Facing Leukemia Again, Suleika Jaouad Lives Every Day like It’s Her First

Suleika Jaouad, an author and patient advocate, is facing cancer for the third time in 15 years; however, she is choosing to embrace every day as it comes.

“I've had to adapt a gentler mindset of living every day as if it's my first, of focusing on the small joys, on the things that fill me with a sense of curiosity and wonder,” said Jaouad, author of the New York Times column “Life, Interrupted” as well as the books “Between Two Kingdoms” and “The Book of Alchemy: A Creative Practice for an Inspired Life.”

Jaouad, who was first diagnosed with leukemia at age 22, has also partnered with Blood Cancer United, the organization formerly known as the Leukemia and Lymphoma Society.

She recently sat down for an interview with CURE to discuss this latest chapter in her cancer journey.

Transcript

How did this latest chapter in your cancer journey begin, and what is your mindset like this time around?

Almost a decade after my first bone marrow transplant, I learned three years ago that the leukemia was back. I knew that my prognosis was not good. I wasn't able to find a different donor, though I was very grateful to have my brother Adam step up to the plate a second time around. But unsurprisingly, because of that, I had another recurrence a year ago, so this time around, I will never be considered cured. I'm managing my disease, and I think, like a lot of patients who find themselves in this situation, putting my faith in the new research that's under foot as we speak, and the hope that new treatments will make themselves available.

All that being said, in some ways, I feel lucky to be experienced at the day-to-day aspect of managing illness, and I've chosen to approach this recurrence in a very different way than I did when I first got sick at 22.

Instead of focusing on surviving, I'm very much making it my priority to focus on living. And while an illness is a part of my life, it is not the central focus of my life. I think too often when you receive a life-threatening diagnosis, and certainly when it comes back three times, people reach for phrases to comfort you, to help ease that sense of overwhelming uncertainty, things like “God doesn't give you more than you can handle,” which is a particularly difficult one for me, because sometimes I want to say, “You telling me that is more than I can handle right now.”

But another one is this idea of living every day as if it's your last, which I think comes from a good place, but for me, it's always created this sense of anxiety and urgency around time, this notion that you have to make everything as meaningful as possible, and you have to carpe diem every day. I've had to adapt a gentler mindset of living every day as if it's my first, of focusing on the small joys, on the things that fill me with a sense of curiosity and wonder to greet the day like a little kid might.

When I do that, the fear of uncertainty lessens and the sense of mystery and delight at the unexpected things that can unfold alongside an illness open up. Nothing about navigating an illness like the one that I have is easy. I don't want to sugarcoat that, but it is eased by the knowledge that there's a community of people like the folks at Blood Cancer United, who are working tirelessly to advocate on behalf of patients like myself, be it research or supportive services.

Transcript has been edited for clarity and conciseness.

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