For my second post on the language of breast cancer I want to focus on some of the terminology we use when talking about those who have received a cancer diagnosis. Before I get started, please know that I am not doing this as a criticism of how anyone refers to their own cancer journey. We are all different and draw strength and hope from different things. I’m a bit of a language nerd and often notice how the words we use affect others perceptions, sometimes in ways we did not intend. Words can be very powerful, but sometimes they are just words. Tonight I used a lot of them. I am sending them out on a wing and a prayer hoping my message shines through my struggle to find the words to convey it.

We’ve all heard the slogans and campaigns regarding cancer, particularly breast cancer and most often in October. I never thought much about them. I heard words like “Winning the Fight”, “Fought to the end”, “True Warrior”, “Won the battle”. The list goes on and on. Language of war, fighting and competition is common in our speech in general and particularly when we refer to cancer or cancer survivors. I never really thought much about it before I got my own diagnosis.

During those first few weeks after diagnosis I started hearing word like “warrior” and “fight” in reference to me and while I knew everyone had the best of intentions, those words didn’t resonate. I didn’t feel like I was fighting or winning anything. My world was falling apart and I was trying to do anything I could to shelter my kids from the storm while getting the best medical care I could find so I could live to see them grow up. I was making decisions about treatment, planning a cross country move and then enduring a double mastectomy all during October 2013. Inundated with pink ribbons and pink products, I was overwhelmed, scared and confused. With people I knew well, whatever language they used to talk to me about my diagnosis, I felt the love and support come through. But with people I didn’t know, I had a hard time responding.

After my pathology report came back my status was changed from 1a to 2b and chemo and radiation were no longer optional. Over the course of treatment I went completely bald, lost my eyebrows and lashes, lost weight to the point it scared me, then gained even more than I lost. I barely made it to the chemo finish line only to face more surgery and then radiation. Throughout the journey I was told that I was a “fighter”, that I would “beat this”, that I would “win”. I always felt uncomfortable with those labels but could not put my finger on why I felt that way.

Now two years after diagnosis and one year after active treatment I have a better understanding of what made me so uncomfortable. I don’t have a problem at all when other people use those labels for themselves. I know a lot of people draw strength from that imagery. And I don’t take offense when people use that type of language when referring to me as I always look at the intentions behind it rather than the choice of words. But I do have a hard time figuring out how to refer to myself.

That uncomfortable feeling I get when someone refers to me as a fighter – I think it is because in a battle or a competition or a war there has to be a winner and a loser. I don’t feel like I have won anything. The further I go on this journey the more I realize it will never really be over. Hopefully I will be dancing with N.E.D. for many years and die peacefully in my sleep sometime around my 110th birthday but in the meantime I will live with the side effects of my treatment and the knowledge that while my particular type of breast cancer does not often metastacize, it sometimes does even years after initial treatment. For me winning the fight implies that I am done with breast cancer. I got a clean K.O. and walked away the victor. Reality for me is that breast cancer will be my companion in this journey in one way or another for life. It doesn’t define me. I don’t spend a lot of time worrying about it. But it will never truly be gone.

I also have trouble using the language of war for my cancer journey because when used in a broader context, it has had an unintended effect. When we talk about cancer using terms like fight and battle and win we are placing simple either/or parameters on a situation that really requires something much more complex. Winner or loser. Victor or vanquished. Conqueror or conquered. When we say we are “winning the fight” the implication is that someone or something is losing. And while you would think the loser would be cancer, in reality the loser so far has been the metastatic breast cancer community. The unintended consequence of using a win/loss paradigm is that the general public does not understand much if anything about metastatic disease. They believe that even stage 4 breast cancer is curable and have no idea that the mean life expectancy from diagnosis is 33 months. Our society has latched on to the idea that we are winning and left our metastatic sisters and brothers by the side of the road in our victory march. Marketing blurbs, tweets, campaign slogans all boil a very complicated situation into sound bites that don’t tell the whole story. Everywhere we look we see a sea of pink, smiling faces, celebrations. So we must be winning? Right? Add to that the campaign that early detection saves lives and the unwritten implication is that if you have metastatic disease, you must have done something wrong. You must have waited too long. You must have skipped your mammograms. You must have refused treatment. You didn’t fight the good fight.

The language of war also plays into the underlying fear of death that seems to be part of the human experience. The word “cancer” invokes images of bald, emaciated, dying people.  It scares us. I think we embrace the language of victory in part because if we are victorious, then we are safe. We will never be that dying person we envision when we think about cancer. But in holding onto the image of victory, we block out any information that doesn’t fit that vision. We see a picture of a young mother with metastatic disease with a beautiful head of hair and can’t accept that her condition is terminal.

Pinktober only adds to the problem. Death doesn’t sell. But assuaging fear of death does. Pink covered happy messages sell partly because they make us think we have nothing to fear. They make cancer less scary. Battle cries makes us feel strong and courageous. We believe it won’t happen to us. We believe that if it does it won’t be life threatening. If we buy the pink products and get our mammograms on schedule we have nothing to worry about. Metastatic patients don’t fit that message so they are pushed aside and forgotten. They scare us so we avoid them.

I think everyone has stuck their head in the sand at some point in their lives. It’s human nature to filter our perceptions so we aren’t overwhelmed by negative input. But in putting on our pink blinders we have left our metastatic brothers and sisters by the side of the road, believing their reality does not apply to us when in reality 1 in 8 women will develop breast cancer over the course of their lifetime. 30% of those diagnosed with early stage disease will progress to metastatic. And 40,000 people are dying every year just in the United States.

If we are going to continue to use the language of war, we all need to shift our focus. We haven’t won the war. We aren’t even close. We have made progress. We have moved the battle lines at least in some places. And we have even won a few skirmishes. But our code of honor should demand that we leave no soldier behind. We must look our metastatic brothers and sisters in the eye and tell them we will not abandon them. Not now, not ever. We will not forget them. We will not pretend they don’t exist. And we will face the fact that any of us could easily join their ranks. They are a part of us. We can’t look away from fear or heartache. We must support each other. We must go forward together. We must carry those too weak to march in our arms while they are on this earth and in our hearts when they leave this world behind.

Fighting together doesn’t have to be all sadness and pain. We don’t have to focus solely on our losses and our battles not yet won. We can rally the troops with a shared battle cry of hope for a future that is cancer free. Remember M.A.S.H.? They weren’t just soldiers, they were beautifully imperfectly human. They not only fought side by side, but they laughed, loved, cried, had a few drinks, danced and even argued with one another. We can do that too. The key – we need to fight this war together. All of us. Yes, our hearts will break every time we lose someone from our ranks. And no, it won’t be easy.  But we will emerge victorious knowing we honored our promise and left no one behind.

You can find stories and photos of those living with metastatic breast cancer and those we have already lost at the links below:

Story Half Told features the stories of people living with metastatic breast cancer to help address the lack of understanding of metastatic breast cancer.

#iamsusan is a campaign initiated by Kelli Parker on Facebook and Twitter that highlights both the faces and stories of those living with metastatic breast cancer, and those we have lost to this horrible disease.

#numbershavenames is a social media campaign by Metavivor.  Follow them on Facebook to see their daily posts honoring the lives of those we have lost. Metavivor  uses 100% of donations for metastatic breast cancer research.

#metavivor #iamsusan #numbershavenames