A Day In The Life of An AYA Nurse
By Kristen Stegenga, Oncology Nurse
Being a nurse who cares for adolescents and young adults (AYAs) is one of those things I think you are destined to do. You either really love it or you don’t. AYAs aren’t like everyone else, and you either recognize that and act accordingly, or you are in trouble! AYA are a refreshingly honest group and they don’t tolerate fools, nor should they.
I came to love taking care of AYAs via the pediatric side of the spectrum, so the AYAs were the “older” patients in my world. That is really important because I always have to remember to treat them as such. Nurses coming to this from the adult side have to treat them like adults but not “older” adults. (They are not the same as the grandparent types and they are already acutely sensitive to this as well!) I needed to treat my AYAs like the teens and young adults that they were and not the children that otherwise populated my patient list. For instance, NEVER use the word “tummy” with an AYA. It ends badly, even if it was just the slip of a tongue. AYAs do NOT HAVE tummies. I did that exactly once and boy, did I get schooled.
We all have hopes, dreams, hobbies, likes and dislikes — especially AYAs, who have their whole lives ahead of them. Getting to be their nurse means the honor of being privy to those hopes and dreams. It is important to me, first, that I find out these things, and then that I remember them. One of the most meaningful parts of my job is following up on how they are coming along on those hopes, dreams and hobbies. It might be the quest for that certain car they are saving for or seeing how the dog or cat that they got when transplant was over is settling in, or comparing recipes with one who loves to cook.
Cancer is really just a big interference in their lives, so I focus with them on those other things, even as I make sure to figure out if they like their flush slow, with a peppermint, with their arms raised or whatever.
It’s important to know how to make this whole cancer thing as painless as possible so they can get through it and get back to the things that matter to them.
I could tell a million stories with my patients that have shaped my life but I will tell a few that really impacted how I see what I do and what we do in the medical field. In a way, they all center on how AYAs feel that they are invincible. This is a unique characteristic of this age group that holds true whether they have cancer or not. There isn’t anything they can’t do and they are immortal, right up until the moment they are not. My own son, who is an AYA, is also invincible. He had a car accident, totaling his car in an unscheduled meeting with a semi on a dark highway. True to classic AYA form, in a short period of time he went from the recognition that he was lucky to be alive to the thought that he tangled with a semi and “won.”. I, for one, beg to differ on the definition of “won,” when his car was totaled, although I am ever so glad he is still here…
The same is often true with our AYA patients. I took care of an AYA who struggled and struggled through chemo with horrible side effects, one of the worst of which was terrible vincristine toxicity. It got to the point that she couldn’t walk normally despite physical therapy. She survived her cancer and the nasty side effects of the chemo, and I was so thankful because she had been so sick. A few months later, I ran into her at the zoo and she was smoking with her friends. I was stunned after all that she had been through. I couldn’t put two words together at the time but when I asked her about it in clinic next, she reported that she had already beaten cancer, soooo…
Another patient chose, just after turning 18, to have a radical surgery to save his life. It was highly likely to leave him with challenges of impotence and mobility. But he wanted to live. So he took the shot, willing to figure the rest of it out for that chance at a cure. During recovery, he indeed noted challenges with impotence and asked quite frankly what we could do to help him. Not a question we get in post-op patients very often in pediatrics! But, he was asking, so we found answers. Don’t be afraid to have the challenging conversations with AYAs. They are trusting you enough to ask, so follow up for them!
Another patient relapsed with stage IV cancer within two months of treatment and we were all devastated. She needed a transplant but we weren’t even sure how her body would tolerate more chemo. And she didn’t have a match for a related donor transplant. Then she developed a fungal infection and everyone was sure that there was no hope. But with the help of some compassionate use protocols and some new research that came at just the perfect time, she survived all of it and, despite all of the horrible things we threw at her to try to save her life, recently found out she is pregnant. Another thing we said couldn’t happen. I love being wrong! Invincible indeed!
Sometimes, despite all of the AYA invincibility and our best efforts, AYAs must face the end of their life.
Losing a patient is the worst thing.
I remember when one particular 4 year old and an 18 year old were dying at the same time. If you asked the 4 year old what she was going to be when she grew up, she would say, “Ariel!” (the Little Mermaid). The 18 year old, however, had been accepted to college; he had a scholarship, was going to study music and liked to cook. We shared recipes for our favorite foods (on inpatient stays when he wasn’t nauseated) and even discovered a couple of cookbooks in common where we weighed in on the best offerings. While both were very sad losses, his loss of life was heartbreaking for me because of the plans and dreams that were just within his reach.
As a nurse who cares for AYA patients, I always remember that they have dreams and hopes for the future and I need to engage wholeheartedly in those with them, no matter what the prognosis. Otherwise, my stage IV patient wouldn’t have had anything to hold on to, and now she is out there living life and expecting a baby! And I would have missed the awesome conversations about cooking and guitar and future plans that, while they didn’t all come true, still meant a lot. None of us actually has a crystal ball to predict who will live and who will not, so dream with everyone because dreaming is free and wonderful. And while while everything might not be possible, some things totally are.
Originally published at criticalmass.org on April 9, 2016.
