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Against All Odds: How I Survived Leukemia

november 29, 2019

Marie-José Filion

The Diagnosis

A Woman’s Fight Against Leukemia

I had just powered through an intense month of development work in Benin, an impoverished country in West Africa. I kept telling myself, “you’re getting older, you’ve gained weight, you don’t exercise enough— that’s why you’re exhausted.”

I came back home to Canada. As soon as I got off the plane, I headed straight to the doctor, then the hospital. That’s when I received the diagnosis: I had leukemia, and as a side effect, pneumonia. I heard the news, but I was worn out and unable to react with any emotion. Okay, I can deal with this…I didn’t put up a fight. I didn’t feel a sense of injustice. I realized that if I had been Beninese, I would have died of pneumonia well before ever being diagnosed with cancer. I felt lucky to be in Quebec.

It's Hard Not To Feel Alone

The Transition

On a couple of days’ break from the hospital, I shopped for a wig and new clothes, not fully understanding these things would become my new normal.

And so my journey began. At the beginning, I was back and forth between the hospital and my home. Chemo. Isolation. Home. Repeat. The first months were lonely, too, since my husband and kids were busy with work and school. Then my youngest daughter got a concussion, so she was also home. We supported each other. As unfortunate as the concussion was, I felt less alone.

And The Complications That Followed

Finding My Match...

The search then began for a donor. My brother and my sister were not matches. It was heartbreaking. Then one day, some good news: I had a donor! Luck was on my side. It’s funny how life works. I’d been on the bone marrow donor registry for nearly 30 years, ever since a friend was diagnosed with leukemia, but I’d never had the chance to be a donor. Now, I had one myself.

But problems and relapses were in store. There was chemo, surgery, more chemo. Things went from bad to worse when I was diagnosed with fusariosis, a heck of an infection that almost killed me. I spent seven months in hospital with no guarantee I would come out alive. All along, hope was on the horizon for a bone marrow transplant, but each complication was another setback.

It was at this time that I learned to harness my inner strength and to intensely appreciate the presence of my family and friends. I was enormously grateful to the entire medical team for their great competence, warmth, and ability to listen. I also got help from a psychologist specializing in oncology, whose support was invaluable.

Tips and Tricks to Get By

Reworking My Routine

People ask me how I coped. If you asked my mother, she’d say it was through God’s grace. She’s probably right. But I would add that all I’ve learned through my work also helped, along with all the therapy and reading I did. As an occupational therapist, I had supported a lot of people in difficult situations. As a caregiver support group facilitator, I had often discussed the importance of attitude, which proved extremely useful for me.

In order to make it through this journey, I refused to see myself as a victim, instead choosing to take charge of my life. I tried to find balance. My responsibility was to take care of myself, in whatever way I could. The challenge was to be creative and active in the process. How? By small, simple actions.

At the hospital, I built a routine for myself, just as if I were at home. Every morning, I got up and made my bed, showered, and got dressed—lipstick and wig included. At night, I changed into my pyjamas. I found hospital gowns depressing, and their open backs were definitely not my look. I made sure I felt good about how I looked. I made myself a schedule of daily activities: 30 to 45 minutes of exercise in bed, then some reading, puzzles, crochet, drawing, and Scrabble. TV only in the evenings, just like at home. And walks! For five of the seven months of my hospitalization, I was permanently attached to an IV, but I negotiated with the medical team to unhook myself for one hour every day. I used this hour to walk 4 km, outdoors whenever possible. It had a positive impact both physically and mentally. On top of that, the doctors always told me I would need to be in good shape to undergo a transplant. I often had dinner with my husband at the hospital cafeteria, which I referred to with a fancier French name. You do what you can to have fun!

Finally, my transplant was set for March 2018 at Hôpital Maisonneuve-Rosemont in Montreal. It was a huge deal, and yet the procedure itself was unbelievably simple, since it was just like a regular transfusion. But I wasn’t out of the woods yet. Given my condition, I only had a 50% chance of surviving. The journey continued.

Happy Birthday, You've Got Graft Versus Host Disease

Your Problems Don't End After The Transplant

I was lost and felt completely gone for the next two or three weeks. I was delirious and unable to recognize anyone, drifting away from this world, as my family told me later, and kept alive by an intravenous drip. I gradually emerged from the delirium, but I couldn’t swallow anything, not even my own saliva. My mouth was covered with sores in a reaction to the transplant. Even eating a popsicle was a huge challenge! But luck was on my side once again and I kept pushing through. I’m still alive.

At the end of April 2018, I finally returned home! I was weak and limited in what I could do, and I still had to visit the hospital twice a week for blood and platelet transfusions. I relished the summer from my patio, taking in the fresh air. I was lucky to be home again. There were still a few surprises along the way, including a GvHD as my birthday present in September, but the fact is, I AM ALIVE.

Getting Back To What I Love

Lucky To Be Alive

In the fall, I gradually began to take up my old activities again: painting classes, working out, volunteering, boards of directors meetings, and outings of all kinds. A year and a half later, I have less stamina than I used to, but I have adjusted my pace. More than anything, I have learned to enjoy life each day and not to sweat the small stuff. This summer, I started cycling again and went to Europe—two things that I love!

I was lucky to be treated in Quebec, by kind, competent people.

I was lucky to have such a strong support network from my husband, my children, and my friends.

And I am so lucky to be alive.

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