Suleika Jaouad is the author of “Between Two Kingdoms” and “The Book of Alchemy"; she was first diagnosed with leukemia at age 22.

Suleika Jaouad

CURE spoke with the patient advocate and author of “Between Two Kingdoms” and “The Book of Alchemy.”

Suleika Jaouad on Why Self-Advocacy Matters for Patients With Cancer

After receiving her first diagnosis of leukemia at age 22, author and patient advocate Suleika Jaouad is now facing cancer for the third time in 15 years.

Jaouad, the author of the New York Times column “Life, Interrupted” and the books “Between Two Kingdoms” and “The Book of Alchemy: A Creative Practice for an Inspired Life,” now works with 

, the organization formerly known as the Leukemia and Lymphoma Society.

 to share her advice for patients facing a diagnosis of cancer.

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. 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, and on your whole self.

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 Googling late 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 may seem like an aside to cancer, but, to me, are an important part 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.

Every patient is 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 lived by the notion of “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. So 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.

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 friend group to help you manage 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 and supportive services for yourself is essential.

Transcript has been edited for clarity and conciseness.

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CURE spoke with the author of “Between Two Kingdoms” and “The Book of Alchemy” about the latest chapter in her cancer journey.

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.

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.

Suleika Jaouad

Suleika Jaouad on Why Self-Advocacy Matters for Patients With Cancer

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

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