A Letter to My Younger (and Better Rested) Self About Lessons Learned in the AYA Oncology Field
Dear 23-year-old baby social work student, Lauren –
OK, so I want to share a handful of the things I’ve learned over the years from my time spent with AYA cancer patients and their families. We’ve got a lot to cover, but before we jump in, we need to get a few things straight:
Your mom’s cancer story started with a diagnosis of Hodgkin’s lymphoma at the age of 21 and ended with a terminal cancer diagnosis 21 years later. But as with most stories, the good stuff all happened in the “in between.” You witnessed her strength, compassion, bossiness and magnetism, all in the context of her illness and your childhood. You saw the difference a group of compassionate and thoughtful medical providers could make in the face of that illness. You were drawn to hospitals and to these helpers, and knew you wanted to be one of those people. You saw your mom take charge of her own death in the same way she took charge of her life: with honesty, authenticity and impressive levels of organization and lists. You take everything you learned from her and from your family’s experience and choose to become an oncology social worker. Your Mom was the first AYA story that you experienced and the reason you were drawn to this work, but the reason you continue to do this work will expand to include the stories of hundreds of other young people. Their stories, each unique and personal, will weave together to give you your ever evolving and always renewing passion for this work.
P.S. to Lesson 1 – It’s not always super fun to talk about your work to those who don’t get it. You will learn not to hate the dreaded head tilt to the side-sad-eyes-frowny face that people make when you say you work with AYAs with cancer. It’s ok. They don’t know the secret that those of us who do this work know. That, at times, the work is gut wrenchingly sad, but we also laugh a lot. Like when you get a text from a patient that says, “Can you come talk to me ‘bout that sperm thing?” or when you address a patient’s questions about cancer treatment and marijuana use and they respond excitedly with, “You can get me weed?!?” or when your patient’s toddler is having a hangry induced meltdown in the infusion waiting room and you both laugh until you cry as you desperately shove those tiny apple juices and graham crackers the hospital has on hand into said toddler’s mouth. It’s these windows into the humanity, into the larger lives and stories of our patients that make the work worth it. And the thing about AYAs is that if you’re willing to take a peek, they’re so willing to share their stories with you.
There is power duality – and this is, perhaps, the AYA superpower. The first patient you meet on the first day of your first-year internship is a young man named James. Diagnosed with a nasty sarcoma and given a very poor prognosis, you sit for hours at the end of his hospital bed. It is here that you discover that cursing and talking about college basketball are really excellent rapport builders. You talk to James about his fear of dying and sit with him as he grieves a life that he will not get to live. You tell the medical team you’ve had these conversations about what is important to James at the end of his life. And they call you back the next day and say, “He doesn’t understand how bad this is – he’s talking about graduating from college, getting married, having kids.” You go back to see James to be sure he understands what is ahead of him, and he says (see previous comment about cursing), “Lauren, I’m not a dumbass – I know I’m going to die. But I can hope I’m going to live and give myself a chance to dream.” This, my friend, is what the kids these days call a “mic drop.”
You see this duality at play every day. Acceptance of death and hope for the future. Humor around the absurdity of sperm collection and dismay about the loss of the ability to have the family you imagined. Joy of finishing treatment and sorrow in knowing that you’ve survived your illness, but the “you” that survived is different than the “you” from before. AYAs repeatedly teach you that seemingly contrasting emotions often arrive together and that the key to a life fully lived is to hold and experience them all.
A young woman named Sophie Steiner will change your life in ways you will never be able to comprehend – and you will never meet her. Sophie is fourteen when she is diagnosed with cancer and treated at UNC. She dies several months after her diagnosis but leaves her family with this charge: do better for teenagers and young adults. Her parents, Niklaus and Lucy and sisters, Annabel and Elsa, start the Be Loud! Sophie Foundation to honor Sophie’s wish. You are the first employee hired with funds from Be Loud! and are entrusted with the mission to amplify Sophie’s voice and the voices of so many other patients. It is your duty to exponentially expand the impact of these voices – to do more and do better for AYAs. But, SPOILER ALERT, you do not do this on your own. You are surrounded by the most remarkable people. You will come to see that this is the true magic, in fact, the gift, of Sophie. And she gives you so much.
She gives you the Be Loud! Sophie community. A community that comes together each August to joyfully rock out at a fundraising concert because when asked why they don’t do a fun run, her parents say, “Sophie hated running, but loved music and bringing people together!” A community that inspires a group of boy scouts to ride their bikes across the country each summer to spread awareness about AYA cancer and raise money for your program. This community only does things authentically. This community is the beating heart of your program.
She gives you a work family and home, full of collaborative, loving, brilliant, dedicated researchers, clinicians, staff, administrators, patients and families. And an absolute dream team of AYA dedicated providers. These folks will challenge you, support you, cry and laugh with you, make fun of you (when you deserve it). UNC is the place where you get excited to go every day because these people are worth putting real pants on for! You will learn, time and time again, that taking care of AYAs living with cancer is a team sport, and you got drafted onto a stellar team.
She gives you the chance to create the most loving relationships with her family. Relationships built on a foundation of mutual respect and purpose. Your kids will play in her childhood backyard treehouse. You will hold her family in such a gentle and distinct place in your heart, recognizing all that they have lost and all that their loss has given you and the world.
She gives you an almost daily reminder of the power of one LOUD voice. And because of this, you will always remember to center young people’s experiences and stories in your program’s growth, in research, in your “why.” In this way, Sophie is you and your program’s talisman.
You will learn so very many lessons over the next fifteen years, my young and less-tired self. These few are just the tip of the iceberg. You will change jobs, become a southerner, watch many Duke games at Cameron Indoor Stadium, bring two rad little girls into the world, have more to do over the course of one normal day than you will ever imagine possible. You will wish for more sleep and for some extra hours in each of those days. But you will never question how inextricably linked your personal and professional life have become or how worth it “it” all is. At the end of those very long days, you will remember the gifts that are these lessons and pinch yourself when you realize you get to learn even more tomorrow.
I would wish you luck on your journey, but when you’re surrounded by the kind of people you will have in your life, you won’t need it.
So, I will leave you with some parting words from Sophie:
and move with grace.
Explode with Light.
Have no Fear.
With gratitude to every patient you’ve met and will meet along the way,