Aerospace Engineering Alum Develops Website for Young Adults with Cancer
“I was an engineer for over a decade and had defined my life by being an overachiever and an athletic person,” Casperson recalled. “But all of a sudden I didn’t have any of these outward cues because I took a summer off to finish my treatments and I couldn’t do any of the things that I had previously used to define my whole world. The challenge of learning how to redefine myself with different expectations was a painful process.”
Casperson underwent four months of chemo, completed that master’s degree and enrolled as a PhD student in the same program. Even with her husband, Brett Jones, a fellow engineering student, by her side, she faced some unique challenges beyond her medical needs as a young cancer patient.
“When I was going through all of this, my husband and I realized there was a lack of resources on how to fit all of this new stuff into your day-to-day life,” Casperson said. “I was a marathon runner and a graduate student. I was used to being very busy and active. During treatments, I could do neither of those. There was a whole process of how to establish what a day-to-day resemblance of a routine might be.”
Now three years later and motivated by the need to provide resources and a sense of community to those finding themselves in similar situations, Casperson has launched a website, Lacuna Loft, to help young adults cope with all the “extra stuff” they are faced with as cancer patients, survivors, or caregivers.
Casperson chose the name because “lacuna” means hiatus and “loft” is an adaptable place of respite converted from another use.
“I wanted Lacuna Loft to be a place where one could come, learn how to take a break and exist in this stressful life, then either be able to move on or grow here,” Casperson said.
Casperson notes that young adults are dealing with such events such as new careers, competitive graduate programs, new relationships or new families, challenges different from most who suddenly find themselves faced with overcoming cancer.
As a graduate student, Casperson studied structural mechanics, focusing on such topics as fatigue of materials at high temperatures and later computer simulation, intense subjects from one of the most respected programs in the world. She completed research with the Air Force Research Lab as well as with NASA’s Marshall Space Flight Center.
“This is a very competitive environment and one that doesn’t always lend itself to an awesome work-life balance,” Casperson said. “That (work-life balance) was something I needed in facing all of these crises. Going through treatment was very isolating because my peers had never dealt with anything like this. They didn’t know what to say or how to help out.”
Fortunately for Casperson, she wasn’t all study. She enjoyed the wide range of culture of Champaign-Urbana, which she calls, “a big city trapped in a little city’s body.” She joined many fellow engineering students in a salsa class, where she met her future husband.
A budding entrepreneur, Jones has been at Illinois for a decade and is completing his PhD in computer science this summer. His expertise has been instrumental in helping get Lacuna Loft off the ground. Initially he helped convert the couple’s wedding website to a blog, where his wife could share their experiences.
“I found that I was skilled at blogging,” Casperson said. “I learned what it meant to build a brand, and Lacuna Loft sprang out of these newly found capabilities.”
Lacuna Loft has a number of contributors with a variety of experiences, some are long-term fighters, some are survivors, and one has a child with cancer. It covers a range of topics such as what to cook while having a queasy stomach, what to do for exercise, styling through chemo, whether it be hair loss or a changing body, and what products and essentials are helpful when starting chemotherapy treatments. It offers care baskets for chemo patients, provides links to outside resources such as how to deal with infertility, and builds a network for those looking for mentors going through cancer as a young adult.
“The main thing that I hope Lacuna Loft is doing is communicating that while there are challenges and difficulties ahead, there are ways to navigate all of that,” Casperson said. “I want Lacuna Loft to be this resource to help people feel less isolated and provide tools to deal with the day-to-day. Right now it’s a very female-voiced site, but I’m working on getting some guys in the mix.”
Although Casperson is new to brand-building and creating a business, she credits her Illinois engineering experience for “teaching her to be teachable.” She is seeking sponsorships and endorsements (Carle Hospital has indicated they will link to Lacuna Loft on their resources page). She had a booth at the Working Women’s Expo to test her pitch, noting that the word cancer especially startles people of this age group. Although her focus has been primarily on the Champaign-Urbana area and the state of Illinois, she hopes Lacuna Loft eventually becomes an international brand.
“There are a handful of very active voices in the young adult cancer community, but they are on the medical and advocacy side,” Casperson said. “Lacuna Loft has had an overwhelming cry from people visiting the site who have said ‘I don’t where you’ve been all my life.’ I’d like Lacuna Loft to be at the forefront of the day-to-day needs of this age group, because the issues are not just about what clinical trial to use or what chemo I should have. Navigating through hesitant peers and workplace environments, fears of financial difficulties and infertility, as well as learning to adapt and thrive in a slower pace of life are significant hurdles to overcome when facing cancer as a young adult.
Not surprisingly for someone her age, Casperson is finding many of her contributors through social media.
“I’ve found that people really like sharing their story, whether it’s how to chat with their new boyfriend or how to present themselves in public now they that they are totally bald and their face is puffy,” Casperson said. “Peers and work environment are huge because they constitute so much of a person’s daily experience. Your peers are sometimes uncomfortable with hospitals. When one’s not feeling well at home, it takes a special kind of friend to be invited into that situation. These connections are very crucial to keeping it together as a young adult who has so many other worries anyway.”
“If Lacuna Loft was here when I was going through treatments, it would have made my life a whole lot easier,” she concludes. “My hope is that if someone is in the same situation, through Lacuna Loft they have an easier time in making the transition into and hopefully make the transition out of this crisis as a young adult cancer survivor.”