrences, 10 major surgeries, multiple chemotherapy and radiation treatments, as well as a clinical trial, she beats the odds and lives a full life. “I know that gives others hope,” she says.
A self-professed “glass half-full person,” Halpern’s attitude toward cancer is an evolution. She knows she will never be cancer-free, but finds ways to live with cancer. “Yes, you’re going to be frightened. Yes, you’re going to be shocked. But you can’t live a life being depressed all the time, anxious all the time. Because if you do, it’s no life.”
She’s realistic and plans around treatments, but still lives a life defined by things that are meaningful and make her happy. This includes spending time with her family and wintering with her husband, Phil, at their home in Florida (she returns monthly to Toronto for treatments). In addition, she is plotting their next vacation, volunteering for Ovarian Cancer Canada, and is an active member of her cancer peer support group. That leaves just enough time to hang out with her girlfriends, who get together weekly to play canasta and mah-jong.
All the while, Halpern is her own best advocate, not content to sit back and passively take advice. While she stresses how thankful she is for her amazing team of healthcare providers, she knows how important it is to use her voice in the healthcare system. This means conducting her own research, constantly seeking information and talking to her healthcare team about choices, concerns or ideas. She asks for second opinions, follows her instincts and takes calculated risks. For instance, she is a huge proponent of clinical trials. “In order to find new treatments, we need clinical trials out there, and we need people to go into them.”
This openness and willingness to be part of the solution is what makes Halpern so good at her job – staying alive.
Visit Ovarian Cancer Canada for more inspiring stories about women living their best lives with cancer.
The business of living with acute kidney failure
Lawrence Geller is an independent insurance agent who approaches his acute kidney failure like any other business – managing to-do lists, staying on top of the latest information, building strong relationships and assessing opportunities.
It was 2008 when Geller, who lives in Campbellville, ON, noticed a dip in energy. On ski trips he’d tackle fewer difficult runs and during a trip to Paris, he found himself taking taxis rather than walking. He brushed it off as aging and didn’t seek medical help right away.
Soon, others started noticing the changes. His wife, Lucetta, insisted he see a doctor. He discovered that his symptoms stemmed from acute kidney failure, and he quickly embarked on a new venture.
With the support of a medical team at St. Michael’s Hospital in Toronto, Geller managed home-based dialysis for eight months (10 hours a night) while continuing to operate his business and service his clients. Working helped him maintain a sense of normalcy.
In late March 2009, Lucetta gave her husband the ultimate gift – a healthy kidney. Geller still jokes he’s “keeping it warm for her.”
Geller chose not to let the transplant change his outlook, and recalls being on the phone with a client just hours after his surgery. “While I had a problem, my client’s problem was worse,” he says, illustrating his perspective on life and commitment to helping others.
Realizing he had a lot to learn, he sought mentors with similar experiences. “Finding others who have had transplants was not easy,” he says. At the hospital, he would scan the walls, noting the names of those who had donated to the transplant program, and reached out to ask questions. As part of this due diligence, he connected with the Trillium Gift of Life program.
After evaluating opportunities and challenges in the system, he became an advocate, speaking with politicians and decision makers about his experience, with an eye on raising awareness.
Today, he’s a volunteer patient collaborator with the national research network, Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease.
“When we met as a group … we quickly found that the one thing we all wish had been available to us was someone who had been through what was happening to us and had come out of it well,” says Geller. “This was as true for the recipients as for the living donors.”
Nearly a decade after his own transplant, Geller continues to juggle his volunteerism with work (although fewer hours) and focuses on optimizing his health.
It is an ongoing responsibility. He follows a very strict diet, opts for the stairs whenever possible and takes his medications as instructed: He didn’t take medication pre-diagnosis and now takes 14 pills a day. His calendar helps him stay on top of quarterly blood and urine tests, as well as follow-up meetings with the post-transplant team at St. Michael’s.
As he navigates the healthcare system, Geller uses what he considers a commonsense approach that’s served him well during his 40 years in business: He treats people with kindness, asks to be called by his first name, thanks people for their help and keeps detailed records, files and notes of all of his appointments and interactions.
Originally published in Issue 01 of YouAreUNLTD Magazine.