The First Day

 

In 2010, at the age of 22, Suleika Jaouad was diagnosed with acute myeloid leukemia. The five-year survival rate for adults with this cancer was 33%.

She realized there was a problem when that the itching on her legs wouldn’t go away. This got worse, then she was exhausted all day. It took a year of going to different doctors before she found a doctor who knew what was going on. 

In her book, Between Two Kingdoms, Suleika describes how draining it was to deal with cancer and fear of dying every day for four years as she went through multiple rounds of chemo, radiation therapy, and a bone marrow transplant before she was declared to be cancer-free. Feeling good enough to travel, she went on a three-month road trip to meet some of the people who wrote to her with support or asked questions from their own situations of grief or confinement.

Like all cancer patients, she had to listen to friends tell her to live each day as if it were her last. This put pressure on her to maximize her time every day and stuff in everything she could, rather than enjoy what she felt like doing. She wanted to be open to what each day brought. In an interview with Kate Bowler, Suleika said “I’ve had to adopt 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 curiosity and wonder.” 

Early in her treatments, when chemotherapy sores in her mouth made it too painful to talk, she began a cancer journal as a creative outlet and an act of survival. She started a blog in 2012 that became a column in The New York Times, started painting, and currently has a Substack account called “The Isolation Journals.” She quotes Jeanette Winterson to defend why she spent so much time writing about her illness: “It isn’t a hiding place. It is a finding place.” Keeping a daily journal helped her process what was going on medically and stay in touch with what her emotions were doing.

One of the strengths of her book is that she does not shy away from describing the intense, physical trauma of the treatments and her range of emotions — despair, the struggle to hang on to hope when she encountered a setback, like when she was getting ready to leave the hospital and was told that her doctors had added on another round of chemo, and she had to unpack. She writes of how hard it was to live in isolation for months as she waited to see if her bone marrow transplant took root. The companionship she found in sharing with other cancer patients was crucial to keeping her spirits up. She is honest, including about the times when she was not nice to people who were trying to take care of her because she was worn out and the week had been incredibly hard.

After her cancer went into remission, she continued to write and talk about it, encouraging people to choose to live. In 2021, her leukemia returned. Treatments put it to sleep again. In 2024, the cancer returned for a third time and she realized that it was unlikely she would ever be cured and would need periodic treatments for the rest of her life. She is learning to live with her new reality.

Suleika makes astute observations throughout: “you learn to live on the fault lines,” “how porous the border is between the sick and the well.” When sitting in the waiting room with nothing to do but watch people, she notices different stages of patienthood. When you start out you have an entourage of people with you. After six months, one other person comes with you. After that, it’s just yourself. “As a patient, you are constantly asked to investigate the body, to report on yourself, and to narrate your findings.” Doctors and nurses often asked her, “How are you feeling?” What they wanted to know, most of the time, was how her body was feeling, not how she was doing emotionally.

During her first night in the bone marrow transplant unit, she said that “fear was alive. I could smell its wet fur in the room.” She wrote a haunting plea on her hospital wall, “Let me live.”

Among the cancer people she got to know during treatments, the story of her chemo partner Melissa Carroll stays with me. Suleika describes her as a creative, badass, life-filled person in her 30s who was a painter starting out in her career. They met after Melissa had a relapse of her Ewing sarcoma, an aggressive bone cancer. When the cancer spread to her lungs, she knew she was going to die so she went off to India because she always wanted to go, and there she taught kids to paint. Melissa didn’t know she had cancer until doctors did an X-ray on her foot after an injury and discovered that she had cancer, it was already Stage 4, and it had already spread to her lymph nodes and knee.

Survival, Suleika says, is a creative act. We have to find a way to be creative with what we’re going through if we’re going to survive. She encourages people with cancer to be playful and use our imaginations to guide us through each day.