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they told me i had cancer. it wasn't a 'fight' i signed up for

september 22 is world cml day. it reminds me that if i had been diagnosed 25 years earlier, i would probably be dead.

chronic myeloid leukemia: september 22 is world cml day
lisa machado, pictured here with her children, was 36 when she was diagnosed with a rare blood cancer. supplied

i don’t remember much about the days following my diagnosis.

it was chronic myeloid leukemia (cml), they said. it was the “lucky” kind, they said. the emergency doctor smiled gently as i cried — “luck” and cancer didn’t seem to belong in the same sentence. neither did living.

deep in my consciousness, that time in my life is a collection of still images. these images are crisp and clear: my daughter’s bright blue eyes against her porcelain skin, looking up at me in the light of the afternoon sun when i told her that i couldn’t nurse her anymore because i was taking medicine; my fist tightly clasped around her little sock (for luck) as i lay on my side for my first bone marrow biopsy; the confident, kind face of my oncologist as he explained my options.

along with each of these images comes one overwhelming sensation: a feeling of being completely alone — the kind of alone that takes your breath away.

yet, i wasn’t alone. not really. my family rallied around me, doing their best to be positive, in that omg-she-has-leukemia kind of way. a few friends attempted to reach out — although let’s face it, watching a thirty-something mom with young kids confront mortality is no fun. but while i had the physical presence of people around me, including the beautiful, warm cuddles from my kids, i was essentially standing alone. it was me vs. cml.

as i began to spend a lot of time in cancer clinics, i became familiar with this “us-versus-it” concept. cancer was a fight. i noticed the stories about people with cancer, those “battling” their disease, those who had “lost the battle” and those who “fought back” and won. i found these statements astonishing.

i noticed the stories about people with cancer, those “battling” their disease, those who had “lost the battle” and those who “fought back” and won

i was eager to know: was i going to be a winner or a loser? what a strange and inappropriate concept.

let’s be clear. cml isn’t a competition that i signed up for. i haven’t spent my life training for this event, i am not happy or even a little bit excited about the challenge. it doesn’t matter how much, or how little, i “fight” — whatever that even means. sure, like all people living with cancer, i do my best to live well, pay attention to my health and be positive, but how it all ends has nothing to do with me.

i was eager to know: was i going to be a winner or a loser?

i live with these thoughts every day of my life — as i hold the hands of those who have not been so “lucky,” as i swallow the tablets of chemo each night bracing for the waves of nausea that sometimes come, and as i watch my kids grow… savouring every moment.

september 22nd is a day that stands for so many things. 09/22 was chosen to illustrate the genetic switch that happens between chromosomes 9 and 22 which causes cml. but today also symbolizes life. it reminds us of how far we have come, not only in cml research, but also in cancer treatment. today, more people than ever before are expected to survive their cancer diagnosisp;l[

it’s also a day to recognize that, although the statistics are improving, they are nowhere close to where they need to be. despite all the great stories in cml, there are also many disappointing and heartbreaking ones — medications don’t always work, some people will need a harrowing stem cell transplant to survive, and yes, some die.

so when we talk about cancer “fighters,” and those who “won” the battle, let’s remember that for every winner, it feels like there should be a loser — and in cancer, there are no losers. just people who stand face-to-face with a terrifying adversary and hope and pray for the best. and until we can step into the ring and emerge victorious — every, single, time — our work is not done.

no one knows for sure who is going to be the victor in this crazy me versus cml tussle, but i think it’s looking good for my side.

a version of this piece was originally posted on cure today.

lisa machado is the executive producer of healthing.ca. she is also the founder of the canadian cml network

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the leukemia & lymphoma society of canada (llsc)
lisa machado
lisa machado

lisa machado began her journalism career as a financial reporter with investor's digest and then rogers media. after a few years editing and writing for a financial magazine, she tried her hand at custom publishing and then left to launch a canadian women's magazine with a colleague. after being diagnosed with a rare blood cancer, lisa founded the canadian cml network and shifted her focus to healthcare advocacy and education.

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