
Suleika Jaouad Shares the Story of Her Leukemia Journey

Key Takeaways
- Suleika Jaouad partners with Blood Cancer United, valuing their inclusive approach to all blood cancers and the community support they provide.
- Emphasizing community, Jaouad finds strength in shared experiences and advocates for mental health support and self-advocacy in cancer management.
The author and advocate, facing leukemia for the third time in 15 years, sat down for an interview with CURE.
As Suleika Jaouad faces leukemia for the third time in 15 years, she is sharing her story with CURE.
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,” was first diagnosed with leukemia at age 22. She has partnered with Blood Cancer United, the organization formerly known as the Leukemia and Lymphoma Society.
She sat down for an interview with CURE to discuss her cancer journey, her advocacy work and more.
CURE: What is it about Blood Cancer United that makes you excited to partner with them?
Jaouad: So, first of all, I really appreciate the name change. I was initially diagnosed with myelodysplastic syndrome, which is a rare bone marrow disorder and a disease that turns into acute myeloid leukemia. So I'm very thrilled that the name is reflective of all blood cancers, not just the more commonly known ones like leukemia and lymphoma. From the early days of falling ill in my 20s, I had the privilege of joining forces with Blood Cancer United during a lobbying day on Capitol Hill. My family was a part of Light the Night, shortly after my first bone marrow transplant.
I think, like a lot of patients, one of the most challenging aspects of being sick, especially when you're young, is the sense of isolation that comes with such a diagnosis. To feel part of a village, not just of fellow patients and caregivers, but advocates who are doing the good work, means so much, because it really does take a village. It's such a cliché to reach for that phrase, but I think when it comes to something like blood cancer, it's a cliché for a reason, and you learn that from day one of diagnosis as you get to know the many people who populate that village, be it friends and family or doctors and nurses and social workers.
You've taken something that is a solitary activity in journaling, and you've turned it into a communal pursuit. As a patient and survivor, how important is finding a sense of community?
I think it's everything, and I don't think it's an exaggeration to say that it can be the difference between life and death. We've been in a loneliness epidemic, as the Surgeon General Vivek Murthy called it, predating the pandemic, and it certainly postdated it as well. But when you add illness to that equation, I think the sense of being alone in your suffering, even when you're surrounded by people, can be overwhelming. One of the first difficult lessons I learned when I got sick at 22 was that the people I expected to be there weren't necessarily, and maybe by no surprise, because the people I was playing beer pong with in college were not necessarily the ones sitting at my hospital bed as my hair was falling out in clumps. But that being said, what struck me more were the number of people, of friends and neighbors, who showed up out of the woodwork. That early experience of illness showed me the depth and quality of friendships and relationships that I wanted to have, and I made it my study to figure out how to build as big and as beautiful of a community as I could for myself.
Journaling was a small piece of that. Yes, it's typically thought of as a solo endeavor. For me, it really took flight in the form of a 100-day project I did while in the hospital with my friends and family, and now, in the work that I get to do with a much bigger, more global community. But I think when we dare to be vulnerable about the things that we're facing, whether it's illness or some other life interruption, we learn again and again that we're more alike than we are different.
You are in a new chapter of your cancer journey. How did that begin?
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, I'm 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 kind of greet the day like a little kid might. And 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.
What is your treatment experience like these days?
I do five days of chemotherapy each month. I go in for regular testing, and at some point, I will be getting a third bone marrow transplant if and when I'm able to find a bone marrow donor. There's an issue of diversity and representation within the bone marrow registry, which is something I'm really passionate about, but I've gotten to witness firsthand the kind of progress that can happen in a decade.
The treatment that got me into remission three years ago, [Venclexta (venetoclax)], did not exist when I was diagnosed at 22 and it got me into remission in one month with minimal side effects and no hospitalization. That gives me hope for the future and hope for all the things coming down the pipeline.
What advice do you have for someone who's beginning their cancer journey?
When I first got diagnosed, I was focused on treating and hopefully curing my leukemia. What I wasn't as focused on was the impact it would have on my whole self and on my whole life; so, my very first piece of advice that I give to patients is to seek out support groups, to find therapy, to make sure that you're attending to the more invisible imprints of illness on your mental health, on your work, on your whole self. The second thing is that no matter how brilliant and wonderful your medical team might be, learning to advocate for yourself is a crucial part of becoming a patient.
I learned that through the misdiagnoses that led to my actual diagnosis. I learned that in Googlinglate one night the side effects of the chemotherapy I was about to start and learning that they were going to make me infertile, and having to push to make time for fertility preservation treatments. These are all things that maybe seem like an aside to cancer, but to me are an important part (to return to that distinction between surviving and living) of making sure that you are taking into consideration who you are as an individual, not just as your medical record number and whatever your particular priorities might be.
In the essay "On the Body," you write about how much information you didn't have at the start, regarding things like sexual wellness and fertility preservation, emphasizing that advocating for yourself and being informed and empowered is so important when beginning a journey like this.
And every patient's different. At 22 I approached my new diagnosis like a journalist might. I wanted to read every study I could get my hands on. I wanted second and third opinions. I scoured the internet for information, and I really kind of lived by the notion that knowledge is power. This time around, given that it's my third time going through this, the internet is not a useful place for me. In fact, it's a scary place for me to go.
I've appointed a friend of mine who serves the role of advocate, who's doing that research, who's contacting doctors for second opinions. So, however it is that you want to manage it, whether you want to be the collector of the information, or you want to appoint someone in your family or your friend group to help you manage that, I think that pushing beyond the information that's immediately presented to you and making sure you have all the information you need to choose the appropriate treatment path for you and supportive services is essential.
Finally, what are you working on right now?
I am working on writing and on painting in the form of a third book that will have a hybrid of both of those things. I've really been spending time on a new creative love of mine, which is design. Of course, doing this advocacy work that I love so much, that gives me a sense of purpose within my own illness experience. Because if it happens to you, why not make it useful?
Transcript has been edited for clarity and conciseness.
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