The power of story in survivorship

I’ve been busy working on – and was honored to deliver – this talk for the Johns Hopkins Survivorship CME today. I had the auspicious task of starting off the day by addressing the “patient experience” of survivorship and, like all of their speakers today, I only had 15 minutes! (Whew – I made it!)

In the early days of my survivorship, I so often felt like I was doing it wrong. I hid it pretty well: I radiated positivity to my mom friends in the neighborhood, right before I secretly labeled and packed away the out of season clothes more carefully than usual, in case my husband was the sole surviving parent who had to retrieve them the following year. I covered my bald head with a baseball cap that said “Life is Good” which looked impressive, but that was only because I couldn’t find one that said, “Life is Scary and Altogether Uncertain”. I worried about dying a lot of the time, I cried a lot, and the knowledge that I was not being positive enough made me wonder how I could possibly think I had a fighting chance. I couldn’t possibly be doing this right.

But I found that when I shared how it really was for me, the truest parts of my story, with other survivors at first, and eventually with my patients here in the breast program, I often heard what Brene Brown calls the most powerful words in struggle: “Me, too.” In fact, in was in these moments, particularly with my patients, that I would feel most like I made a connection, and it was these moments we would both remember well even months or years later, and for which we both would feel a deep and abiding gratitude.

In the clinic, this became a little bit of a joke: providers would leave their young breast cancer patient, composed, taking notes, asking excellent questions, for a visit with me. They would return to find her red-eyed and sniffling. “You made her cry!” they would tease.

But, in my defense, here’s what would typically happen. We would talk, the patient and I, and I would explain that I had had cancer, too, that I had sat in that chair, when I was 40, and had 4 kids at home, that I remembered well how difficult those early days were for me, and might be for her, too.

And as we talked, I might ask, for example, about her children. And her eyes would meet mine in an expression of complete can-you-even-believe-this-is-happening as she listed for me their ages, how little they are. And I would say something like, “You know, my youngest was four when I was diagnosed. So I know.” And then she would begin to cry. And sometimes, sitting in and with our shared experience, we would just cry a little bit together.

This is the power of connection through story, and nowhere is this more essential, more powerful than in survivorship. Storytelling is our oldest art form and our most primitive tradition. It is our most effective tool to engage, remember and express emotion, to create connection, evoke empathy, and fully express an experience that transcends the facts and figures. In his book The Wounded Storyteller, Arthur Frank describes serious illness as “a loss of the destination and map” which guided the patient’s well self. Survivors of illness must then “learn to think differently” and they do so “by hearing themselves tell their stories, absorbing others’ reactions, and experiencing their stories being shared”.

Cancer survivors intuitively know this, somehow; if you get a group of survivors together, for any reason, they will, before too long, begin telling their stories. We tell our stories to each other in sacred detail, as if describing a landscape to a passing traveler on the road. She tells us where she has been and what she has seen and our voices rise with a recognition and relief that nears excitement: Yes, yes, I have been there too. I am sure it is the same place because it was exactly how you have described it. Now let me tell you what is just beyond the mountains up ahead. Or what you would have seen if you had followed the river. Our paths have been different, but we have seen the same landscapes, and the ones we have seen allow us to visualize the ones we have missed. We have traveled the same road.

If I were to share with you the facts of my diagnosis, the biology of my tumor, the treatment I have received, what side effects or sequelae I have to contend with, how long I have survived, we maybe could pretend that we talked about survivorship. But we would not really have talked about what those facts of survivorship looked and felt like in the seasons of an ever-changing landscape. It would not be nearly enough to make a map.

On the other hand, if I were to tell you a story of how it felt, what the experience of being diagnosed with cancer felt like, you might remember a moment in your own life, a Before & After moment after which life would never be the same. Many of us have experienced those moments, and hearing the story of someone else’s causes our bodies to remember; even years later, we may feel a lump in our throats, a stinging behind our eyes, a sinking feeling in our guts. We remember the spiraling nature of grief and acceptance as we are made to revisit the losses in different ways and at different mile markers as we travel through the new After-world. Now we have a shared experience. Now we know, not just with our minds but with our bodies, a little bit more about what it was like for you then, what it is like now. What you might need. How we can best take care of you.

The artist, painting a fresco on the ceiling, cannot create art without science. Relying on the physics of the scaffold, the chemistry of color, and the biology in bicep, he is able to achieve at greater heights than ever before. He is able to create a work of art that engages emotion, creates connection, and lays down meaning, transcending and outlasting the artist himself, making a way for and inspiring others to create as well.

Likewise, the facts and figures, the science of cancer and survivorship, are the backbone of survivorship care, but it is the survivor’s story which allows her – and us – to weave together her feelings and memories into a tapestry of meaning and purpose, to use her experience of the landscape to draw new maps to new destinations, to inhabit a changed corpus, and to embody a new identity. Acknowledging, encouraging, and silently bearing witness to the telling of these stories creates a space for the patient to truly emerge, allowing for the full expression of healing and the art that is survivorship care.

And so, I will tell you a part of my story. It starts at the beginning. We don’t yet know where it ends.

“Here. Do you see? These dots here; they look like stars.”

The radiologist is speaks to me slowly as she points out the constellation on the backlit mammogram.

 If I look very carefully, I can see something, and they do look sort of like stars, way more than they look like they could be anything bad. But, she explains gently, while she’ll need a biopsy to be certain, she is pretty sure that they are actually cancer.

And just like that, on an ordinary Tuesday afternoon, I unexpectedly became a survivor. I felt more like the anti-survivor, or whatever the opposite of a survivor would be, whatever you were if you were going to flunk this test, if you definitely would not survive, but instead might die right there on the table from the unbelievable, heart-pounding shock of it all; on the off-chance that you survived the next 15 minutes, you certainly could not possibly survive this dreaded disease and its treatment.

But I did survive, that day and the difficult days that followed, not due to any personal fortitude, but only because there didn’t seem to be another option at the time. It would be three days before I got the news for sure, and, of course, I remember the specifics in excruciating detail: the date and time of day, the spot in the kitchen where I picked up the phone, the now-familiar tone of the doctor’s voice, delivering the news as clearly and gently as she could: “It is cancer.”

It is years after that first day when I happen to run into that same radiologist one afternoon, in the stairwell of her building, which is also home to my kids’ pediatrician. I am picking up a prescription and then, there she is, walking up the stairs!, and there I am, walking down the stairs!, well enough to have left cancer behind and replace it with regular-mom stuff, light years away from that day we’d first met.

So I stop her, of course, practically tackling her in my excitement, thrilled as a girl running into her kindergarten teacher at the mall. I introduce myself and proceed to gush shamelessly, and with no regard for her undoubtedly busy schedule, about my gratitude for her kindness and honesty that first day, when she pointed out those stars, and three days later when she called to give me the news that set me on the celestial voyage.

Oh, I go on and on, proudly updating her about the treatment decisions I’ve made along the way, how well I’m doing now, how much my kids have grown up, and about the particular things she said that have stayed with me all that time. Patiently, she listens. She congratulates me on doing so well. As if I have had a thing to do with it.

I bound out of the building, marveling at my good luck: another day, another minute even, and I would have missed her! I would have missed the chance to tell her how great I am doing! I am so proud of myself. I bet she is proud of me, too! I am walking briskly, on air, in the parking lot, delighting in the thrill of victory in that place filled with so many painful memories.

And then, as I reach my old familiar minivan, the one that I drove so casually to the mammogram that day, the one that carried me as a passenger to and from surgeries and chemotherapy and a whole year of treatment afterwards, the one in which I drove carpool while bald, and often wept bitterly while alone, I have to slow down. I cannot breathe. I am gasping, sobbing, I have begun to weep.

I feel protective, motherly even, about the girl who sat in the waiting room that day, a good girl following doctor’s orders, awaiting the results of her first mammogram. She does not seem like a grown-up me as I think of it now, but a childlike version of myself, an innocent who does not see the danger ahead. I want to wave my arms and shout to her to protect her, to warn her, so that she can at least have her guard up. I can see how her world is about to be rocked, in small ways, and then larger and larger ones, and how she will be changed along the way. I can see things she won’t even realize for a long time, and I am just so sorry and sad, grieving in reverse, for all she’s going to go through. For her, for that girl that I once was, for the ways she tried to be smart and brave and make everyone proud along the way, for her my heart breaks. For her, I cry the whole way home.

This is how it is, in the post-cancer galaxy. People tell you that you will forget, one day, for a little while, about cancer, but you know that can’t possibly be true. It is impossible to imagine that you could forget about cancer for an hour, much less an entire day. Not everybody even gets the chance to ever again live without cancer, and that turns out to have nothing to do with how good a job we are doing, and everything to do with the luck of the draw.

You move on with your life in whatever way you have the opportunity to do. You don’t even notice how much better you are because you are too busy to be paying attention.

And then, one day, while you are doing great, taking your survivor self along, minding your own survivor business, something grabs you and makes you catch your breath. Something that makes you remember where you started and how far you’ve come, and you are flooded with unexpected and unbidden feelings of joy and victory, of loss and grief.

I think those memories, those feelings are always there, even if they are hidden. Like the stars, they return in their seasons for our review. It is only we who see them differently, we who are changed, season to season and year to year, in our vantage point, in our perspective. Even if, this season, we were lucky enough to be happy and busy and well. Even if, for a little while, we forgot.

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