Words About Cancer Matter

There are lots of words used in cancer. Words to describe patients, conditions, treatments, test results, etc. Words really matter! For the first time (at least that I am aware of!) in my life, I was told that my brain is “unremarkable.” What was my first reaction? “F you! My brain is absolutely remarkable!”

Then I learned, that “unremarkable” in cancer is a good thing. So interesting, isn’t it? Why can’t they just use words like normal, stable, no disease, clear, etc.? I guess medicine has a language of its own. But it takes getting used to.

Unremarkable and stable become the words we hope to hear. When, in normal life, neither of those are great words that we strive for. Another favorite? “Unrelated.” What I have learned is that “unrelated” in medicine really means “we don’t understand how it’s related.” I have two primary cancers — kidney cancer and an advanced pancreatic neuroendocrine tumor — and I have been told that they are unrelated. I am a finite vessel. How can they truly be unrelated? I get that the technology and science don’t exist yet to explain how they are related, but come on, they are!

Let’s go to the more controversial topic. Guess what I don't like to call myself? A cancer survivor. To me, a survivor is someone who's gone through something and comes out the other side. While my cancer is treatable, it's pretty much not curable, which technically means I will never be a survivor.

Also, what if someone doesn't survive (or chooses not to)? It almost feels like there's some judgment in there. Most people with cancer will do anything they can to overcome it and live happily and even better lives, whether they are living with it or are "cured." But if you don't survive it (or if you don't want to survive it), are you a failure? I feel like people will question if you did everything you could to survive. "Survivor" can be a loaded term in the community of people who have cancer.

I also don’t like being labeled. I am not the same as everyone else, and as soon as you apply a label to me, I lose my uniqueness. I always opt to focus on the individual as opposed to the group. We are all different and have different sensibilities. We need people to respect each other's individuality.

Here are some other terms I don't like. And then I will get into the ones I do.

• Cancer warrior — I am not at war with my cancer. Like it or not, my cancer is a part of me, and I will never be at war with myself. As hard as this might be for some people to understand, there is good that has come from my cancer too. As a friend once said, “Cancer is like a gift wrapped in barbed wire.”
• Cancer patient — this one is my soap box. My cancer does not define me or who I am, my “Burtness” (a term I use to describe how much I feel like myself) does. I am Burt, who happens to have cancer, like I happen to have other health issues (cancer is just a higher degree of difficulty).
• Healthcare/Patient Advocate — I use this term but not really sure if I like it. I am really a Burt Advocate or a People Like Burt Advocate. We all think differently, have different needs and need advocating in different ways. I always have a problem with generic labels, and although the Healthcare/Patient Advocate falls into the generic category, it's pretty accepted and people get it. I also feel like it doesn't carry any judgment or negative connotations.

I like individualized things and things with personality. So as discussed above, Burt who happens to have cancer is fine. My two new faves, that are generic but at least have attitude are:

• Cancer badass (huge shout out to my new BFF Bethany Joy, who brought this one to my attention).
• Cancer beast — I made it up, but I kind of like it. To me, it means that I am dealing with it, I am stronger than my setbacks, I will use it to my advantage, and I will thrive with it.
• Cancer gangsta — this one hasn’t really caught on yet.

These don't imply anything other than the fact that you are playing the hand you were dealt and playing it to the best of your abilities. I guess my parting thought is to think about the individual and ask them how they refer to themselves (and want to be referred to their name is a great place to start instead of a label) and why they choose what they do. We are all unique. We need to remember that.

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