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A woman whose husband was diagnosed with ocular melanoma at 28 years old opens up about her experiences navigating the cancer world and her search for a supportive community.
Being a parent to young children compounded the already difficult task of being a caregiver for a patient with ocular melanoma, explained Caitlyn Stewart, whose husband was diagnosed with the rare cancer in 2016.
Caitlyn and her husband, Phil Stewart, were busy caring for their young children, purchasing a house and building their careers as a special education teacher and software engineer, respectively. The high school sweethearts were 28 years old, living in Philadelphia and healthy; cancer was the last thing on their minds.
Everything changed when Phil noticed a blind spot in his eye while getting a root canal. He immediately checked himself into the emergency department at Wills Eye Hospital in Philadelphia. There, they met with Dr. Carol L. Shields, who informed the Stewarts that a mass had detached his retina and diagnosed Phil with ocular melanoma, a rare form of eye cancer.
Of note, ocular melanoma affects five per 1 million adults, according to the National Organization for Rare Disorders. Phil was diagnosed on a Monday. On that Thursday, he started brachytherapy treatment, which involves inserting radioactive plaque into the eye to deliver a high dose of radiation to the tumor.
Because Phil underwent treatment relatively quickly and many people lack education regarding ocular melanoma, Caitlyn said, many of the couple’s friends were quick to assume that the Stewarts would be able to move on from Phil’s cancer diagnosis.
Other friends failed to empathize with the fear of cancer recurrence the couple felt every three months when waiting for Phil’s scans to come back. “We were constantly waiting for that other shoe to drop ... and everyone else just wanted us to forget (about cancer),” Caitlyn said. As a result, the couple quickly started to feel like an “island,” Caitlyn explained, adding that during that period, “we felt very alone.”
Seeking Support from Ocular Melanoma Community
Wanting to rectify this situation, the Stewarts went to a retreat for patients with ocular melanoma that was organized by the Ocular Melanoma Foundation, a non-profit organization based in Washington, D.C.
While Phil appreciated being able to meet other people with similar symptoms, Caitlyn felt a disconnect. The other patients and caregivers at the retreat were older than they were. Of note, ocular melanoma has the highest rates of incidence in people in their 70s and 80s, according to the National Organization for Rare Disorders.
Hoping to find a connection with younger patients with cancer, Caitlyn accompanied Phil to Cancer Con, a convention organized by Stupid Cancer, an advocacy group for young adults and adolescents with cancer based in New York City.
Unfortunately, very few of the caregivers she met were spouses like herself, and the ones she did meet had grown children. “I still was on a different island of caregiving,” said Caitlyn, “where I still had very young and needy children, as well as dealing with cancer.”
Compounding the issue was Caitlyn’s struggles as the primary parent while Phil underwent cancer treatment. Caitlyn said that trying to take care of everything overwhelmed her. Her children were three and one years old when Phil was diagnosed and needed constant attention and care. “I tried to take the burdens of everyday activities, but, really, parenting should be a two-person (responsibility),” Caitlyn said.
Phil’s cancer diagnosis also bought back memories of Caitlyn’s father, who died 15 years ago after getting diagnosed with cutaneous melanoma. Remembering how her youngest brother was only 12 when her father died, she started worrying about how her children would similarly cope with potentially losing a parent at a young age.
Shortly after learning that Phil’s cancer had metastasized, Caitlyn learned that she was pregnant with the couple’s third child. Preparing for the baby, Caitlyn explained, provided a welcome relief from cancer discussions and opened her eyes to the reality that she could focus on other things in her life other than her husband’s cancer. She also learned to prioritize her own health and goals, like making regular date nights with Phil and seeking support from a mental health professional.
Caitlyn urged fellow cancer caregivers to follow suit by living in the moment and focusing on things other than cancer. Cancer doesn’t have to be emphasized every day, Cailyn advised, adding that trying to make every milestone perfect because it could be the last one is just setting up for disappointment.
Caitlyn further explained that the biggest thing that has helped her with her struggles with caregiving was leaning on people in her life for support. Having a “village of people (she) can trust and can voice (her) concerns with” has been crucial, she stressed, especially as childcare responsibilities and work obligations prevent her from being able to see a mental health professional regularly.
After the recommendation of a doctor, Caitlyn joined a caregiver support group on Facebook where she connected with other caregivers with young children. Hearing other peoples’ stories of caring for a spouse with ocular melanoma while parenting made Caitlyn feel less alone. Social media gave her valuable opportunities to network because, as she explained, “doctors can't give you contact information, but Facebook can.”
It also gave her a source of information when navigating ocular melanoma. From the group, Caitlyn learned about experimental procedures, clinical trials and tips on how to get insurance companies to cover treatment for ocular melanoma. This provided much-needed relief for Caitlyn. She had support with researching ocular melanoma treatments and allies when communicating with insurance companies.
Caitlyn urged caregivers to keep searching for a community until they find one that works for them just like she did. The most important thing she has done in her caregiver journey, Caitlyn explained, is aligning herself with people who have been in her shoes.
“If the ocular melanoma community is as supportive and as willing to share as it is,” Caitlyn stated, “I'm sure any cancer community would be the same. Anybody walking (this cancer journey) would want to make it easier for the next person walking (this cancer journey).
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