Living with chronic myelogenous leukemia (CML)

This story was originially posted on CUREToday.com and is being shared with the permission of the author. 

Certainty takes on a whole new meaning when you are living with cancer

When I was diagnosed with a rare leukemia eight years ago, I struggled with anxiety for about a year, despite a good prognosis. In fact, it was better than good. Generally well-managed with medication, chronic myelogenous leukemia (CML) is a blood cancer that most people live with until they die from something else.
Still, I couldn’t get past the scariness of it all: invasive tests, weekly cancer clinic visits, the fact that I swallowed a bit of chemo every day. Every piece of my new normal scared the crap out of me and I kept waiting for the fear to be less. Yet every morning when I opened my eyes, my stomach would tighten and, as a terrible feeling of dread neatly settled on me, I would wonder, like I did every day, how I would make it through the day.
“A high-functioning anxiety case” is how my doctor would jokingly classify me, when, in one breath, I would describe the fear and worry that weighed heavy on me, and then in the next, talk about how busy I was, as a mom, a writer and the founder of a nonprofit group for people living with leukemia. It was true. I was doing a lot, despite my anxiety. Media interviews about the patient experience, speaking to health care providers about what it means to live with cancer – I even began writing a book about how to live well with CML. I essentially took everything that I feared and wrapped myself in it, like a cloak.
The result was that I spent an inordinate amount of time thinking and talking about illness and death and the sweet uncertainty of life. But it was hard.   It seemed that I had embraced the uncertainties of life, but as my anxiety continued, it became clear that I had not accepted them.
I joined a cognitive behavior therapy group, which was appropriately called, “Courage.” The idea was to examine your fears and anxieties, understand them and change your thoughts about them in order to be happier. Finally, I’d figure out why I was so scared when my prognosis was so good and I’d move on, grab the reins of my new normal and ride off into the sunset. It sounded amazing.
Lora was the leader of the group, a passionate psychologist, about 40, who genuinely cared, but also didn’t fool around. In her class, you were going to face your fears and deal with them. There were many tears in these sessions, which was weird at first, but we all became friends, joined by the fears that were holding us back and preventing us from truly living.
There were others who, like me, were trying to get past health anxieties, but some were trying to manage fears that I had never even considered, like the woman who was terrified of large bushes because she was attacked by a bear in a forest. Or the guy whose thoughts of failure engulfed his every waking moment.
The first few weeks were spent going through a workbook on managing worry. Then, Lora chose someone at every session to talk about their anxiety. She’d challenge them using what she called the “so what?” technique. It wasn’t fun if you were the one on the spot, but it sure was cool to watch someone else peel away the layers of their thoughts and experiences until all that was left was one sentence that basically summed up the core of their fear.
I both looked forward to, and dreaded my turn.
I started by talking about how I was scared that things would end badly for me, that maybe my medication wouldn’t work, maybe things would get out of control. “But so what?” Lora asked. Well, it would be scary. “But so what?” I don’t want that to happen. “Ya, we get that. But so what?” I would die. “So what?” Well, getting there would be horrible. “OK, you don’t want to suffer. So what?” That’s it. “Nope. What else? So you’d suffer and die. So what?” My kids wouldn’t have a mom. “But so what? Kids are resilient. It would be tough, but they’d survive, right?” Yes, they would. “So what?” she kept asking. There wasn’t a dry eye in the house as she carried me down a path that was so frightening.
I don’t want them to experience tragedy.  A-ha. And there it was. Not rocket science, for sure. After all, no parent wants their kid to feel the pain of loss. But for me, the possibility of this being reality in my kids’ lives felt so close, so real. And the trickiest part of this process was that, unlike the woman with the bear fear whose “So what?” included the realization that the odds of a giant grizzly bear attack in downtown Toronto was extremely low, no one could tell me what my odds were. As Lora put it, the key to my freedom was locked in the ability to “sit comfortably in the uncertainty.”
Time has passed. I’ve worked hard to learn how to “sit” in the uncertainty, to keep my health-related fears at bay and enjoy the present. But after 2016, in which every day seemed to bring news of another death or another catastrophe in some part of the world, I am feeling those old anxious twinges again. On Christmas Eve, a dear family in our neighborhood passed away in a horrible cottage fire. I’m struggling to process all of this sadness and loss, just like everyone else. I am asking, “So what?” and unlike that class, the answers don’t offer a glimmer of hope of resolution, but rather, they only magnify the pain of loss that just seems too much. But even more than this, I have come to realize that, while on paper my uncertainty may seem more definite than yours, the truth is that we are all sitting in uncertainty. Learning how to live with it is a whole other story.
This story was written by Lisa Machado, Founder of the Canadian CML Network. To read more about the Canadian CML Network, please click here.