“You need to do something about this.”
My sister said to me in the midst of her cervical cancer chaos. This is when I learned that whole buildings on hospital campuses were devoted to caring for people with a cancer diagnosis. Frankly, I was a cancer muggle. My transition from cancer muggle to cancer caregiver was an abrupt unplanned crash course. Let me acknowledge that everything with cancer is abrupt and unplanned.
I had no idea the number of people who are delivered the “C Word” each year, much less that 90,000 of them in the United States are young at 15-39 years of age, also known as Adolescents and Young Adults (AYA). Cancer is a ridiculous diagnosis that is arduous, complicated, frustrating, scary, and difficult to understand on so many levels. I discovered that beyond the cancer itself, a lot of crap comes with it which is also abrupt, distressing, and life-changing. It changed my life.
“If you need any help, let me know.”
I said this to my neighbor, a cancer quality improvement consultant, who was musing about the myriad of challenges cancer puts forth. She had a dog with a disability who captured my heart. Connective magic is just one of the million reasons I love dogs. I had met a dog and its human who exposed me to the world of cancer quality improvement. I was secretly in love with both.
At the time I was working in department store design. I determined the best look and location for intimate apparel departments; my soul was dying. My neighbor’s oncology work inspired me. I admired her. I wanted to be a part of something that mattered. Soon after, my neighbor asked for my help, and I began my oncology career transcribing interviews ranging from oncology clinicians to health insurance payors. I must have Googled a thousand words a day. I was lost yet felt a sense of belonging.
I wanted to know more, and I felt a pressing need to do more. I knew I was exactly where I was supposed to be. My project management experience in retail architecture was transferable; I was able to see problems and build plans. I could work with others who were experienced cancer experts. Together we could improve outcomes and the quality-of-life experience for young people.
“What are the unmet needs of those diagnosed with cancer?”
We asked this question of clinicians and allied health care professionals from ten Chicago treatment sites and five community cancer support centers at the kickoff of an unprecedented supportive oncology collaborative funded by the Coleman Foundation. There were no data or metrics in the room—just humans. We wanted to hear their experiences, the process of the care they practiced, the challenges they encountered, and what their patients experience.
This was a quality improvement project, not research, designed to encourage the collaborators to think outside the box and work together to create possibilities. The project induced a rapid cycle effort to explore, develop, implement, and improve upon supportive care protocols. This is where I learned about the almost unimaginable creative power of unoppressed collaboration between well-experienced individuals devoted to a common goal.
We started with adult oncology, then on to pediatric. Both collaboratives expressed the need for the same effort to be executed for AYAs. I was thrilled when the Coleman Foundation funded a third collaborative for AYAs and elated when I was asked to lead the project. I was working on a graduate degree in health communication at Northwestern University at this time. I focused all my research, writing, and absorption of literature on AYAs. I became obsessed with AYA’s loss to follow up in survivorship, wrote a paper on it, and received my first F. I had dared to write a paper about my well-informed opinions.
That F was a hard pill to swallow. That F drove me deeper into the AYA cancer space. I knew I was onto something different, something that might improve AYA’s loss to follow up. What I wrote was an opinion piece. Maybe academia wasn’t interested in my opinion (then), but I knew there was a place for content and interventions based on pragmaticism, research, and the lived experiences of both patients and providers.
The Chicago AYA collaborative kicked off in person on January 23, 2020. We expanded upon the collaborative members including clinicians, administrators, allied health, national patient advocacies, AYAs, and caregivers in the room. We asked the question.
“What are the unmet needs of AYAs diagnosed with cancer?”
The usual suspects showed, but new ones piqued my interest: benefits and harms of supplements and herbs, where does cannabis fit in, and post-primary treatment PTSD. As I listened, I heard people saying that patient and provider resources addressing these, and other critical unmet needs, were not readily available, nor specifically created for AYAs and the clinicians who care for them. Together we could develop those.
Then came COVID. Essentially, the pandemic drop-kicked medicine into the 21st century. Telehealth was the new normal and we were allowed to create content and resources that didn’t have to accommodate an 8.5 by 11-inch sheet of paper. For the AYA population, content/tools/resources could be designed to be consumed from the smartphone at the end of their arm. Provider education was transformed into screen-ready platforms; national experts were available and affordable in the summer of 2020. And social media blossomed both as a place to collaborate and connect in quarantine.
I know people suffered, and I feel guilty when I admit my privilege. But the truth is, I was able to capitalize on these “COVID side-effect opportunities”.
I expanded my network to include AYA stakeholders: clinicians, social workers, allied health professionals, content creators in the social media cancer space, researchers, non-profits, AYA artists, patient advocates, family members, and young people diagnosed with #&^$%! cancer.
My eagerness was well-matched by the quarantine online explosion. I wanted to hear more about what AYAs experienced and what was happening in both the research and care realms. I forced my boomer brain to master multiple social media platforms. I read many relevant researcher and clinician posts along with a plethora of AYA experiences on points during the “JoUrNEy” that need improvement. I registered for every conference, symposium, patient support and/or hangout offered that I could attend from my computer. I listened, learned, and thought through the processes of oncology care for young people within our health “system”. I witnessed amazing discoveries and disconnections within the triad of research, clinical care, and patient experience. I learned early in the Coleman Foundation collaboratives that all members of this triad must be included to make lasting quality improvements that significantly upgrade the experience of all involved.
So that’s how I arrived here, standing in awe at the intersection of AYA cancer research, treatment, and the patients themselves. This collaboration between these-experienced individuals devoted to a common goal…can create change.
Some people say people like me are a bridge, but that would mean I am a connecter between two points that if no longer present, the connection is lost. I am not a bridge. I am a path maker. I want to forge permanent, familiar beaten paths between all members of the triad.
Frankly, I want to cause collaborative miracles.
I promise I am and will always be a force to be reckoned with when it comes to AYAs.
I start work every day with an inspiring paper post-it note stuck to my computer:
You better do something about this.
This article was featured at our August 2022 Perkatory. Click here to learn more about Perkatory and sign up for an upcoming Perkatory!
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