Suleika Jaouad Honors Blood Cancer Heroes With CURE and Blood Cancer United

Suleika Jaouad, the Emmy-winning journalist and author of “Between Two Kingdoms” and “The Book of Alchemy,” received her first diagnosis of leukemia at the age of 22 and is now facing cancer for the third time in 15 years.

She recently delivered the keynote address at the inaugural Blood Cancer Heroes celebration, held in partnership with Blood Cancer United to honor those who make a profound impact on people living with leukemia, lymphoma, multiple myeloma and myeloproliferative neoplasms (MPNs)/myelodysplastic syndromes (MDS).

After the Blood Cancer Heroes event, she sat down for an interview with CURE to discuss the event, what she hopes fellow patients and survivors can learn from her story and more.

What was your reaction when you first learned that you had been invited to speak at the inaugural Blood Cancer Heroes event?

Oh, I was so honored. It's been such a privilege to get to work with Blood Cancer United as they usher in this new wave of inclusion that encompasses all the blood cancers, not the leukemias and lymphomas only, and also to get to do it in partnership with CURE. Like many patients, anytime I'm in a waiting room at the doctor's office, I see the CURE magazine. And so, to me, those two organizations coming together for the first inaugural event of this nature is a testament to how important it is to have partnerships, and also how far we've come with regards to blood cancer advocacy. And so it was the first, and I hope it won't be the last. It really left me feeling so inspired and grounded back in the why of why we all do this work.

You have been writing and reporting throughout your cancer journeys. How has that experience, starting from your early 20s, helped shape the way that you connect with patients today?

When I graduated from college, I had dreams of becoming a war correspondent, but almost exactly a year to the date after I graduated, I found myself instead being admitted to the oncology unit for the first of many very long hospital stays, and obviously, I wasn't able to become a war correspondent in the way that I imagined. I wasn't allowed to leave my hospital room, let alone board a plane and to report for from some far-flung conflict zone.

But, in the course of keeping a journal and really reckoning, not only with what was happening in my body and what it means to be a patient, but also beyond just my own personal experience, what it means to be sick and to navigate a healthcare system that isn't always designed to make space for your whole self and where there are a lot of barriers to entry as a patient, whether that's financial or geographic or you need access to a medication or to a treatment protocol that you can't have access to, there are often more questions than answers. And so, though it wasn't anything like what I'd imagined, I decided that I was going to try reporting from the front lines of my hospital bed, both about my own personal experience, but using that as a launching pad to examine some of these bigger questions and more universal experiences of what it means to be sick.

What part of your story do you hope resonates the most with people who are currently navigating their own diagnosis?

When you get a diagnosis, there's such a focus on the physical body, as there should be, cancer is an emergency and it needs attending to. But what I wish I'd known at 22 was the importance of thinking just beyond physical health, thinking about mental health, about the importance of community when you're going through something like this, about the toll it can take, not just on the patient, but on the caregiver, on an entire family unit, on friendships and romantic relationships. And so, the human face of cancer is something that for me has been really important to write into.

And more than that, something that inspired my first book, my memoir “Between Two Kingdoms,” was what happens once the cancer treatment is over. I was really interested in survivorship because when I first emerged from treatment after four years, there was a sense that I was done, it was time to move on with my life, and yet I was really struggling with re-entry, with figuring out how to navigate both the visible and invisible imprints of my disease, to navigate grief and post-traumatic stress disorder, which I didn't even know was a thing in a medical context.

So, we talk about the struggles of re-entry in the context of veterans returning from war, or even prisoners being released back into the world after a long sentence, but I don't think that at the time, there was much discussion of the challenges of survivorship. Of course, since then, I've relapsed, not just once, but twice, and my leukemia is now considered incurable. I will be in treatment for the rest of my life, however short or long, which is its own kind of in-between place. And so, my hope is that my work has offered companionship in what can be a profoundly isolating experience, and that it's given language to some of the things that feel unnameable or hard to talk about out loud, be it fear or depression or the struggle of being in a relationship while being in treatment. All those things, while they're not specifically about cancer, go hand-in-hand with the challenge, not just of surviving, but living. Because, after all, you know, what's the point of of surviving, if it's not to live as full and meaningful of a life as one can?

Transcript has been edited for clarity and conciseness.

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