Recurrence and the Choices of a Caregiver

July 11 marked six years since my sister was diagnosed with stage 4 cancer. Her battle with cancer was extraordinarily difficult, and even when remission was gained, we were told that she was in the 90th percentile for relapse. It took years to achieve remission, and since January 28th, 2016, when they told me she was in remission, I have metaphorically been holding my breath that once the magical five-year mark came and she could use 'cure' instead of 'remission,' her chance of recurrence would drop. However, her odds of secondary cancer would begin to grow. Likely, if she were to be diagnosed with secondary cancer, it would be from the immense amounts of treatments she endured to gain remission.

In May, my sister went through what we thought was just another cancer scare. I cannot even tell you how many we have had those because while I meticulously kept track of so much during cancer, I did not keep tabs on this. The thing with cancer is that it is invasive and never truly leaves your life. In this case, she had a swollen lymph node. It was worrisome because it is a lymph node that was engorged the last time she had cancer. It was disconcerting because how can one not worry? After all, this is cancer we are talking about.

In the beginning, each scare felt like a punch in the gut. Every lump, bump and bruise I saw worried me that it was a sign that cancer had returned. Whenever I would do a routine physical on her and I found something abnormal, I remained calm to not worry her. I would remove my gloves, she would get dressed, and I would go to take my own shower and let the tears flow.

It was the same routine with each abnormality. I would reach out to her team; they would order labs and weigh doing a scan. She had so many PET/CT scans that it was a question of scanning immediately or waiting for a bench marker date post-transplant to get an image. I am aware that we err on the side of caution with scans, but it took a long time for me to be okay with doing so. Her cancer was so aggressive, and she had waited so long to be seen that it was late-stage last time. So, I always worried that waiting for a scan was like giving any cancer that may exist a chance to ravage her as her previous cancer had. Sadly, we have since learned that this was not just another scare, but the remission we thought she was in was a false remission, and cancer never entirely went away.

As her caregiver, it was my job to take care of her. I walked beside my sister through everything that her cancer journey encompassed, from diagnosis to transplant and every up and down as we fought to get to remission. Initially, after she gained remission, she remained in my care, but that is no longer the case today. I am a nursing student now, and I will not be filling the role of caregiver this time. My choice to not assume the caregiver role does not mean that I worry or care any less.

I would change so much about cancer. First and foremost, I would change my sister ever being diagnosed with cancer. I wish that cancer had not ever been a part of our lives. The reality is that it is not something that can be changed. I can change this time, though; I can make different choices than I did the first time. As a caregiver, I sacrificed my own life and my future for the betterment of my sister. And while I am thrilled that the outcome was her gaining remission, it could have gone the other way.

In no way am I saying that I am a martyr for my choice or that I should be lauded for the decision that I made. I became a caregiver having no idea what that role would entail. Had I known, I am not confident that I would have assumed that role. Cancer takes away choices that we do not get to make because the disease makes them for us. This is a choice that I do have and one that I have given much thought to.

I recognize that I am a nursing student because my sister had cancer. As an oncology nurse, I hope to help others battle cancer. While my sister battles cancer this time, I will be her sister. I will be there for her because I do not believe that anybody should walk the cancer journey alone. That, though, does not mean that I am obligated to assume the role of caregiver again.

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