With Cancer, We Don't Win or Lose — We Walk Through Something Difficult

I haven't been able to write about cancer for quite some time. Maybe you can relate? I am coming up on 19 years from my diagnosis of inflammatory breast cancer. In those 19 years, I have educated and advocated. I have started programs, testified before legislators and lobbied on Capitol Hill. I finished raising our daughters, who were 10, 12 and 17 when cancer came into our lives. Now I hold their daughters and play with them, reading books and building towers with Magna-Tiles.

Words have not come easily over the past few years, not because I am aging and losing my capacity, but because my heart is full of contradictions. So many things feel complicated when it comes to my thoughts on being a cancer survivor.

First of all, I am thankful. I mean thankful to the core of my being for the ability to live these past 19 years. Also today, a friend of mine is losing someone they love to breast cancer. She has young children and many more years she wants to live. Soon, people will say she lost her battle with cancer. Those words trouble me. They trouble me because there shouldn't be language that implies you either win or lose. But when it comes to cancer, that is what we say. Why?

Today, a wildfire started in an area where people we know live. They have horses, livestock and pets. Part of their family lives close by. There was an evacuation order and a social media post asking people to pray. As I prayed, I felt terrified — were they going to come out of this alive, would they lose their home, their animals? Would the family all get out? It moved me to my core. All I could think was that one moment their life was normal, then the next it was anything but.

Then I saw a post from Nebraska where hundreds of thousands of acres have burned, and it is a wasteland. The post stated that until they get moisture and the grass can recover, every strong wind will carry the aftermath with it. Fire had ravaged the area so badly that there were mounds of ashes everywhere for miles. It wasn't lost on me that in the ashes there could still be embers to reignite a fire.

Then it hit me. Nineteen years ago, my life changed in a moment. The aftermath has left me with an ever-changing landscape. Much like the wind is doing in the aftermath of the Nebraska fire.

I've spent years working on survivorship programs, and the more I listen, the more I feel the confusion — who helps, when, how. It's all so complicated. And I understand why. But it shouldn't be.

We shouldn't have to win or lose. We didn't sign up for this. It happened to us. It's not a competition, and no one wants a participation prize. Every person's path is different, and we don't get to decide the outcome. We do get to use our words, and we should use them carefully.

Let's stop saying "lost their battle." We could say they left a legacy of love. We could say they will be deeply missed.

Instead, those dreaded words — lost their battle — just haunt me. So many friends I have met along the way wanted so badly to live, and they weren't able to. They didn't lose, and I didn't win. We all walked through something really hard and got different outcomes.

Many times over the years, when I have tried to talk about this, people say, "Oh, don't let survivor's guilt get you down." I don't have guilt. I have an awareness that the desire to live or your ability to "fight" this disease doesn't determine who wins or loses.

I know I can't change the world. And I may be the only person who feels this way. But this is a disease that affects millions of people, and we need language that better reflects that.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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