acute promyelocytic leukemia: 'i was just so desperate to hold on to life'
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michelle burleigh was determined to survive her leukemia diagnosis for her children. supplied
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michelle burleigh was diagnosed with acute promyelocytic leukemia in 2017, a rare and aggressive type of acute myeloid leukemia where too many immature blood-forming cells in the blood and bone marrow lead to too few platelets and deficiencies in clotting. she had to push the system to get a diagnosis and by the time she made it to the cancer centre, she was told she had an “85 to 90 per cent chance of full recovery” as long as she made it through the first 10 days of treatment.”
now the 41-year-old georgetown, ont. woman, a business advisor in the financial industry for 20 years, has launched a website, soyouvegotcancer.ca, and is publishing a book this november — the road to courageous living: learning audacious self-love and the skills to harness personal success — to help others through their cancer journey. this is her story.
this story has been edited for length and clarity
it was mid-november 2017, only about three weeks before my diagnosis, when things started not feeling right. i had a strange feeling in my mid-back. i wouldn’t even say it was pain, it was just uncomfortable. i was working out at the gym, and i noticed that i was really struggling to get through a pretty standard workout.
i was just about to turn 37, so i figured i’m not getting any younger — and it was busy. we were coming up on christmas and my job has always been very fast-paced, the kids were doing christmas shows, and we had taken over a tradition from my grandmother baking christmas goodie baskets for family and friends.
about a week after i had that funny feeling in my back, i went to the gym, came home and baked with one of my daughters for about three hours, and the next morning. i woke up with extreme pain in my lower back.
by midday, sitting down was excruciating, standing up was excruciating, walking was excruciating. i just assumed that i had locked a muscle somewhere in my lower back. i dealt with that pain that day and the next and then i went to the hospital. the doctor diagnosed a locked muscle in my right hip, and gave me a painkiller and a muscle relaxant.
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i took those for five days before i went to my family doctor — i had to take that entire week off work because i couldn’t drive because of side effects. she asked me a bunch of questions, confirmed the emergency doctor’s assessment of a locked hip and changed the medications to something that would allow me to function. one of the medications that she prescribed me was called meloxicam, which is ibuprofen-based. (editor’s note: ibuprofen can increase the risk of bleeding, particularly if platelets are low)
i continued taking the heavy-duty stuff through the weekend and then switched over to the meloxicam. about 24 hours after taking the first dose, i noticed a couple of very unusual bruises on my leg. i called my doctor’s office the next morning and explained that i had started taking this medication, noticed the bruises and was wondering if it was medication-related.
the office manager told me that she would have a conversation with the doctor and call me back. when she called, she told me the doctor said that the bruising was probably not the medication. she also said that if it gets worse, to call the pharmacy. the next day after work, i noticed more unusual bruises on my arm and on the back of my shoulder.
i started googling at that point and i looked at the information sheet that you get with medications that said if you experience any of these symptoms, contact your doctor immediately — one of the first things was unusual bruising. i was pretty ticked because i felt like what was obviously a concerning side effect was basically dismissed. when i called my doctor back, i wouldn’t say that i was the best version of myself, and the office manager scolded me for my tone before offering me an appointment to which i politely declined.
by the time i went to bed that night, i had a bruise probably a little bigger than a toonie (a $2 coin) that was a deep green colour on my leg. i also noticed little red spots on my arms. in the morning i called telehealth, which unequivocally, without question, saved my life. at the end of the assessment the nurse recommended that i go to the nearest emergency room as soon as possible.
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i got my daughter ready for school, dropped her off and i drove myself to the georgetown hospital. i sat down with the triage nurse and told her the story: that i locked a muscle in my hip, then started taking this medication and about 24 hours afterwards, i started bruising. i also mentioned that i was also having heavy menstrual bleeding. she said, “so you’re here for a heavy period.”
i told her that i needed to see a doctor. her response was, “well, we’re not very busy this morning, so i guess we can take a couple of vials of blood.” the registration nurse comes in, registers me and tells me to go sit in the waiting room to be called in. i leave the triage area and go straight into the washroom because i’m bleeding, and i stayed in there until i heard my name called.
when the doctor came into the examining room, she asked me some questions and arranged to have blood work done. she was back in 30 minutes and said that something “looked funny” in my blood — i had almost no platelets. platelets are what causes your blood to clot. i was literally bleeding to death because my body didn’t have any platelets. then she said that it could be something as simple as “my spleen eating up my platelets, or it could be cancer.” just like that.
i remember thinking to myself, i really hope it’s not my spleen because i don’t want a scar on my chest before i get married. cancer didn’t even register. she said that they didn’t have the facilities to do the proper blood work, so they were going to courier my blood to another hospital.
about an hour-and-a-half later, the emergency doctor came into the room and asked if i needed someone there with me to have the conversation, and if there was someone who could pick my children up after school. it’s the worst case scenario, isn’t it, i said. and she said, yeah it is, you’re in pretty bad shape and you’re going to need to immediately go to a cancer centre to start treatment.
getting married to her then-boyfriend, marvin, was one of michelle burleigh’s motivations to live. supplied
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i called my husband marvin — who was at work — and told him that he needed to drop everything and come to the hospital. and he did. then he and i drove to juravinski cancer centre in hamilton, and the drive was awful. my mind was racing faster than it ever has before because my life immediately changed. i needed to make arrangements with all of the people in my life to make sure that the rest of it continued to run in my absence. i had to make arrangements for my daughter to be picked up from school that day. and i was frantic about my job. i called my boss and said, please don’t stop sending me work. i was just… honestly, i think i was just so desperate to hold onto life.
as soon as i was admitted, the doctors started treating me for a type of leukemia called acute myeloid leukemia (aml), one of the more common types. i began taking oral medications for aml while i was basically being pumped full of blood products because my red blood cell and platelet counts were so low. i spiked a fever as soon as i was admitted, so they were also giving me antibiotics.
my liver started to fail soon after —my system was in the process of essentially shutting down.
i can remember thinking to myself very specifically that this is complete and utter nonsense. we spend our lives believing that we’re supposed to live our lives a certain way and we’re supposed to achieve certain milestones. i had spent so much of my life trying to meet the expectations of other human beings, and there i was in the hospital dying and i had accomplished so little or had lived such an inauthentic life trying to meet those expectations.
the reality is that 25 years ago, my leukemia diagnosis would have killed me, but treatments have improved so much.
i had a bone marrow biopsy done a couple of days later to find out what type of aml i had. it turned out to be acute promyelocytic leukemia, a very rare subtype, where new blood cells that get made never mature. so the blood cells accumulate and pack the bone marrow with immature cells so that new healthy cells don’t have the opportunity to grow.
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the oncologist said that it was a good thing that i came in when i did because it was likely that i would have sustained a brain bleed the next day that would’ve killed me. he said that i had an 85 to 90 per cent chance of full recovery as long as i lived through the first 10 days of treatment.
it was terrifying. it’s like the timer started and every second after that was a waiting game.
the oncologist explained that my treatment course would consist of two different chemotherapies as well as supplementary oral chemotherapy. the first phase of treatment would be 36 days in hospital and would include four doses of the chemo nicknamed the “red devil” [named for its bright red colour and harsh side effects]. i took four doses of that in the first seven days which also nearly killed me. my heart rate went down to 38 beats a minute and i was walking around in the hospital with a heart monitor because the doctors were just waiting for me to drop.
then, between the third and fourth dose, i started a 30-day course of arsenic trioxide, another type of chemotherapy drug. next was a three-week break, and then came the second phase of treatment — which was 30 consistent days of arsenic trioxide. and the third phase was 30 doses of arsenic trioxide over a six-week period with another three-week break.
i went on two years of maintenance therapy where i was there once a week for checkups for a period of time. as those two years progressed, the frequency of my visits declined.
so all in all, it was two-and-a-half years.
‘i needed to have non-negotiables’
there were times when i was up all night and my brain would be going and i’d be thinking some pretty awful, terrifying things. so i decided that i needed to stop focusing on that stuff. what it boiled down to was i needed to have non-negotiables that i needed to live for. like, here are things that must happen in my life. i needed to get married. my now-husband was my boyfriend when i got sick. i wanted to take my kids on a disney cruise and i wanted to see them graduate post-secondary school. that was my mantra that got me through the nights
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i wouldn’t be here if it wasn’t for my kids. i was determined to live for them. i could not accept a life for my kids where they did not have the opportunity to learn the things that i intended on teaching them.
for anyone worried about their health, nobody is going to care more about your health than you do. there are too many patients out there who are treated the way that i was leading up to my diagnosis. don’t let people invalidate or dismiss your concerns. keep asking questions until you get the answer that feels right. and give your intuition credit — being connected to it could very well save your life.
check out michelle’s blog at soyouvegotcancer.ca.
karen hawthorne is a toronto-based writer.
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