Nicole Houlihan is a GI cancer nurse navigator at Advocate Christ Medical Center. At the age of 27, she was diagnosed with a type of cancer that is more common in children. She was treated at Advocate Children’s Hospital. This is her story in her own words.
“I don’t want you to panic.”
It’s December 2019. I’m seeing an orthopedic specialist after experiencing arm and shoulder pain for months and undergoing multiple MRIs. I’m being told I have cancer.
This wasn’t the moment I was diagnosed, but it was the beginning of my journey. The doctor talks through the different possibilities and tells me there’s a chance I have an infection in the bone. I’m a nurse. I know there was no sign of infection on my lab work. And the look on the doctor’s face said it all.
I remember crying, thoughts rushing through my head about scheduling appointments, getting referrals, choosing an oncologist. I’m a gastrointestinal cancer nurse navigator. I remove barriers so oncology patients receive timely care. Now, me and my amazing coworkers would be my navigators.
Then came my diagnosis.
After undergoing a biopsy, my doctor asked me to call her when I was home with my husband. I knew I had cancer.
Forty-two days, 10+ scans, another biopsy and a craniotomy later, I was diagnosed with Stage IV Ewings Sarcoma, a primarily pediatric bone cancer believed to have started in my shoulder and quickly spread to my head, spine, pelvis and femur.
Before beginning chemotherapy, I started egg preservation so I could have children after treatment. But when more cancer spots were found on my pelvis, it was recommended I stop fertility preservation and start emergent radiation. I wouldn’t be able to have my own children. I was devastated. I knew there were other ways to make a family, but this broke me. My physicians and I decided to take a chance and finish the preservation. My first chemotherapy and egg retrieval were on the same day – my brightest day. God was watching over me so I could finish egg retrieval.
I was admitted to the adult oncology unit at Advocate Christ Medical Center, where I worked for five years. It was reassuring knowing I had the best nurses surrounding me but hard transitioning to the role of patient. When they discovered I had a pediatric cancer, I was treated at Advocate Children’s Hospital. I was a 27-year-old nurse in a children’s hospital, but I wouldn’t have wanted to be anywhere else. I was so impressed by the care I received and am now even prouder to work for Advocate Aurora Health.
When hospitals were filling up with COVID-19 patients, I isolated completely. I was terrified of not being able to be treated if I got sick. Because of COVID, I didn’t miss any major events. My life wasn’t the only thing on pause – the whole world was.
This journey has been long, eye-opening and challenging. Chemo/radiation is no joke. Nausea. Fatigue. Mouth sores. Hair loss. No appetite. Radiation burns. Pain. Headaches. Scanxiety. We endure it all because we’re fighting for our future.
I’m blessed to have a large support group. My husband was my shoulder to lean on. My dad drove me to countless appointments and sat with me for hours. My mom and stepdad dropped everything and helped when I wasn’t feeling well or when I just needed my mom – my caregiver, house cleaner, dog watcher, friend, biggest cheerleader and the best momma. My siblings treated me like a sister and not a cancer patient, which I needed. They teased me and hung out with me. My in-laws picked up their life in Florida and came to help us. My friends in health care and my bridesmaids stood by my side throughout my entire journey.
Being a nurse with cancer had its positives and negatives. I knew a little too much, which added to the stress of cancer, but I was able to identify things happening to my body. I wasn’t sure if I’d be able to work with cancer patients again after this, but I’d be able to help them on a whole new level.
Those of us in the small community of adolescent and young adult cancer patients are just starting our adult lives. Our whole life ahead of us, abruptly halted by a life-threatening disease. Everything changes in an instant. Our entire focus shifts to fighting. I was newly married, living with my husband and dog, planning on heading back to school for a graduate degree and was ready to have children. After 11 months of chemotherapy and 12 weeks of radiation, there is currently no evidence of disease in my body.
My dreams push me forward every day. I want to advance my career and to be a mom. I want the life I’ve always dreamed of.
I always tell my patients to keep fighting. Now I take my own advice. Cancer won’t stop me.
Nicole was recently a recipient of a hope grant from the Jay’s Hope Back to Business Golf Outing. Jay’s Hope, established in memory of Jay Burger, provides young adults battling cancer with hope grants to lift their spirits, lighten their worries and brighten their day as they brave their battle. You can support pediatric and young adult patients like Nicole by making a donation here.