the day i became a patient
disease awareness days, like world cml day, are stark reminders of how important access to treatment is.
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i will never forget the day i became a patient. i mean, i had always been a patient — those yearly check-ups, that time i had strep throat, when i developed painful sciatica. these were all times i needed the advice of a medical professional to make sure i was healthy or to make me feel better. probably like you, i never really thought much about it — i got what i needed and moved on. i was a patient, for sure, but not a real patient — not an omg-am-i-going-to-die patient.
not until the labour day weekend in 2008, that is, when an exhausted resident in the emergency room at toronto’s women’s college hospital told me that i had a rare blood cancer called chronic myeloid leukemia (cml). that’s when it happened: full on patienthood. with a white plastic hospital identification bracelet slapped on my wrist and a blue gown that didn’t close properly at the back, i was unwillingly recruited into a world of painful tests, cancer clinics and uncertainty.
lots that is good happened as a result. i’ve met great people who have taught me about resilience, courage and optimism. i’ve had the opportunity to travel across the world as part of an international advocacy group, working with doctors and pharmaceutical companies to help improve the lives of people with cancer. the diagnosis allowed me to stand alongside my brother during the years he lived with liver cancer and use my experience and knowledge to prop him up as best i could. it also made me able to contribute to the very familiar conversations with his doctors about treatment side effects, prognosis and most importantly, hope.
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because of cancer, i live more in the moment. i sometimes eat dessert before dinner, i dance in the street to embarrass my kids and i try not to get wrapped around the axle about little things that don’t really matter.
and while having cancer has enriched my life in some ways, i haven’t gotten to the point yet where i can say that i am grateful for the diagnosis. you know those people who experience awful things and say that they wouldn’t change a thing? that somehow, the terrible thing that happened to them was in fact a really good thing? that’s not me.
in fact, if i could change things, i would choose not to ever know what cancer was. i would choose not to have cancer clinics be a part of my life. i would choose not to see the young mother without hair holding her baby with a shaky thin arm while pulling an iv pole behind her, or the clean-shaven teenaged boy in his out-of-town university sweatshirt pushing his pale sleeping father in a wheelchair, while holding a colostomy bag, or the woman in a pinstriped suit and high heels, weeping into her hands in the hospital parking lot after a devastating diagnosis.
i would choose not to know loss the way i do.
i am, however, extremely grateful for science and the research that has made cml a leukemia that most people can live with. on that day 13 years ago, i was pretty sure that i wouldn’t be alive to see my kids off to middle school, let alone high school. and yet, last week, there i was, wrestling my son and daughter into a quick photo before they rushed out for their first day of grades 9 and 11. in 2008, there was only one targeted chemotherapy drug that had been shown to keep cml at bay — a disease that just years earlier was known as a leukemia that killed. today, there are five good treatment options, plus another in the pipeline.
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soon after my diagnosis, i founded the canadian cml network, a non-profit organization with a mission of connecting people whose lives had been changed by cml and raising awareness of what it’s like living with chronic cancer. after spending countless hours in waiting rooms, passing the time — and seeking distraction from anxiety and worry — by striking up conversations with the person sitting beside me, i learned quickly about the strength that comes with realizing you are not alone, that the resilience of others is a kind of a magic that, even when you are at your lowest and feeling most hopeless, can inspire you enough to face another day. that’s what i hoped the network would be: a community that offered knowledge and education, but more importantly, respite from the feelings of isolation and fear that come with a scary diagnosis.
thirteen years later, the network reaches across canada. before covid-19, people whose lives have been affected by cml would travel to toronto once a year to spend a weekend learning about their disease from leading medical professionals, exploring ways to maintain their emotional health while living with the uncertainty of cancer, and most importantly, spending time with others who understand what it is like to live with a rare blood cancer. many of these connections have become unshakeable friendships.
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this year, on september 22, a date that symbolizes the switch of chromosomes 9 and 22 that causes cml, the canadian cml network and the more than 6,000 canadians living with cml will be marking twenty years of life-saving therapies — medications that have changed this blood cancer from a death sentence to a cancer that most people can live with. we will also be thinking of those who struggle with debilitating treatment side effects and remembering those for whom medications failed, and others who simply — and tragically — were unable to access the treatment they needed to stay alive.
and while these things — a diminished quality of life, medications that don’t work and the inability to get the treatment that’s needed to survive — are reminders that there’s still a lot to be done in cml, they are not challenges unique to cml. in fact, they are not even unique to cancer. from diabetes to rare diseases to mental health, these devastating barriers are endemic throughout our healthcare system.
you may not be a real patient now, but the odds are pretty good that one day, you — or someone you love — will be. your life will change in a second and all you will be able to think about is the ability to live well — have a cure, even — access effective therapies and receive quality care. after all, it’s what we all deserve.
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lisa machado is the executive producer of healthing.ca.
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