Sunday, May 12, 2013

Terminology

I have a bone to pick.

More and more often, I come across blogs, or Twitter posts, or Facebook status updates from or about women with Stage 4 breast cancer referring to it as terminal. And of course it is for some, but to me, terminal implies imminent death, not just incurable disease. For example, Parkinson's and diabetes are also incurable, and the people I know with those diseases don't characterize themselves as terminally ill.

My perspective on this has led me into some interesting discussions lately.

And it may be just semantics, but I think words matter. I have read the articles about how mindful we must be with our language describing how we approach this disease. Are we warriors in battle? If someone loses their fight, does that imply they somehow weren't strong enough? Language is powerful. And we should choose our words carefully so that we honor all of us who are afflicted with this damn disease, however each of us chooses to go up against it.

In my mind, we have to be just as careful about how we categorize ourselves, even when handed a devastating diagnosis. Yes, being Stage 4 is scary: The doctors visits never end, the world of treatments and scans and having an ugly port in your chest are ever present, and there is always the fear of What if treatment stops working? lurking closer to the surface of your brain than you'd like.

And while the statistics are somewhat shitty for those of us with advanced breast cancer, the latest statistics are at least three years old. This means they don't tell the story of medicines that have been approved in the last couple of years, so they cannot incorporate current medical protocol. They don't tell the story of any one individual, because statistics cannot do that, either. What statistics do is group together everyone who's diagnosed with Stage 4 breast cancer, whether they are 26 or 62 at initial diagnosis, whether they are obese or fit, whether their breast cancer is inflammatory or HER-2 positive or triple negative, whether their scans show a few hotspots in their lymphatic system or significant organ involvement.

I'm not trying to trivialize my illness here. I realize (God, do I realize) that too many people still die of breast cancer--about 40,000 will this year in the U.S. alone. Forty thousand. For every single one of them, this disease is terminal.

However, for many of us--for more and more of us as advances in science are made--a Stage 4 diagnosis does not equal an automatic death sentence. As my doctors--some of the best in the country in this field--have said, in many cases advanced breast cancer can be a chronic condition, maybe not curable, but treatable and manageable long-term. This idea, that what I have is a chronic rather than terminal disease, gives me comfort.

Perhaps I'm being naive or ignoring the 900-pound gorilla in the room here, but there is not a day that goes by that I don't think about cancer, so I don't think I'm taking an all rainbows and unicorns approach here.

I have another scan this week. I am all-too-aware of the implications of my diagnosis. I start to imagine the what-ifs, and my heart hurts. In line at the post office the other day, a mom and her two teenagers were flipping through their passport photos, joking about what terrible pictures they'd all taken, ribbing each other for having lopsided smiles or looking tired. And I started crying, right there in the damn post office line, because I had a fleeting thought wondering whether I'd get to plan trips that require a passport with my teenager someday.

Which is why I think it's even more important to inject some hope into the terminology we use to describe this godawful disease.

Under the Americans with Disabilities Act, to qualify for protections under the law, to be considered disabled for legal purposes due to cancer, you have to show that the disease has interfered with a major life function. Menopause--even chemically-induced, twenty-years-earlier-than-you'd-planned-it menopause--doesn't count. (Clearly, men wrote this law). As it stands today, I'm not sure I could qualify for a handicapped sticker on my car. To me, then, it seems--at best--disingenuous to call my disease terminal. At worst, I think I'd be tempting fate.

Call this disease many things. Call it the devil and a thief. Get out your best potty mouth and call it all sorts of ugly names you'd be embarrassed to say around your grandmother. But unless your doctor has given you a time stamp (and even then, still consider being careful with your words), please don't call this disease terminal. Not for this Stage 4 girl.

2 comments:

  1. Jen, it is this viewpoint that makes it a pure joy to be your friend!

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