When she founded BRICKS for Young Adults (Building Resources In Cancer Knowledge & Services) last spring, Charissa Hamilton-Gribenas wasn’t sure if it was the right decision. She scolded herself for associating with a group of sick people, many of whom might die, just months after her husband was taken by the disease. She wondered if creating BRICKS was self-destructive, or worse, a misguided attempt to cope with her loss.
Then she shared her publication, the “BRICKS for Young Adults: Cancer Awareness & Resource Guide” with a support group in Pittsburgh, Pa. Ever since, BRICKS has made nothing but sense.
“Every single person in the group looked at me and said thank you,” Hamilton-Gribenas, 34, tells Tonic. They wished aloud that they had been given such a digestible and honest resource when first diagnosed with the disease.
That is the problem with cancer, one of them at least, and perhaps one of the most curable. Candid and productive information about the disease is impossible to find and yet everywhere at once. Google “young adult cancer” and you won’t know where to begin. Half the results are websites seemingly written by machine, while the others just don’t apply, especially if you fall into the ambiguous and neglected “young adult” demographic.
BRICKS is better than information. BRICKS is wisdom gained while a woman waged war against her husband’s Hodgkin’s Lymphoma. It’s the knowledge she gleaned while going up against an overwhelming foe, watching her husband flush the blood from the port tucked under his skin, navigating the hospital network of Western Pennsylvania and doing so without the aid of health insurance. That wisdom was too valuable to forget.
“I felt like we had done so much work and had to do something with it,” Hamilton-Gribenas says of her and her husband’s fight. The booklet, which was published in part thanks to a Seed Award given by Pittsburgh’s Sprout Fund, is BRICKS’ unassuming but startling entrance onto the stage of cancer awareness.
Comprised of 15 personal stories, a list of proven resources for young adults facing the disease and a selection of her late husband’s colorful art, the booklet resembles a “zine” — the same kind of handmade music mag the editor read years ago as a punk rock fan. “I feel that any giant cancer organization can get a celebrity and have a huge fundraiser and make millions of dollars and have commercials on television, but they’re not really affecting people on that one-to-one basis that’s really necessary. “I definitely come from a punk rock, D.I.Y., grassroots background, and it’s proving to be very effective,” Hamilton-Gribenas says.
The handsome, back-pocket sized guide draws readers in, but it’s the stories that keep you there. “The Assless” tells how a young man customized his bicycle to let him ride to and from hospital visits without risking the spread of the disease. “Cancer Free, Ohio OR Second String Friends” tells of a young woman suffering from an “old man cancer,” renal cancer. “A Chemo Story” tells of 20-year-old Luke Ferdinand’s fight against not only non-Hodgkin’s B-cell lymphoma, but also the rigid institution of cancer treatment: ”As I was not yet 21, I was admitted as a pediatric patient, given a pediatric chemo course on the children’s floor of the hospital and generally treated like, well, a child.” Ferdinand remembers watching the series finale of Seinfeld at the Ronald McDonald House while everyone around him “seemed younger, sicker.”
The storytellers in Hamilton-Gribenas’ booklet are misfits. They are too old for the pediatric ward but too young for general oncology. They belong to a demographic that cancer experts can’t even define. Some organizations, like “CA: A Journal for Clinicians,” say “young adults” are teenagers and twenty-somethings. Others, such as the National Cancer Institute include thirty-somethings among the demographic. As seen in Ferdinand’s story, the definition can have a very real impact on the course of a patient’s treatment. It could even mean the difference between life and death.
According to a CA study, young adult cancers, more so than others, “appear to be spontaneous and unrelated to either carcinogens in the environment or family cancer syndromes.” In other words, young adult cancers strike swiftly and unexpectedly. They also strike frequently. According to the same study, 1 in 168 young adults will develop an “invasive” cancer. And that’s not including thirty-somethings. According to the National Cancer Institute, 70,000 young adults are diagnosed with some type of cancer every year, and every year thousands more go undiagnosed because they’re uninsured, poorly cared for by medical professionals, or avoid signs of sickness because of deep-seeded notions of “invincibility.” Over-confidence is more than a stereotype of this classically self-destructive demographic, and it might be the most easily eliminated of cancer’s many risk factors.
Hamilton-Gribenas is doing her part. Unlike many who speak out on cancer, the mind behind BRICKS isn’t afraid to talk about death. “The truth is 1 in 7 young adults diagnosed with cancer die from their disease,” she says. Still, “a lot of resource materials out there,” much of the literature she and Rick sifted through during his fight, “has this sort of ‘go survivor, you can beat it!’ mentality. There’s a whole reality of living with cancer that people don’t really talk about.”
“No one ever wanted to say death was a possibility.”
Now she knows so herself and she’s telling others. She put her and Rick’s story within the pages of the “BRICKS for Young Adults: Cancer Awareness & Resource Guide.” She also included his art, his story told through his own hand and the stories of several other patients, survivors, partners, parents and friends.
“Shortly before the booklets were printed, one of the young women who wrote for the booklet passed away. It was pretty devastating to me,” Hamilton-Gribenas says. “But I felt so glad that she told her story.”
Young adults everywhere will be glad Hamilton-Gribenas is telling hers.
Photos via BRICKS for Young Adults.