I don't hate survivors

  I don’t hate survivors. I hate that that's become the story we tell about breast cancer.

October is almost here.

This will be my fourth Breast Cancer Awareness Month since I was diagnosed, and every year I find myself a little more uncomfortable with the word awareness. Because what, exactly, are we aware of?

Soon there will be pink ribbons and walks and football players wearing pink socks. There will be reminders about mammograms and early detection, photographs of women celebrating their last chemotherapy treatment, bell-ringing videos and stories that begin with a diagnosis and end with some version of she beat it.

I understand why we tell those stories. I absolutely want women to get to live them. But somewhere along the way, one breast cancer story became the breast cancer story.

Some of us are still here without an ending.

A couple of weeks ago, I sat in my ophthalmologist’s office while she examined my eyes. She had last seen me six weeks earlier, and the change in my vision startled her. When I told her I had received chemotherapy the day before, she was shocked. Had she known what was happening to my eyes, she told me, she would not have wanted me to receive that treatment. If I were to continue on this drug, my next infusion would need to be skipped.

My vision is being damaged. I am an artist.

I almost don’t know what else I need to say after those two sentences.

My eyes are how I make my work. Painting has been one of the places I have gone through all of this, not to escape my life, but to live it. To create something, express what I sometimes cannot say and heal in whatever ways healing is still available to me.

I need the treatment and I need my eyes. Now suddenly those two things are fighting each other.

Almost four years into breast cancer, I would never have guessed that protecting my eyesight might become part of treating it.

For a month devoted to breast cancer awareness, it is remarkable how extraordinarily narrow our awareness still is.

Before breast cancer entered my life, mine was narrow too. I knew about lumps and mammograms. I knew chemotherapy could take your hair and surgery could take your breasts. I knew about early detection, remission and recurrence, at least in the abstract.

 I thought I understood breast cancer.

 I didn’t.

 I didn’t know that treatment could become a way of life. That you could look perfectly well while living with incurable cancer. A treatment could work beautifully until one day it didn’t. That the medicine you desperately needed could threaten something else you desperately needed.

I certainly didn’t understand how much of living with metastatic breast cancer would simply be waiting to learn what happens next.

I am waiting again.

The treatment I am on appears to have stopped doing what we needed it to do. I was on it for three months so I can argue that it never did. My scans were moved up, and next week I begin additional scans and testing for a clinical trial.

Every time a treatment stops working, there is a question underneath the search for the next one that I don’t know how to make sound better than it is:

What if I’m not one of the people who gets the drug that works?

We hear those stories, the new drug that changed everything. A clinical trial that gave someone years. The person who responded when no one expected her to.

I love those stories. I would very much like to become one.

When another treatment fails, there is a smaller and much scarier question underneath all that hope:

 Will there be one for me?

The clinical trial we are looking at scares me and at the same time, I very much want it. If I qualify and am assigned to a particular arm of the trial, it involves surgery. There are still scans, testing and assessments between here and there. I don’t know yet whether that will be my path. I am hoping to find out soon. In the meantime they have reserved the operating room and a date is sitting on the calendar.

October 27.

October. Breast Cancer Awareness Month.

While the world turns pink, I may be in an operating room trying an experimental approach because another treatment didn’t work. The timing is almost absurd.

I think that’s why I’ve been thinking so much about the story we tell. We like a good ending:

Diagnosis. Treatment. Bell. Survivor.

There is relief in that story. There is hope in it and, for so many women, it is also true. Except even that ending often isn’t really an ending. People look at you and say, “You’re all done. You kicked cancer’s ass.” Meanwhile, you feel like cancer kicked yours.

Treatment can leave behind a body you barely recognize. For many women, finishing chemotherapy or radiation is followed by years of medication, sometimes with side effects that make ordinary life harder than anyone looking at them would know. Underneath all of it is the question that followed me when my own cancer was still considered early stage:

Will it come back?

You can be finished with treatment and not feel finished with cancer. You are called a survivor while swallowing a pill every morning because of it. Everyone wants you to celebrate while you’re still trying to understand what just happened to your body and your life. Then you may spend years learning to live with the possibility that it might return.

Mine came back.

Metastatic breast cancer doesn’t give me even the illusion of an end date because treatment doesn’t have an end date. Something works until it doesn’t, and then we look for what comes next.  

There are so many of us living in the enormous space between those who survived and those who didn’t.

I have had many experiences of someone who sees (baseball cap with no hair) that I have breast cancer and is ready to tell me she is a survivor. It has happened enough times now that I recognize what she is trying to give me. Herself.

I had breast cancer and I beat it. I’m still here. This will happen for you. You are going to be fine.

That isn’t particularly an unkind thing. It certainly isn’t meant to be, but for a moment, it asks me to leave the reality of my disease and step into hers.

I have already had the recurrence she is reassuring me won’t happen. My cancer has already traveled somewhere it wasn’t supposed to go. I am living the part of the story that you’ll be fine cannot fix.

It is a strange kind of loneliness in having other people be more certain about your future than your doctors are.

When hope cannot make room for the reality of someone’s circumstances, it stops feeling like hope. It starts feeling like there is no room for the truth.

At the same time, that still doesn’t make her story less true.

I want the woman who finished treatment twenty years ago to celebrate every single one of those years. I want the newly diagnosed woman to see her and think, Maybe that can be me. Ring the bell and take the celebratory photographs. I want every person who loves the word survivor to claim it.

The survivor didn’t make her story too big. We made everyone else’s too small.

That is the part of Breast Cancer Awareness Month I wish we understood better.

Awareness can hold the woman who finished treatment and the woman who never will. It can celebrate remission without looking away from recurrence. We can tell stories of extraordinary responses while admitting that not everyone gets one.

It can make room for women living ordinary lives while something life-altering is happening inside their bodies.

There are women going to work and picking up groceries. They are making dinner and making art. Laughing with their husbands as well as having disagreements. Answering emails while waiting for appointments. Looking perfectly healthy in photographs taken on days when they are anything but.

None of them needs to become an inspirational story for us to tolerate looking at her.

Not one of them lost because the medicine eventually failed her.

That’s another piece of our language I’ve become increasingly uncomfortable with. The battle language. She fought, she beat it, she lost. 

I know what people mean when they say these things. They are usually trying to honor someone. But if responding to treatment means I won, what does it mean when I stop responding?

Did I fight less? Was I not positive enough? Did the woman who died simply not battle as hard as the woman standing beside her who lived?

Of course not.

There is biology here. Medicine. Research. Access. Timing. Luck. Things we understand and things we still don’t. There is no moral victory.

That's what I want awareness to become: not darker, but wider.

There is no need to take the survivor out of the story to make room for me. Just move over.

Let the woman whose cancer came back stand beside her. The woman whose treatment doesn’t have an end date, the one learning the name of another drug and reading a clinical trial consent form at her kitchen table.

The artist sitting in an ophthalmologist’s chair learning that the treatment she needs may be damaging her vision.

Let her be part of the breast cancer story too. She isn’t a cautionary tale. She is not fallen soldier. She didn’t fail at surviving.

We just failed to tell her story.