Ximena Giesemann, 31, Melenoma

I officially became a part of the AYA community in August of 2016 when I received my own cancer diagnosis: melanoma. I was 22 years old at the time and days away from embarking on my first semester as a graduate student in Positive Developmental Psychology at Claremont Graduate University. Upon hearing the news of the diagnosis, I packed up my just-moved-in apartment, deferred my grad school admission, and planned for the journey back home where I would receive treatment. Cancer really does have a way of throwing a wrench into things.

Back home, I went to appointments, had surgery, watched a lot of TV, learned what it felt like to wait for biopsy results, and avoided looking up anything cancer-related on Google like the plague. My parents, who had quickly assumed the role of “cancer caregiver” accompanied and supported me throughout. I did my best to adjust to my “new normal”, although it felt anything but. By the time the next school year rolled around, I was well enough to attend and had newfound research interests. While also in an unquestionable attempt to grapple with what had happened to me, I decided to specialize in AYA cancer patient and survivor well-being to help improve the lives of other young people like me.

I became deeply entrenched in the AYA cancer world. I got better acquainted with AYA research and wrote my master’s thesis on the experiences of AYA cancer survivors. I also took on the program coordinator position at a nonprofit that puts on outdoor camps for AYAs and became friends with other young people who had cancer. I developed a profound love and reverence for the AYA community. Additionally, I noticed how comparatively little research and programming was centered around the experiences of caregivers of AYA cancer patients and survivors, an integral part of the community. 

Informal caregivers (caregivers who are unpaid and oftentimes family members or friends) walk alongside the AYA patient throughout the cancer experience. They also go to appointments, provide care after treatments, and learn what it feels like to wait for biopsy results. They, too, are impacted by the cancer diagnosis and often suffer silently. 

More research that leads to a deeper understanding of the experiences of caregivers of AYA cancer patients is critical in order to learn how to better meet their needs and improve their well-being. Thus, Dr. Saida Heshmati and I are conducting a research project that is aimed at better understanding the day-to-day experiences and well-being of caregivers of AYA cancer patients. Findings from this project can help to inform interventions that are made to foster caregiver well-being. Outcomes will be shared with Stupid Cancer, helping the broader AYA community gain more insight into this important issue.