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The Emotional Experience of Going From Patient to Provider and Back

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Leaving Boston for nursing school was one of the most difficult decisions I made in my young life. For the first time in a long time, somewhere felt like home. But my memories of Boston were clouded by the experience of having had stage IV cancer there. Some days I walked down streets that brought back such real and visceral reminders of the treatment I endured that waves of nausea came over me. Often brief, I tolerated these moments. Boston was, truthfully, the most beautiful place I had ever lived.

Boston, however, was my safety net. I had a team of clinical providers who knew not only the details of my cancer like the back of their hand, but they knew me. They knew about my love for dance. My admiration for the nursing profession. They knew how to handle my fears and frustrations. They wished me luck as I went on runs and trained for new races. They encouraged me to live this life I had to the fullest, despite the possibility of relapse. Despite the knowledge that this disease I had did not respond well to relapse therapy. That my best bet was surviving the first time around.

I held my breath. I crossed my fingers. I spoke my wishes out loud. “Please keep me well enough to get me through my next dance performance,” “I just want to become a nurse before cancer comes back,” and most profoundly, “Please, please, never make me suffer this pain again.” My wishes came true, time and time again. And I started to wonder if maybe for the first time in my life I was the lucky one. Maybe I didn’t need to keep waiting for the other shoe to drop. Maybe this whole remission thing was here to stay, forever.

During this period of time I “graduated” from the surveillance phase of my treatment follow-up. The chance of relapse shrunk exponentially, and they stopped routinely scanning my body. I realized it was time to cast a new net. I started hoping I would be accepted to my top choice nursing school, and that I would move to Philadelphia. The idea of leaving my cancer history in Boston brought light into my life. I was ready to be a nursing student and only that.

As always, life had other plans. It was a hot and humid day in August when I sat on the train from my parent’s home in New Jersey, back to Philadelphia, preparing for my first clinical rotation in OB/GYN. I was so excited to have made it to this moment. To be of service to others in their time of need. To help patients heal and to join the nursing profession. My head had been hurting all week, but since my brain surgery, this was a common occurrence. I stared at my computer, but I couldn’t focus on the words on the screen, and I began seeing flashing lights. I got home and, in a panic, I took some Benadryl, with the hopes a good night’s sleep would do the trick. Nursing school was exhausting, and I was perpetually sleep deprived after all. Throughout the last three years, I had developed skills that helped me differentiate everyday pain from tumor pain. If my knee hurt, I gave it three days. If it felt better, it wasn’t cancer. If my head hurt, I made a list of all the factors that could be contributing to this pain: grinding my teeth at night, dehydration, lack of sleep, etc. When I eliminated these factors, the pain subsided. It was not a tumor.

As I sat in the emergency room in Philadelphia, I made lists in my head, over and over again. This is likely a migraine. I’m susceptible to them since I had a craniotomy. People can have vision changes with migraines. It’s been hot and humid. I forgot to wear sunglasses on the beach yesterday. This is not cancer.

My world came to a screeching halt when the doctor returned in the morning to tell me they saw “something” hanging out in the meninges of my occipital and parietal lobes. Given my history, there was a concern for cancer recurrence in my brain. Given the abnormal biology of having my disease at 22 years old and the nature in which it presented, I was at high risk for relapse in this location. I would undergo a number of test and procedures. They admitted me to an oncology floor. They wanted chemo-certified nurses nearby in the event that I needed urgent chemotherapy. The world I had come to find peace in had once again been turned upside down.

I spent the next 10 days in the hospital grieving over the life I had now, the one I feared I had to trade in for the role of a full-time cancer patient. Over the fear of my life ending quicker than I had imagined. I thought about my funeral and who might come. How would I tell my new classmates that I would, in fact, not be joining them on this nursing journey? That they may instead see me on their clinical rotations. Bald, fragile, heartbroken. I was so angry. Why now? Why not when I was in Boston, with a job and a team that knew me. Why now, while I was thriving in nursing school. So passionate and excited for all that was to come.

After a grueling week-and-a half hospitalization the results were in, and my cancer had not returned. A huge relief, but more concerning now: what was hanging out in my brain, and how do we fix it? My oncologist worried that this was “cancer brewing,” and thus I sent myself to a cancer purgatory. A place where you don’t have cancer but you’re not free from its wrath, a place where at any moment cancer could invade your body, your mind, your heart.

For six months we watched this body of mine so closely. I spoke out loud again. “Please let me finish nursing school,” “Please be a false alarm,” and “If the cancer is going to come back, please let me survive.” Six months later, I went in for what we hoped would be my last MRI. My oncologist called me several hours later with the results. I was walking into the hospital of my clinical rotation, on the liquid oncology floor, the same floor I was admitted earlier that year. A floor that cared for many patients with diseases similar to mine.

As I walked through the hospital doors, I answered the phone to hear the results: my brain looked unremarkable, no signs of cancer. I felt elated. Free from the cancer chains. Ready to find myself and my sense of security in this world again. Ready to give all of myself to my patients.

We got to the floor and the nurse I was with brought me into her patient’s room. This patient had the same disease as I. Unlike me, he wasn’t lucky. His cancer didn’t respond to therapy and his tumor in his brain had impaired his abilities. An unbelievable amount of guilt washed over me. Moments before I was celebrating but now, how could I? Why did I get lucky in the wake of cancer? Why didn’t he? The guilt consumed me, and my grief left me stunned. I walked home that night reflecting on the sudden and drastic change in emotions this news left me within a 15-minute period of time.

This is the nursing profession. This is being a patient turned provider. This is the human experience. I couldn’t change the different cards we had been dealt, similar yet drastically different in their own way. The only thing I could do was continue to be of service to others, using my experience as an unwritten guideline to the patient experience. And so, I will.

Originally published: April 13, 2019
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