No One is the Same

by Michelle BurleighSurvivor, Acute Promyelocytic LeukemiaMay 27, 2022View more posts from Michelle Burleigh

The survival rate of Acute Promyelocytic Leukemia, assuming you make it through diagnosis and Induction (the first phase of treatment), is somewhere between 90-95% chance of full recovery. However, one study by the American Society of Hematology’s website Blood Journal, predicts “an early death rate of  5-10% within the first month of starting All Trans Retinoic Acid, mainly from intracranial bleeding.”

When I received the conclusive diagnosis that indeed, what I was suffering from was Acute Promyelocytic Leukemia, I was told the same almost verbatim, except being diagnosed in the high-risk category meant my prognosis was 85-90% chance of full recovery—provided I lived through the first ten days of treatment. Over the next four months, I was told by a number of medical professionals 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. Initially, I did not have any thoughts specific to this piece of information. I just kind of figured it was what it was. I could not give my leukemia back and I did not get to exchange it for another one, so there was not a ton of value in such a statement. However, over the weeks and then months, it crept into my thoughts fairly regularly, and eventually I noticed I felt guilty.

I can remember sitting in Outpatient Day Services receiving treatment during Consolidation, the second phase of treatment, and speaking to a man who had a different type of blood cancer. He was seated in a chair directly opposite of me. He told me his story, like so many did, about his fight. How he 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 did not like him using medical marijuana, though, and pressured him to stop using it. Within weeks of stopping, he relapsed and was forced to accept the recommended protocol. If I were to guess, he was likely about 50 years old, and he bawled without control. It was one of the saddest moments of all the time spent in the hospital. It was also an epiphany for me. I felt deeply guilty as he wept.

I recalled all the times I had been told how lucky I was to have APL, and here I was sitting across from this man eating my Tim Hortons soup—which tasted delicious—and drinking my tea, with no discomfort whatsoever. The treatment protocol for APL, while long and quite intense, used an unconventional type of chemotherapy called Arsenic Trioxide. While I had taken four doses of a strong chemotherapy called Idarubicin thanks to the prolonged journey to diagnosis, I had lived through it and recovered well. But this man in front of me would likely not be able to eat anything easily in the coming weeks. He would likely have nausea, mucositis, or the chemotherapy would mess with his taste buds and everything would taste awful. He would probably lose his hair, and who knows how long that would go on for. What I did know was although I had experienced nausea, I did not anymore, and although I had experienced mucositis, I did not anymore, and I could taste everything properly. My hair had fallen out but grew back, and I would likely never experience those things again. How lucky was I?

Very lucky. Despite grim odds, 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 is ok. The fact of the matter is, I just about died…twice. I almost did not make it to diagnosis. Then, I just about became that 5-10% statistic when my heart rate dropped dangerously low while receiving Idarubicin. Yet, there I was, sitting in the hospital being pumped with Arsenic Trioxide to combat my disease, and I felt guilty that the man sitting across from me was about to go through another horrific battle.

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, and associating luck with any disease is unfair. While we cannot change the words uttered by others, we can change how we receive them. Having compassion is a beautiful thing, but it does not have to come at a cost to you.

Until next time, you are doing great. You’ve got this!

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