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machado: would you stop taking life-saving medication if the side effects made it hard to be alive?

we tend to think stopping treatment that is extending survival is a choice between living or dying, but perhaps it's simply deciding how you want spend your life on your way to death.

by lisa machado

aug 8 2023
read time 7 minute read
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would you choose quality of life over quantity?
humans are not programmed to accept death, to just stand by and watch it happen, especially in situations where there seems to be choice, options, or at the very least, hope. getty
if you had medication to keep a life-threatening disease at bay, but it came with side effects like severe fatigue, diarrhea, rashes, nausea that was sometimes debilitating, and an increased risk of a secondary cancer, would you still take it?
it might sound like a dumb, no-brainer question. after all, who wouldn’t choose life over death?
when i was diagnosed with chronic myeloid leukemia (cml), i was prepared to do whatever it took for the best chance at survival. i was driven by fear and anxiety, and excruciatingly aware that things could go sideways at any point. i’d like to say that i leaned in to the uncertainty with grace and fortitude, hoping for the best and feeling at peace with the worst. instead, i let the uncertainty consume me, breathlessly waiting to hear the outcome of each test and biopsy, every time convinced that the moment had come to prepare for the end.
it never came though, that sign of the end. i joined a randomized trial, and within a few months, i was in what my oncologist called “remission,” meaning that as long i took the daily targeted chemo medication, the chances were good that the cancer wouldn’t progress. and in just six months, the cancer cells in my blood decreased so much that the leukemia was undetectable. not gone, my oncologist would always point out, but just harder to find.
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there was a lot that was fortunate about the whole situation. that i was able to access a trial that covered the $5000 per month medication was a bonus, but the associated frequent testing, access to a nurse and regular appointments with my oncologist helped to take the sting out of the fact that should the remaining cml cells in my body decide to go rogue, it would be caught sooner rather than later.
the other piece of good fortune was that, despite the laundry list of potential side effects of the medication, everything from nosebleeds, bone pain and dizziness to liver failure, pulmonary fibrosis and stomach perforation, the ones i experienced were relatively minor and rarely impacted my ability to take care of kids, work and enjoy the gift i had been given of being able to live with cancer. 

fatigue that makes it impossible to work

this, though, has not been the case for many of the other patients that i have met since then. many are plagued with heavy fatigue that makes it impossible to maintain a full-time job, bone and muscle pain that requires daily prescription painkillers, and/or water retention that rules out wearing any type of fashionable shoe. add in the emotional effects like anxiety and depression that can come from living with cancer, and a joyful life, let alone getting out of bed in the morning, can feel like nothing more than pipe dreams.

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still, you may say that all of this is still better than not being alive.
but what if things got really prickly? say the medication made you lose your hair, develop anemia and caused muscle spasms so intense that you couldn’t hold the steering wheel in a car, or shuffle a deck of cards? what if your lungs frequently filled with fluid, requiring antibiotics or worse, a needle inserted into your chest to suck it out? would being dead start to look like a viable option?
this week i began planning a conference for the cml non-profit organization that i founded a bunch of years ago when i was first diagnosed. it’s the first time we are meeting in-person since the pandemic and the response has been overwhelming and lovely, except for one note that came from someone living in nova scotia.
the last time we saw each other, about three years ago at the last patient conference, she was optimistic. living with cml wasn’t fun, the medication side effects were getting her down, but she had plans to retire, travel and spend time with friends. she hoped to start a support group in her hometown. she was struggling, but had her sights set on moving forward, and back then, it seemed that she took all the strength and determination that flowed within our small but mighty community back east, posting smiling photos of herself — healthy flushed cheeks and bright eyes — and her new dog a few months later.

choosing not to have treatment is a deeply personal decision

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but last week she wrote to say that she wouldn’t be attending the conference. she said that she had tried stopping medication for awhile as part of a new-ish cml treatment strategy called treatment-free remission (tfr). tfr has been very successful in about 50 per cent of patients who, after stopping cml therapy, continue to live for years in remission, and also free of side effects.
unfortunately, she wasn’t one of the 50 per cent. when her leukemia numbers began to rise and her doctor suggested going back to an increased dose of medication, she couldn’t bear the thought of having to once again manage life-changing side effects. she was done with medication, she said, adding that she had also had treatment for two other cancers. she was deciding to “bow out” of the cml community, she wrote, because she didn’t think that “the people who were fighting for their lives every day” would understand her decision.
she shared plans of travelling with her stepdaughter, and making memories — “living my life, as if today is the last” — and having a glass of wine, which, before tfr, was impossible because of medication side effects. i understood her decision, after all, it’s tremendously difficult to live life when you constantly feel sick and in pain. but i also felt compelled to mention the myriad of drugs that are available to treat cml, even one currently in trials, that may have less side effects, that might not be so bad, that might, well, keep her alive. she didn’t respond.

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i mentioned it to a friend who wondered out loud why she would choose to die instead of taking another shot at living.
certainly, humans are not programmed to accept death, to just stand by and watch it happen, especially in situations where there seems to be choice, options, or at the very least, hope. my brother had also come to the same decision after a recurrence of liver cancer: “if i have to have treatment that will make me sick, i’m not doing it, and i need you to accept that,” he had texted, late on a snowy december night. on the most basic level, his decision made perfect sense. things weren’t going to end well anyway, he argued. he wanted to have enough energy to enjoy the time he had with his kids, maybe travel a bit. radiation, chemo, experimental drugs would make him sick and tired. fair, but so hard to just accept.

she wanted to be singing at the end of the day

at a recent cancer checkup, i sat in the waiting room beside a woman who looked to be about my age. she was wearing ripped jeans and a grey rolling stones t-shirt — the large red tongue was faded — and a bright orange head scarf that sat a bit far back on her head showing thin wisps of black hair. if it weren’t for the white hospital band on her wrist, i wouldn’t have guessed that she was a patient. she leaned over to ask about a necklace i was wearing and explained that it was her last day at the hospital. she too had decided that the quality of her life, even if it was short, was more important than extending a horribly uncomfortable one.

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“i want to be singing at the end of the day,” she said with a smile, standing up as her name was called by a nurse.
ugh.
absolutely, there is a difference between the woman from nova scotia, my brother and the rolling stones-shirt woman: the last two were facing an outcome that was certain to be grim, whether they chose treatment or not. the odds are a little less black and white for my friend in nova scotia. still, there’s a lot to go through in managing a disease before you get to the point where the options in your mind melt down to only two: quality of life versus quantity. which door you choose is a deeply personal decision, one that can challenge everyone who cares about you — maybe even the experts who provide care to you. and the comment about being misunderstood is a valid one — after all, who would choose death over life?
but perhaps that’s the wrong question. the choice is not between life or death, but simply how you want spend your life on your way to death. and if, despite all the uncertainty and bad luck, there’s a song on your lips at the end of the day, who can argue with that?
lisa machado is the executive producer of healthing.ca.
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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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