When I started in oncology as a triage and infusion nurse in early 2013, I had no experience with cancer patients aside from my mother’s previous breast cancer diagnosis and treatment. Thankfully, my mother, despite complications during treatment, has been well and remains cancer-free today, over 15 years later.
Oncology was a foreign world coming from the emergency department. I noticed some infusion nurses in the nurses’ station would openly cry and grieve the news of a patient’s cancer progression or death. Despite the close bonds I formed with my patients and the impact my patients had on me, I rarely felt like crying, especially not in front of my coworkers.
During small talk in social settings, people would ask, “What do you do for work?” and I would get the very predictable, “Wow, that must be so sad,” or “That sounds hard,” with a head tilt and frown. But the truth is that it never felt sad or hard. Hard days were days when we were understaffed or had nationwide shortages of leucovorin or primary fluid. Plenty of my patients had terminal diagnoses, and I just generally enjoyed taking care of them and learning about them as individuals. This continued to be true when I became a nurse practitioner and began subspecializing in neuro-oncology.
Neither my education in nursing school nor graduate school prepared me for neuro-oncology. My physician partner was freshly off his fellowship and was more than eager to teach me about neurology and a proper neurologic head-to-toe exam. He sent me articles on the current state of the most common tumors we would see in a community hospital. I read articles and watched online videos to better understand the mechanism by which certain genetic mutations in the tumor would affect growth. Thankfully, I was given the time and space to learn.
In the community setting, I mostly saw middle-aged and older patients with newly diagnosed glioblastomas, which are notoriously bad tumors. The standard of care for glioblastomas is maximal safe resection with a recovery of approximately 4 weeks, followed by concurrent radiation with temozolomide, which was generally for 6 weeks for most patients.1 The patients would then have 4 weeks to recover from radiation before they restarted temozolomide on a different dosing schedule (5 days on, 23 days off) for 6 cycles.1 When these patients experienced tumor progression, our options were very few: more surgery, more radiation, more temozolomide,2 or a switch to a chemotherapy with less evidence for effectiveness compared with first-line therapy.
Secondary to treating mostly brain tumors is understanding seizure management. When my physician partner asked, “What would you do if you saw a patient seize in an exam room?” I immediately answered, “Call a code!” The right answer for our practice was to look at your watch and time the seizure because most will stop within a few minutes. It was anxiety-provoking to hear him tell me that as long as the patient was not on top of an exam table and safely seated, staying with the patient, watching the time, and keeping calm was the course of action. If the seizure continued for several minutes, then it was appropriate for us to intervene. I eventually developed a comfort with treating generalized and focal seizures and educating patients on the use of their seizure medications.
I left the community setting amid the pandemic in 2020 in favor of a research institution that allowed me to work remotely aside from our once or twice weekly clinic. It was eye-opening and exciting to see the full spectrum of central nervous system tumors in adults and be part of the research to find better treatments. Although I still saw many terminal patients, I was more distanced from patients near the end of life because most trials generally require patients to have a high functional level of independence. Working in neuro-oncology still felt rewarding even when it was difficult.
Then it all changed very drastically in 2022. I had a baby, and I was suddenly acutely aware of my mortality. Whereas I used to pride myself on separating work and personal life, I found it much harder to get back to my baseline happiness after a day of giving bad news. The youngest patients I see in my current institute are in their late teens to early 20s. They often come with their parents. I find myself wondering how a family could possibly cope with this kind of diagnosis. The hopes and dreams you have for your child must all change in the second you hear the diagnosis. It must change how a parent views the future, possibly without their child.
The empathy I feel for patients with young children is almost paralyzing. I actively tell myself to stop imagining how their lives are impacted because I cannot actively listen and participate in our conversation if I am actively catastrophizing their situation in my mind. I want so badly to yell at the top of my lungs, “How are you not falling apart every second of the day?” I outwardly stay professional, but inside I feel crushed. When I sit and listen, I validate my patients’ feelings and I hope this provides them the affirmation they may be seeking. It also allows me to momentarily escape my downward spiral, pulls me back to the appointment, and reminds me that I am here to help, whether that help is finding a treatment option or giving permission to stop.
Elizabeth was a patient who came into my life right after my maternity leave. She was in her 40s with young children. Elizabeth was diagnosed with a glioblastoma, which portends a prognosis of 15 to 18 months.3 Parts of her appointments are tattooed in my memory. She once asked how she can prepare her children for the inevitable. I was really at a loss, and I truly don’t remember much of my response beyond suggesting she write cards for their upcoming birthdays, so they have something for years to come. I distinctly remember working remotely from home and seeing her on a telehealth appointment. I don’t recall the details of the appointment; I only remember how it made me feel. I was struggling to keep myself together. I was using every ounce of my energy to concentrate on her and not cry. I remember counting the minutes and seconds until the appointment was likely to end. As soon as the appointment ended, I slammed my laptop shut and ran into another room. I started crying as quietly as I could manage while being hysterical, not wanting to disturb my infant and mother in the next room. I didn’t want my mother to see me cry over a patient because this wasn’t who I thought I was. This was not me.
I was wrong! Now, this is me. Elizabeth was the first person who, in retrospect, made me realize that life as a neuro-oncology nurse practitioner would never be the same. I wouldn’t be able to compartmentalize work and family like I once did, and that’s OK. I see my patients, especially those with young children, and spend extra time being present to provide validation and give them the space to ask tough questions and discuss difficult topics. I allow more silence in my appointments and try not to rush to respond to allow reflection for the patient and myself. I spend that extra few seconds thinking through my responses to ensure I am understanding the patient’s perspective. I was an excellent nurse practitioner before having a child, but I definitely feel I’ve grown and now am even more empathetic toward my patients.
In preparing to write this essay, I did an internet search for Elizabeth’s obituary, which I saw soon after she passed in early 2023. I found the obituary, but I also found a small surprise I did not see in my previous search. Elizabeth wrote an article for Huffington Post before she passed about her experience with glioblastoma.4 It is poignant and profound, and it feels so evident that sometimes our patients are stronger than we think, and maybe even stronger than us.
It’s OK for your personal life to change your practice as a nurse practitioner. Allow your experiences to give you another perspective. It’s OK to cry, whether that’s at home or at the nurses’ station. It’s OK for our patients to be stronger than us. Don’t let your ability to feel emotion and empathize negatively impact how you see yourself as a strong, intelligent oncology provider. You can and are doing important and impactful work.
Elizabeth’s name and story were used with permission from her husband.
The content of this article does not necessarily reflect the views or policies of the US Department of Health and Human Services, nor does mention of trade names, commercial products, or organizations imply endorsement by the US Government.
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