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What the Word Survivor Means to Me

by Dan DeanSurvivor, Non-Hodgkin's Lymphoma, Stage 4May 30, 2019View more posts from Dan Dean

I really dislike the word ‘survivor’.  I call myself one, simply because I don’t know what other term to use. In the 16 years since my diagnosis of non-Hodgkin’s Lymphoma, I’ve never embraced the label and here’s why:

There are way too many war metaphors

One of the hardest challenges was talking about my disease without using war metaphors: cancer ‘battle’, cancer ‘fight’, the hospital ‘battlefield’, treatments as my ‘ammo’, ‘triumph’ over cancer, cancer ‘warrior’, cancer ‘survivor’.

I couldn’t reconcile how to think of cancer as an adversary outside of me, when, in fact, it was an exponential growing of my own cells inside my body. How could I wage ‘war’ on myself? How could I ‘defeat’ my own body? The whole approach didn’t make any sense. Cancer and its reminder of mortality wasn’t ‘out there’. It was nestled right next to my heart and lungs and inside my kidneys—the systems that kept me alive.

Instead of looking to combat my cancer, I became curious about what may have caused it. Although my oncologist ruled out a genetic component, I wonder if both my mom and grandmother having had cancer was a factor. Could my diet have played a role? Was it the way I handled stress? I’ve talked with people who think spiritually cancer was a way of remembering my true self. There will never be a right answer to any of those questions, but that deep dive into self-reflection and inquiry wouldn’t have been possible by externalizing cancer as some foe to be vanquished.

In the context of war metaphors, what does it mean to ‘survive’ a cancer ‘battle’? Is it that you’ve survived the removal, zapping, or shrinking of your own cells? Or is survival simply physical—a body count of who’s left and who isn’t after treatments are over?

Perhaps survivorship should be contextualized as more a way of being. Instead of merely surviving the disease and its treatments, should we include our quality of life in that arithmetic (the survivor vs. thriver debate)?

‘Survivor’ is inadequate

As the time from the last treatment increases, survivorship becomes less about each cancer treatment, or ‘battle’, and more about moving away from the precipice of one’s mortality.

‘Survivor’, though, doesn’t apply to those living with cancer who confront and integrate the fears, lifestyle, and challenges of a persistent disease. There is no B.C. (before cancer) and A.C (after cancer) for them: active disease is woven into their ‘new normal’.

I believe the term ‘living with cancer’ is closer to the truth about what one’s real experience with and after cancer is like—whether they have active disease or not. Side and late effects from treatment and the mental and emotional fallout, which can take months or years to manifest, are persistent companions long after treatments have ended. A person may look on the outside as if cancer was just a blip on their life radar, but the struggles, fears, and lessons that came with their cancer experience long outlive the physical impact of their disease.

For instance, I made wholesale changes to my diet right after I finished my chemo treatments. In addition to eating healthy, organic meals, I added juicing and supplements to my diet. At the time, it was my way of directly responding to the damage the chemo caused and a path forward of how I wanted to life my life ‘A.C.’

What started out as an urgent need to deal with the fallout from cancer treatment ultimately blended into a lifestyle choice over time. My point being was that there was not some demarcated post-cancer line I crossed over. I continue to eat healthy because I want to keep potential disease away to the best of my ability—a distinct difference of focusing on process over an end result (kind of like living with cancer vs. survivorship).

What have you survived?

Surviving cancer isn’t like stamping a punch-card and calling it a day. But it is interesting to know how people generally make peace or don’t with their cancer experience.

Research suggests that folks are divided into three camps. The first group says that cancer was a momentary event that happened to them and they try to get back to their ‘normal’ life once treatments are over.

The second group sees cancer as a huge warning sign to live their life in a completely different way and, in turn, do a complete 180 in how they live most aspects of their lives.

The third group looks at cancer as a kind of lesson and integrates certain aspects of how they want to live into the way they went about their business pre-cancer.  The integrative approach is holistic and the healthiest; the folks in groups one or two can naturally develop an integrative approach over time, if they allow it.

I dove into the second group right after treatment ended, changing the way I ate, how I spent my free time, and what I wanted to do for my vocation. Over time, my needs and wants changed as I got farther away from treatment time and settled more fully into my new normal.

Eventually, I did come to integrate my cancer experience so that it was a “both/and” with my old self, instead of an “either/or”.

My point is that if cancer creates a fundamental shift in how you view your body, mind, and soul, which can change and become nuanced over time, what does it mean to survive cancer?

What’s in a label?

Most of you reading this article probably have a high school diploma. How many times in a job interview or on a date did you tell someone that you were a high school graduate? Probably no one. Ever.

That may be a silly example, but it’s an illustrative one. Think about what labels you use to describe your cancer experience. If you talk about yourself as a survivor, why is it important to classify yourself in that way?

For me, as I mentioned, it’s convenience. If someone asks, I don’t know a more succinct way to explain my cancer experience in under 50 words so I use that. For others, it’s a celebratory term of getting through a horrendous experience. Some may use the label to draw sympathy. There are multiple reasons as to why we use the survivor label.

Because of my professional work, it’s hard for my survivorship not to come up at some point during each day. And there are multiple times in a day and many days where I wish I could drop the survivor label and just be Dan.

And, in fact, I do that. Not everyone I come into contact with knows I’m a survivor. That’s perfectly ok with me because it’s not necessary for them to know I am one. The moment you attach a label to yourself, whether it’s survivor, parent, electrician, or even—you guessed it—high school graduate, it’s as if you put a little tiny pin in your life story that says, ‘this is ME! Pay attention!’

Any label comes with its set of implicit and explicit biases and expectations, not all of which are shared by two people. I’m judicious about where, when and with whom people know I’m a survivor not just because I don’t know what their expectations are, but also it’s been 16 years since I was last treated for cancer.

The person I am today is as much influenced by cancer as it is by other life events. The point where cancer survivorship’s influence ends and the impact from another one of my life experiences begins is too murky to really tease out. To distill or localize this congregation of life experience into a few keywords doesn’t always do me or the other person justice.

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