In Defense of Messy Emotions

I look out at a hundred faces of AYA patients, survivors, and their loved ones quietly sipping their coffee, tea, and water. Everyone here has taken time out of their Saturday to hear a panel of people like me explain how we’ve “made meaning” out of having cancer as a young adult. A caregiver in the front row poises a pencil above her notebook, ready to record nuggets of my hard-earned wisdom. It’s basically TEDx for people with truly horrible luck.

Sitting onstage with a lavalier mic clipped to my dress, I have no idea what to say. I feel as though I’m 500 feet above, watching myself becoming a poster child for “young adults with cancer”—an identity that feels completely incongruous with the one I’ve spent my whole life creating. Daughter, sister, friend, book editor, athlete, beach reader, pub trivia ace, karaoke singer, and period film lover—these are the labels I choose to name myself with. Cancer doesn’t quite fit the story I have spent twenty-nine years writing.

The phrase “impostor syndrome” is most often applied when we find ourselves in a professional situation we feel we don’t deserve. So, as if applying for a job, let me lay out my credentials. I was diagnosed with a pancreatic neuroendocrine tumor during the week of my twenty-sixth birthday. After having surgery to remove the tumor as well as my pancreatic tail and spleen, oncologists discovered that the cancer had spread to local lymph nodes. I have regular scans and oncology appointments to monitor for signs of recurrence. By any and all definitions, I am a cancer survivor. So why don’t I feel like I can claim it?

When I tell people I had cancer, I always rush to add, “But I didn’t have chemo”—almost as if I’m waiting for someone to kick me out of the club. A “real” cancer patient loses their hair. They are “warriors” who are unfailingly resilient, brave, and grateful. They don’t feel guilt, or anger, or impostor syndrome. These messy emotions don’t fit into the cultural story written about young adults with cancer.

Despite the strange cognitive dissonance stirring in me, I take a deep breath and just attempt to be honest with the people in that hotel conference room. I share that I couldn’t feel more like a capital-F “Fraud.” I tell them how I craved some lightning bolt, a this-is-what-it-all-means moment, to give purpose to my cancer; how I was angry when that moment never arrived. Cancer forced me to face the parts of myself that I always avoided acknowledging, and I complain about how that process was hard and messy—not perfectly packaged for public consumption or pithy takeaways.

Instead of kicking me out for not fitting neatly into the story told about young cancer patients, the AYA community responded by sharing how they don’t fit the mold of the “perfect” cancer patient either; how, with every well-intentioned “You’re so brave” they hear, it only serves to highlight how scared they are; how they’ve lashed out at friends who could no longer relate to them; and how it’s hard to feel grateful when you have to cancel a family trip so you can afford your upcoming scans.

When diagnosed with cancer as an AYA, certain emotions may feel “appropriate,” “normal,” or “expected.” While the diagnosis may be shocking, no one would be shocked to hear that cancer elicits feelings of fear, sadness, and overwhelm. But what about the emotions you didn’t expect? The messy, contradictory emotions that don’t quite fit the mold of what a patient “should” feel? These emotions may surprise or even scare you. They can make us feel like our experience isn’t valid.

As a book editor, my job is to help authors give language and structure to complex ideas. Putting the intangible into words gives others the chance to connect, to see part of themselves in what is written, and ultimately to be helped or transformed. This is why I turn to books. But when my search for a comprehensive resource confronting the messiness of being a young adult cancer patient came up empty, I was struck by the need to help bring that book into the world. The result is Coping with Cancer in Early Adulthood.

I first connected with Dr. Cristina Pozo-Kaderman at one of these very conferences at which I was speaking. Listening to her describe the unique psychosocial needs of young adults with cancer, I knew immediately that I wanted her to author this book. As a senior psychologist with more than thirty years of experience working with AYA cancer patients, Dr. Pozo-Kaderman had the expertise to write this book; that was clear. However, it was her natural warmth and her compassion for each patient’s individual experience that shone through. Together with coauthor Saul Wisnia, who has spent more than twenty-five years helping to tell cancer patients’ stories, our goal was to create a book that blended clinical expertise with the lived experiences of real-life AYAs.

Coping with Cancer in Early Adulthood addresses the confusing and often overlooked aspects of navigating cancer diagnosis, treatment, and survivorship between the ages of eighteen and forty-nine. Tackling difficult topics like isolation, loss of independence, financial toxicity, treatment side effects, sexual health changes, “scanxiety,” and living with chronic cancer, each chapter combines Dr. Pozo-Kaderman’s expert guidance with stories from patients who have been there before.

For me, the most fulfilling part of working on this book has been ensuring that the voices of actual early adult patients are represented in every chapter. You’ll read real patients’ reflections on finding the right treatment teams, dealing with toxic positivity, and feeling out of place in both pediatric and adult waiting rooms. Other patients offer advice for talking to young children about cancer and how to practice self-care and mindfulness. Some patient voices offer validation for unexpected emotions and changes in confidence and identity. Each of these patients was brave enough to give language to the messiness we’d sometimes rather not share.

Even as I’m sitting down to write to you, I feel the impostor syndrome creeping in. It stands over my shoulder, taps on the windowpane of my mind, and whispers, “What do you possibly have to share?” However, as I’ve learned from the AYAs who have written their experiences in this book, none of us has the answers. We’re not supposed to, because this was never “supposed” to happen to us. I hope, with its clinical expertise, Coping with Cancer in Early Adulthood can offer you some helpful medical guidance. But, even more so, I hope this book gives you the confidence to name the contradictory, unseemly, scary feelings you’d rather keep buried. Because validating your own messy emotions is a necessary step in beginning to move past them.

To purchase the book, “Coping with Cancer in Early Adulthood”, click here.
*All proceeds go to Dana Farber Cancer Institute, the Young Adult Program (YAP)