‘Just one slight sliver of life’: Cancer survivor shares novel with Stanford children’s hospital patients

In the rooms of Lucile Packard Children’s Hospital at Stanford University, stacks of bright pink books titled “Neon Jane” can be found among the usual medical supplies. There’s an especially large stack in Pamela Simon’s office, becoming thinner by the day. Many of her cancer patients leave with a copy tucked under their arm — a new friend to laugh and cry with. 

“It hits a chord for patients, because many of them want to just forget, just go on after cancer and move on, but it’s not that easy,” said Simon, a nurse practitioner at the hospital and the program coordinator for the Stanford Adolescent and Young Adult Cancer Program (SAYAC). “[Neon Jane] shows that their cancer experience becomes a part of them.”

“Neon Jane,” a semi-autobiographical novel published by Maia Evrigenis in 2022, depicts the author’s experiences living through cancer treatment and remission, a time in which cancer is no longer present in one’s system. The book is now being distributed for free to patients at Lucile Packard Children’s Hospital, the same hospital where Evrigenis was treated for leukemia as a child.

Evrigenis said the concept behind “Neon Jane” has been on her mind since her own cancer treatment began at age 13. During treatment, she noticed an absence of shows, books and movies that she could properly relate to due to the media’s sensationalized portrayals of medical conditions.

“I felt like a lot of the Hollywood cancer stories were about romance and these really big, dramatic medical scenes,” Evrigenis said. “It just didn’t really represent the adolescent and young adult cancer experience that I experienced.”

One of these experiences included living through remission, another journey that felt disorienting to Evrigenis, she said. After treatment, she found a support system in SAYAC, a group founded by Simon in 2015 that focuses on supporting and educating young adults and adolescents who are facing cancer. 

“That’s been a great way to connect with others about this really unique experience that cancer survivors have,” Evirgenis said. “Where you’re thrown back into the world, but you have all of these medical memories and some of them are traumatic, some of them beautiful.”

Evrigenis wrote her medical experiences into “Neon Jane,” which also helped her find a sense of community with others living through cancer after publication.

“The writing process was really lonely because I didn’t know that there were so many people who felt the way that I did,” she said. “I just was alone writing my book, being sad about my feelings. Now I realize that so many survivors feel exactly like I do.” 

Life after diagnosis

Anuj Nanavati, who was diagnosed with non-Hodgkin’s Lymphoma in 2015, first discovered “Neon Jane” while participating in SAYAC. Like Evrigenis, Nanavati was frustrated with cancer portrayals in the media and found the novel refreshingly easy to relate to. 

“When I read [Neon Jane] I was like, God, this is definitely much more realistic,” Nanavati said. “I think people have these misnomers about cancer and cancer treatment, and I think even [TV] shows gloss over it.”

Nanavati said typical media depictions of cancer fail to capture the complexities of maintaining an ordinary life during and after treatment.

“I always tell people that getting chemotherapy was the easy part of treatment,” he said. “[It’s] all the social dynamics, all the adjustments to your day-to-day life that you now have to be aware of.”

The book has also made an impact on physicians. Simon, who treated Evrigenis, said the book is a reminder to her and other health professionals that patients have lives outside of their conditions. It’s important to proactively ask questions about the next steps in life with patients, she said.

“When we take care of cancer patients, you learn what you need to do. You treat them to give them the chemo, but sometimes we don’t always see all the outside stuff,” Simon said. “The only way to do that is for us to know those issues and to be able to talk about them… I think Maia’s book talks a lot about some of those things.”

Finding power in storytelling

While the book’s genre, autofiction, allowed Evrigenis to convey her story with a combination of autobiographical and fictional elements, “Neon Jane” is still closely rooted in her own experiences. 

Evrigenis recalls feeling initial fear and embarrassment towards some particularly personal sections of the book — parts she never thought she’d be comfortable sharing. However, she said it was ultimately therapeutic to flip through the book and see her thoughts “so exposed on the page.” 

Nanavati also appreciated the “unfiltered” nature of Evrigenis’s writing, as it validated his own emotional experiences while living through treatment.

“There were some hard days where there were issues with… how you see yourself and how you lie to yourself or convince yourself that you’re doing okay, and you’re going to get through it,” he said.  

Evrigenis says that in writing and publishing “Neon Jane,” she doesn’t feel as if the pain or weight of being a cancer survivor has disappeared. Rather, through support and years of processing, she has accepted it as a part of her. She hopes the book can help others do the same. 

“I had so many reviews and people reach out to me and say that they really feel like their childhood has haunted them in some way… and that as they came out of adolescence, they had to really let that identity or those thoughts about themselves go,” Evrigenis said. 

The book has continued to be distributed to patients at Lucille Packard. Evrigenis said she hopes for the book and its message to travel into “as many hands as possible.”

“I just feel really excited and really proud that the book is now being read by people who are having the experience that I had,” she said. “I hope that it can inspire them and help them see that that experience is just one slight sliver of their life.”

The post ‘Just one slight sliver of life’: Cancer survivor shares novel with Stanford children’s hospital patients appeared first on The Stanford Daily.