Cured

I’ve been waiting for five years, less two days to hear the word – “cured”. As the possibility of hearing it becomes tangible, I find myself having feelings. Notice I said, feelings, and not feeling. There are many of them. So many, in fact, that I find myself surprised by which one wells up in me at any given time. I’m not entirely sure why we have such a hard time accepting that having more than one emotion at once is acceptable – dare I say, even normal. Let’s see if I can unwrap it all.

November 18, 2017, was the first day I noticed something didn’t feel right. It wasn’t pain. It was just…discomfort. No matter how I sat, stood, or lay down, my mid-back was just uncomfortable. Every year, without fail, I find myself looking at a calendar on that specific day and it’s like being slammed by a wrecking ball when the past comes crashing into my consciousness, “I’M BACK!!!” And once my system re-calibrates, I recall that discomfort I felt was my spleen becoming crowded by immature blood cells that would never grow up and die on their own, such as nature intended.

November 25, 2017, was possibly the most challenging workout I have ever done in my life. Though, I would not feel the worst of it until the next day when my piriformis, a muscle in my right hip locked and stayed that way for days. Thanks to those pesky immature blood cells there was no longer enough oxygen circulating in my body to repair the micro tears in my muscles, as we all experience with muscle fatigue, after that last workout.

Every single day was horrific following the day my muscle locked. Be it from excruciating pain or the medical professionals who, I can only speculate, deduced that I was too young to be concerned about anything outside of a finicky muscle. Still, moments burned into my memory of being at the local hospital and being handed a prescription for Dilaudid – a narcotic to deal with pain, which I would later become intimately familiar with and to this day miss just a little bit. Sitting in my family doctor’s office nearly a week after the muscle injury, being prescribed Lyrica and Meloxicam. I was sure Lyrica was intended for nerve pain, yet I had not expressed any concerns about nerve pain, nor had the doctor mentioned it.

Discovering the first bruise, the first broken blood vessel and then bleeding uncontrollably, followed by what felt like an uphill battle against humans sworn to do no harm who made me feel like I was climbing up a mucky, soggy mountain with two broken legs. And finally, the words…’Yes, it’s leukemia.’

At times over the last two years, I have needed to remind myself that this is, indeed, my story. That these were events that I experienced firsthand. But the days, weeks and months…years have turned some of the feelings fuzzy. It sort of felt like the less intelligent parts of our brain that activate emotion when we are watching a movie, and we try to hide our tears from those around us because we feel silly crying with our eyes glued to the make-believe scenes playing on the screen. Like, intellectually I know it’s my story but it felt like the manuscript for a suspense-drama on Netflix.

But this year, it feels different. The emotions I had evaded over the last while are back with a vengeance. I would not have thought at the time that I was evading emotions, yet as the five-year mark approaches, I find myself extremely anxious. Maybe it’s because it feels too good to be true. Maybe it’s because the further away those memories get, the less I worry about the sun, alcohol, ice cream…the things I’ve staunchly avoided for fear of reoccurrence, secondary cancer or a whole new cancer. Or maybe it’s because I’ve been holding my breath.

I remember my then-boyfriend, Marvin, my dad and I sitting down with my oncologist to discuss the plan shortly after being admitted to the hospital in 2017. In the course of the conversation, the oncologist said, ‘Also, you’re going to get an infection so expect it. Everyone gets an infection.’ If you’ve been on this rollercoaster with me long enough, you may be able to guess how I responded to that particular statement. Quite simply, it was a challenge and I accepted it. All these years later, there may be a boy or two who still harbours a micro amount of resentment regarding this particular personality trait of mine…frankly, I wouldn’t blame them if they did. But that kind of grit, that absolute defiance likely triggered by growing up with very young parents who were also just trying to figure life out, is what I believe saved my life.

Miraculously, I never did get an infection but herein lies one of the major points of conflict for me. I have been working through honouring my experience. You see, there are only so many times you can hear, “If you’re gonna have any leukemia, this is the one you want to have” before it begins shaping your own reality. On the one hand, I didn’t get an infection, most of the time I didn’t have mucositis, most of the time I could taste food just fine. Ok, sure, my heart just about stopped. But it didn’t. So, how could I complain about my experience? Especially in comparison to others.

Survivors’ guilt is insidious and I knew it. I lectured myself repeatedly while in treatment that I could not take on guilt related to someone else’s experience just because my prognosis was more favorable, and I held that line well. Insidious, in reflection, is too kind a term to define how being told my treatment was, ‘unconventional’ or ‘not real chemotherapy’, or how lucky I was to have THAT cancer. Not only did I not compare my circumstance to others, I completely discounted my experience for how intense, horrific and emotionally devastating it was. I can recall when I started learning about the experiences of others. Some were lucky enough to catch their cancer early and avoid severe consequences. Some were not so lucky. I remember learning about someone diagnosed with breast cancer, stage 2 who after six infusions, the tumor had disappeared. There were also those who were told they would be in treatment for the entire rest of their lives with varying treatment types that would cause a multitude of side effects to contend with for the rest of their days. But only one month ago did I ever meet someone who took more infusions than I did. How could anyone call any cancer treatment easy but I couldn’t stop thinking about that person who took six infusions over a period of weeks when I had taken that many and more in the period of six days.

So, here I am, days away from my five-year cancerversary and I’ve just started unpacking my feelings related to my cancer experience. That it was gruelling but not in the traditional sense (according to others). That I didn’t really get kicked in the teeth the way many do but it was horrific all the same. That I avoided infections and my heart didn’t stop but I will never be discharged from care because I will always be considered at risk…not to mention my immune system is permanently damaged which will always put me at risk. What I went through was hell. Utter hell, and it deserved to be acknowledged as such, processed as such, fully in my intellectual and emotional being.

Yet, while I find myself working through the reality of my experience. I also feel a significant amount of gratitude. It’s nearly overwhelming at times. My life has changed in ways I could never have imagined. I found purpose, direction, inner strength and clarity I had strived for but no matter how hard I tried, I could never access it before. Today, I am an entrepreneur, a patient advocate and lived experience advisor to healthcare organizations, and not least of all, an author. I even overcame my (former) biggest fear by speaking to an audience at a conference recently on strategies for coping with difficult emotions during patient advocacy. Through radical self-belief, shutting out the voices of others who would have me stay in my veiled reality for their comfort, and letting in the voices of those who have walked this path and discovered the things I sought out, and a whole lot of work, I’ve begun creating a reputation in a space that allows me to positively impact lives, inspire people and hold others accountable to better care.

Earlier this year, in September, I was approached by AstraZeneca who wanted to book a meeting with me to describe what they are doing to protect immunocompromised people during the forgotten pandemic. They also invited me to sit at the table of a patient action group (PAG) looking to support and protect immunocompromised people, led by the co-founders of 19 to Zero, a non-profit coalition focused on shifting the public perception toward healthier behaviours. When I joined my first PAG meeting (their second meeting), I found myself at the virtual table with representatives of some of the largest disease-specific non-profit organizations in Canada. I wondered if what I felt in that meeting was anything like what teenagers feel when they get front-row tickets to a Harry Styles concert…

There I was, little old me, sitting at the table speaking on behalf of, representing over fourteen hundred people in my FaceBook support group, Immunocompromised People Are Not Expendable, and even beyond the safety of our beautiful little community, representing a million Canadians who are
immunocompromised. It was and remains an absolute dream. They couldn’t see it on the screen of the virtual meeting but I pinched myself as though I might wake up…but I didn’t. I was there.

Five years ago, less two days, I sat in a hospital bed, unbeknownst to me, having my eyes checked almost on hour of every hour as the nurses and doctors waited for signs of bleeding in my brain, and I made myself several goals. I promised myself that when I lived through my cancer diagnosis, I would accomplish several things. Among them, I would make a positive impact on Canadian healthcare – though I had no idea what that would look like at the time. I am grateful and dare I so brazenly say, uber proud of myself. I also set my sights on marrying the love of my life, which I did in the presence of our children and our closest family and friends in 2019. We also agreed that we would take our kids on a Disney cruise.

Though I may or may not hear the words I so desperately long to hear, “You’re cured”, especially after learning recently that for the rest of my days, I will never be discharged from the care of my oncology team, I am a strong believer in taking the wins as they come. I can’t think of a better way to celebrate my five-year cancerversary than by boarding a cruise ship, laden with ornate Christmas decorations and accompanied by some of our most magical friends – Minnie and Mickey, Donald and Daisy, Goofy and Pluto, and from what I hear even Rapunzel and some of her friends. And though the world is still fragile after what has been an incredibly hard time for all, and especially the amazing little community I continue to fight for, we will board a plane donning n95s in four days, on our way to check that Disney cruise off the bucket list to celebrate, not only all the little wins but the biggest win of all; life.

As my cancerversary approaches, another birthday, and another Christmas season, I am beyond elated that I get to watch the joy and wonder on the faces of my children as they board the Disney Magic cruise ship. But there is only one thing more I wish I could do. No matter how hard I strive for it, or how much I wish for it, I will never be able to achieve it. I will never be allowed to donate blood. This is a hard reality for me as it was the donations of more than a few generous humans who made it possible for me to continue experiencing life. I deeply wish I could repay the favor but know I never will be able to, so I ask of you to join me in celebrating life this holiday season by donating blood. Over 50,000 appointments need to be filled right now. Help me celebrate life by giving someone else the opportunity to live more of it by visiting the Canadian Blood Services website, www.blood.ca to book your appointment today.

In the meantime, I wish you all an incredible holiday season filled with love, joy and great food, and we will meet again in 2023.