Former Nurse Accepts a New Reality After a Brain Tumor Diagnosis
, by Steve, IDH-Mutated Astrocytoma Survivor
Steve was diagnosed with an IDH-mutated astrocytoma in September of 2019.
Steve was a nurse for many years and found meaning in caring for others. But when he was unable to return to work after being diagnosed with an IDH-mutated astrocytoma, he found other ways to lead a fulfilling life.
Working as a rapid response and emergency room (ER) nurse, I encountered many situations that helped me learn how to remain calm while helping patients and their families. Then I was diagnosed with a brain tumor and had to face a tough new reality: I couldn’t even take care of myself.
Early on in my career, I had tried several different jobs. Then I thought about my three brothers who had been in the military. Two had been in the Army and one had been in the Navy Reserve. I thought I could be an Army fireman, but the recruiter only gave me two choices: I could either help rig and test parachutes, or I could be a medic. I chose to be a medic. That’s when my career in health care started, in June of 1992.
I was stationed at Walter Reed Army Medical Center in Washington, D.C. for four years. In June of 1996, I got out of the Army while the Bosnian War was going on. I worked for a year as an orthopedics technician at Montgomery General Hospital and then transferred to the ER. That motivated me, and I went back to college to get my degree in nursing in 2003. I eventually became the night charge nurse. It was a challenging time with lots of long nights and staff turnover. But there were good times as well: I met my wife, who was an ER doctor at the time.
In January of 2005, I started working at Suburban Hospital near the main NIH campus. I spent many years in the ER and then helped form the rapid response team. We covered the entire hospital—from assisting the trauma team and treating strokes and cardiac arrests to any issues in the wards, spanning serious concerns to starting tough IVs. I had so much work that I would come back to the hospital to do paperwork on my days off. My last year of working was in interventional radiology.
I worked at Suburban Hospital for 15 years. And then, on September 23, 2019, I came home from a full day of work and had a seizure. That was when my life changed.
Adjusting to My Brain Tumor Diagnosis
When I arrived at the hospital after seizing, they performed a computerized tomography (CT) scan and a magnetic resonance imaging (MRI) scan, which showed a brain tumor called an IDH-mutated astrocytoma. Exactly a month later, on October 23, 2019, I had brain surgery at NIH. That’s when my ego was really put to the test, because I had to rely on my wife to care for me.
I had a hard time finding the words to express myself and remembering words. I could think but I could not form the words to say what I was thinking. I remember more words now, but I still sometimes have difficulty. I also have trouble concentrating on conversations for more than 30 minutes. For a while, I held out hope that I could return to work. But, four years later, it’s still too hard to focus.
After the brain surgery, I underwent radiation therapy and chemotherapy. During the chemotherapy treatment I was told to be careful lifting even 10 pounds. I thought I could just roll a heavy potted plant, but I hurt my left shoulder, which was very painful. But I couldn’t go to rehab until after I’d finished my chemotherapy. I didn’t have much of an appetite during that time, and I lost about 50 pounds. I was very weak and barely had any energy.
The COVID-19 pandemic started soon after my diagnosis, and so I couldn’t distract myself from my physical ailments by seeing friends and family. I missed helping my ER patients. I worried that I would continue to have seizures and be forced to move to assisted living. I also became upset and overwhelmed by all the violence in the TV shows, movies, and video games that I used to enjoy. Once I removed those activities from my life, I could finally feel the pressure start to lift.
I didn’t want to lose out on helping people, so I decided to focus on aiding my wife in any way I could. After all, she’s someone I love so much. Then I began getting my strength back. I started taking walks outside, using my exercise bike, and chopping wood for our wood burning stove. I also immersed myself in one of my favorite hobbies: wildlife photography. I’ve enjoyed taking pictures of birds and other animals for many years, and now it helps to calm me down when life starts to feel overwhelming.
Steve's photos of the hummingbirds in his garden.
Coming to Terms with My New Life
Today, I continue to have regular check-ups with my NCI-CONNECT clinician, Byram Ozer, M.D., Ph.D. I’m also participating in an NIH research study led by Jing Wu, M.D., Ph.D., which focuses on tumors like mine that contain IDH mutations.
I wouldn’t be where I am today if I hadn’t faced my darkest thoughts. It’s important to acknowledge them and talk through them. Once I did that, I was able to find a balance between challenging myself but not pushing too hard. I work on getting stronger every day, but I’m careful not to overdo it. I’ve accepted that my life has changed and that I have new limitations. But I don’t let those limitations prevent me from finding happiness.
These days, one of my favorite pastimes is gardening—experimenting with different flowers and seeing what I can grow. My wife and I sit together on our deck and watch the hummingbirds, and I take pictures of them as they visit the flowers. These are some of the most beautiful moments of my new reality.