With no peer support, nor any guidance on how to navigate this part of the disease, Casperson started a blog. Through this, she connected with other survivors.
Mallory Casperson’s world had already been rocked when her mother, for whom she served as the primary caregiver, died from a brain tumor. While grieving her loss, Casperson was also finishing up her Master’s degree. Two months later, she was diagnosed with Hodgkin lymphoma.
Casperson was 24 years old and living in central Illinois when she found a clinical trial at a National Cancer Institute-designated cancer center in St. Louis, which meant traveling three hours each way for treatment.
“There wasn’t any type of support for survivorship, kind of the psychosocial and emotional side of dealing with a cancer diagnosis, in my town,” Casperson said in an interview with CURE. “There also wasn’t anything offered to the young adult age group at my cancer center.”
With no peer support, nor any guidance on how to navigate this part of the disease, Casperson started a blog. Through this, she connected with other survivors. They, too, felt fatigued and had questions about fertility and relationships after cancer.
“It was so validating and enlightening,” she said. “Like all of a sudden, I didn’t feel quite as crazy for needing all of the boundaries and self-care mechanisms that I had never needed before.”
Lacuna Loft, a nonprofit organization founded by Casperson in 2014, was born from these conversations.
“People felt isolated and that was affecting their quality of life,” she said. “They wanted those connections with people who have been through cancer. In many ways, it didn’t matter what diagnosis people were coming from or how they were treated.”
The word Lacuna means a hiatus and loft is a cool place to hang out, explained Casperson when asked about the meaning behind her organization’s name. Young adults, aged 18 to 45, can become a part of this online community no matter where they live in the world.
Lacuna Loft offers a dozen free programs, some of them 24/7, that vary from creative writing to drawing to book clubs. There’s even an “Awkward Auntie” program where survivors can ask sexuality counselor Anne Katz, RN, Ph.D., any question that they may have about sexual health in survivorship. Some of these programs exist via a video chat platform — such as the Young Adult Cancer Hangout, which are informal meetups with a guide who serves as a mediator, if needed.
“Regardless of where someone is, where they are in their treatment, whether they have a small kid at home or even if they don’t feel well enough to leave the house, we can still offer them these programs and get them face-to-face with other survivors who understand what’s happening,” Casperson said.
Lacuna Loft is funded through donations, grants and foundation support. The money then goes to help pay for services for survivors. For instance, a $25 donation provides one young adult with a book for the organization’s book club and $100 provides 1,000 brochures to health care providers working with young adult patients.
“We are opening up the world of cancer support and making it as accessible as possible to this community that is otherwise not getting these programs,” Casperson said. “It’s hard going to a program and being next to someone who is 80 when you’re 25 and you’re pissed that you and your boyfriend, because neither of you have been through this before, don’t know how to talk with one another.”
Casperson has many ideas on the horizon to expand Lacuna Loft, including finding a way to help hospitals run programs like theirs so that similar services can be brought to the young adults being treated at those places.
“You are not alone,” she said. “It’s not the best club to be a part of, but it’s a weird club nonetheless. There are people who have felt the concerns and worries, and who are there to help support you.”