Michelle Burleigh

ASK MY FIANCÉ, MARVIN, how he got through the days when there was a possibility that I wouldn’t survive cancer and he’ll say it was a careful combination of faith, positivity, being involved in my care and the love of our sweet girls. “Getting away from the hospital to spend time with Isabelle and Victoria was a lifeline for me,” he says. “They helped me recharge and be strong for Michelle.”

I also found strength in our girls, who were five years old at the time. But for me, it came in the form of fierce determination as I focused on how much they needed me and on the things we had planned to do, like go on a Disney cruise. When I found out how close I had come to dying, I was terrified, but I knew I wasn’t done here yet.

I was nine days away from my 37th birthday when I was diagnosed with acute promyelocytic leukemia (APL), a subtype of acute myelogenous leukemia, and one of the rarest forms of the disease.

I hadn’t been feeling well for three weeks. I was having headaches, bruising easily, developing cold sores that wouldn’t heal and I was so tired. In retrospect, I should have known that something was wrong, but as a busy mom and career woman, I didn’t have time to be sick. So I kept going. It was a very heavy menstrual period that sent me to the emergency room.

I knew I was in trouble when the doctor asked how old my kids were. “It’s never easy to tell anyone this,” she said. “You have leukemia.” My first thought was, I’m going to die.

The Juravinski Hospital in Hamilton, Ont., is where I met Dr. Brian Leber, the man who would save my life. He said that APL was the most curable form of leukemia and the prognosis was a 90 per cent full recovery, but I had to make it through the first 10 days of treatment. He also said that had I not gone to the hospital when I did, I would likely have had an internal bleed that would have killed me within 24 hours.

I spent 22 days in hospital, and in mid-January 2018, I finished the first phase of treatment. By the end of the month, I was in remission and the cancer was undetectable. I am now working on maintaining remission.

I have learned a lot through all of this, but one thing is for sure: When I am on my actual deathbed, I know that what will matter most is the time Marvin and I spent together, living life, having fun, appreciating our family and watching our kids grow. That’s what I want to remember on my dying day.

MICHELLE BURLEIGH lives in Georgetown, Ontario, with her fiancé, Marvin, and two beautiful daughters. Since being diagnosed with APL, her life purpose is now. She shares her experiences through her blog, So You’ve Got Acute Blood Cancer…Join The Club!

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An acute promyelocytic leukemia survivor reflects on fear, courage and the future.

Finding Strength in Family

Essentially, the survival rate of acute promyelotic leukemia (APL), assuming you make it through diagnosis and the first phase of treatment, is somewhere between 80 and 90 percent, according to the 

. While I have not been able to find a conclusive study that specifies the rate of early death prior to diagnosis, I was able to find one study by the American Society of Hematology's journal, 

, that predicts, “an early death rate of about 5 percent to 10 percent within the first month of starting ATRA, mainly from intracranial bleeding.”

When I received the news that I was suffering from APL, I was told the same. Over the next four months of treatment, I was assured by a number of people that, “Of all the leukemias to have, this is the one you want to have!” I think the intention of such a comment was to make me feel comforted. However, the mind of a newly diagnosed leukemia patient fighting for their life is a complex one. I couldn't give my leukemia back and I didn't get to exchange it for another one anyway, so, there wasn't a ton of value in such a statement to me. However, over the weeks and months to come, it crept into my thoughts often.

I can remember sitting in outpatient day services during the second phase of treatment, speaking to a man who had a different blood cancer. He told me his story. He had refused to accept the standard protocol offered by his oncologist. Instead, he cut toxins out of his life and started juicing. He also started using medical marijuana, which he swore up and down is what helped him achieve and stay in remission for six months. His wife didn't like him using it, though, and pressured him to stop. Within weeks of stopping, he relapsed and felt forced to agree to the recommended protocol. The middle-aged man bawled without control as he spoke. It was one of the saddest moments I had experienced so far. And, it was also an epiphany for me. I felt guilty.

I recalled all the times I had been told how lucky I was to have APL. Here I was sitting across from this man eating my soup, which tasted great, drinking my tea, knowing that within the next couple weeks, he likely wouldn't be able to eat or taste anything. He would probably have nausea. Maybe he would even have mucositis. He would lose his hair and who knows how long that would go on for. What I did know was, although I experienced nausea, I didn't anymore; although I had experienced mucositis, I didn't anymore; and I could taste. My hair had fallen out, but would grow back soon, and I would likely never experience those things again. How lucky was I?

Today was a challenging day. We increased my dose of the maintenance drugs this week. My stomach feels unsettled. I've been having chest pains and strange headaches again. I can’t walk outside in the mornings and I've been experiencing tightness in my chest. I did manage to walk around the mall for an hour, though, and that is better than nothing — better than many others in my position.

Am I lucky? Yes, I am. I am alive. Does my “luck” discount my experience? No, it does not. Do I feel sorry for myself sometimes? Yes, I do and that's OK. The fact is, I just about died...twice. I almost didn't make it to diagnosis. Then, I became that 5 to 10 percent statistic when my heart rate dropped dangerously low. Yet, there I was sitting in the hospital being pumped with arsenic trioxide to combat my disease, feeling guilty that the man sitting across from me would never be told how lucky he was.

At the end of the day, everyone's personal experience is their own. No one is the same, diseases are different, protocols are different, starting health is different and mind frame is different. Associating luck with any disease is unfair. While we cannot change the words uttered by others, we can change how receive them. In a society that has become dispassionate, having compassion for others is a beautiful thing but it doesn't have to come at a cost to us, ourselves.

Associating luck with any disease is unfair.

Michelle Burleigh

Finding Strength in Family

Survivor's Guilt

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