What’s in a Name? How I Chose ‘Person’ Over ‘Survivor’ After Cancer

Like many people, I subscribe to a variety of newsletters, websites, support groups, and so on. One such site has chat rooms for people diagnosed with a variety of blood cancers, and the moderator posted the following question: If you could choose a word other than "survivor" to describe yourself following diagnosis, what would it be? Having been successfully treated for follicular lymphoma — a form of blood cancer that is considered very treatable, but chronic and incurable — in July 2020, this is a significant question. Answers from other posters varied widely, including, but not limited to, survivor, warrior, thriver, veteran, patient, reliver, maintaining, tenacity, fighter, and far too many more to list here.

My answer was different; it was “person”. Here’s the thing: yes, I have cancer. Yes, it is considered incurable by current medical treatment (CAR T is a possible cure, but that’s a topic for a different essay). Yes, I am currently NED (No Evidence of Disease; remission, it turns out, while in common usage, is not a medical term). Yes, for a significant period of time — the time I was in primary treatment, the second half of 2020 — it was the focus of my life. But I am not defined by cancer; my life goes far beyond that. I am more than a medical diagnosis. I am more than just someone who was treated for cancer.

Some of this is influenced by my career; for several decades, I taught middle school special education students, students who had a variety of learning disabilities, students who were often identified as “the wheelchair kid” or “the dyslexic kid” or some other identification that reduced them to a diagnosis, and struggled to convince other people to see those students as people first, and not define them by, or as, their disability.

Some of this has been influenced by society. Certain types of cancer are very well known, and they fundraise frequently, which means they advertise frequently. Their advertising helps to drive the use of words like “warrior”, “survivor”, “thriver”, and “fighter” — and not so coincidentally, the idea that anyone with cancer must continue in treatment, no matter what, because winning the “fight” matters; this is a different, but related, issue, which impacts cancer treatment as a whole, as well as how people diagnosed with cancer view themselves, and how they view their journey through treatment. It also impacts how their family and friends view decisions to continue or discontinue treatment, if treatment is ineffective or cancer recurs. It ignores all of the negative effects of cancer treatment on the person being treated, and the reasons a person may have for refusing further treatment.

Some of this is influenced by society as a whole, which also often identifies people by a single characteristic — labels like alcoholic, disabled, poor, or abused, or labels referring to racial, gender, or religious identities, or to marital status. I’ve been divorced for over 30 years, following a seven — year marriage, but to society (and a wide variety of surveys), I am, and will always be, divorced, unless I remarry.

The problem, for me, is not with the categorization, but with the idea that a single category is the sole and only important characteristic. In this case, the idea that my identity is ineluctably and eternally tied to what I call myself following cancer treatment.

Did I survive cancer? So far, I have. But during that same time, I did a lot of other things too, some influenced by cancer, some made more difficult by cancer, and some totally unrelated to cancer. Cancer is part of who I am today, but it does not define me.

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