By the time I was diagnosed with metastatic cancer in December 2008, the cancer had spread from breast to bones, fracturing two vertebrae and camping out in my pelvis and hips. Intense treatment regimen made me even sicker, forcing a trip to the ER and a New Year’s Eve in the hospital talking with my husband about where I would be buried.
While family and friends immediately located statistics on my prognosis, it took being weaned off oxycodone before it occurred to me to find what others had found: the pronouncement that five years out, eight percent of people who have the cancer I have are dead.
As a religion professor, I get paid to talk about God. But being diagnosed with stage IV cancer left me without words for (or directed toward) God, without words for what it might mean to live with or in spite of incurable cancer.
Effects of treatment and back surgery made death’s nearness seem even nearer. I struggled to get out of bed and dress myself; I couldn’t drive to and from the mountains of appointments. I resigned from virtually every part of my full and wonderful life.
When I cried my way through an entire appointment, the oncologist referred me to a cancer counselor. The counselor encouraged me to write letters to my daughters for them to open on their graduations, wedding days, expressing how much I wish I could be there to celebrate their special day.
But as winter turned to spring, the pain from back surgery receded enough for me to take off the Fentanyl patch and start physical therapy. I started driving again and even made a couple meals each week.
After months of being overwhelmed by the incurable status of my cancerous life and fearing the end was near, I went into remission, a lovely, disorienting, state of being.
Friends and family through me the party of a lifetime, and I interpreted my cancer story in light of the dominant version of the Christian story I know so well:
And in this feasting amid the crying and the grieving, my life mapped the movement of the Christian gospel story in a way I never imagined it could: I have experienced firsthand a death and a resurrection. I have witnessed new life growing out of the ashes of death and destruction. It doesn’t get more Christian than that.
For months following my diagnosis it looked likely that this cancer story would swallow me whole. When it didn’t, it was the Christian story that helped make sense of what had happened. Dawn had come. I had been given new life.
In the past nine years I have lost and found remission not once, but three times. And while any day with remission is better than any day without it, there are lots of days when the death-to-new-life storyline seems too constrained to hold the frayed edges of life with cancer.
From the earliest days of my cancer story, the diagnosis-treatment-survivorship plotline has seemed too streamlined, too linear, to allow enough space for the incurable version I’m living. The fickle status of remission, ongoing oncology visits and chemo treatments leaves me searching for bigger versions of the stories that interpret my life.
While our tellings of the Christian story bend toward resolution, the plots of our own lives tend to stubbornly resist it. One insight from the field of trauma studies is that living in the aftermath of traumatic events requires attending to ways traumatic after effects interrupt life in the present. Emerging research on illness-related trauma can contribute to a more complicated telling of the Christian story that makes more space for those traumatized by serious illness.
My new book, Glimpsing Resurrection, explores what it’s like to become undone by cancer and how the lens of trauma enables us to better understand the long-lasting emotional, psychological, and spiritual effects of illness. Paying closer attention to places of lament and irresolution in the biblical narrative helps create a spaciousness that can hold our undoneness. The language of trauma and the practice of lament equip us to better minister to those who live with serious illness, and when the trauma of illness is acknowledged and addressed, it becomes possible, even when illness remains, to glimpse resurrection, both here and now and in the life to come.
(These are remarks Deanna gave at the 2017 Nordic American Thanksgiving Breakfast, November 21, 2017, in Bloomington, MN)
For everything there is a season, and a time for every matter under heaven. . . . a time to weep and a time to laugh, a time to mourn and a time to dance (Eccl. 3.1, 4)
We stand today on the cusp of the holiday season, a time (we hear from the endless advertising) to laugh, to sing, to entertain, to dance, to revel in the wonderfulness of it all. It’s the hap-happiest time of the year. It’s a season that’s supposed to overflow with one side of the Ecclesiastes equation—to be a time when all the good things are rolled into one.
But the author of Ecclesiastes offers a different vision: that the seasons of our lives are most often a mixture of both. That it’s not always possible to have the joyous neatly separated from the sorrowful, that in this life, the beautiful and the painful often go hand-in-hand.
I think there’s wisdom in Ecclesiastes for us no matter what time of year it is. But especially at this celebratory time of year, the message in these verses seems particularly important.
So I’m interested in thinking about what happens when we acknowledge the holiday season as a time where both joy and sorrow are present. I’m interested in considering the holiday season as a time for lament and a time for hope.
I have to admit that before 2008 I wasn’t nearly as aware of or interested in the practice of lament. By lament I mean the expression of sadness, grief, mourning that comes from experiencing the shadow sides of life. But right in the middle of the most wonderful time of year, right when silver bells were ringing, I was diagnosed with incurable stage IV cancer days after my 42nd birthday. Rather than decorating a tree at home I was living at Abbott Northwestern Hospital, spending my days being wheeled through the halls from one scan to another, one radiation treatment to another. I’m a professor, which means I’m a professional talker of sorts, and it was jarring for me to go from living in an abundance of words to a space where words were hard to come by.
In those early December days of the diagnosis, those who loved me understood the severity of my condition better than I did. They wept, and I remained word-less, unsure about how breast cancer could break two of my vertebrae, about why and how breast cancer had spread to a dozen places in my bones. In a season that’s dedicated to celebrating, we found ourselves in a season of sorrow, of mourning–of lament.
One of the gifts of our religious traditions is that they offer us words for the times when words grow scarce. While words from the psalms—such as psalm 23—became even more important to me during these dark December days, I slowly grew more aware of the words offered up in the psalms that focus on the experience of lament. Psalms like Psalm 22, one that’s full of words that Jesus used when he cried out from the cross: “My God my God why have you forsaken me?” The Psalmist continues: “I cry out and you are silent; Do not be far from me for trouble is near.”
We often think of words of the psalms as focused on praise and thanksgiving, words that offer comfort to those who sorrow–and all of those things are true. But it is also true that forty percent of the 150 psalms in the Bible—that’s sixty psalms—are dedicated to lament. They are full of cries of anguish, of brokenness, of the absence of God. We don’t talk about this enough—that cries of lament are cries from within the experience of faith—it’s true that expressions of lament are present throughout the Bible, but especially in the psalms. The psalms are prayers and hymns that are meant to be used by those who are enduring a season of sorrow.
As is the case for anyone who endures a traumatic event—the world looked different to me after my cancer diagnosis. My very first public outing after being released from the hospital was to attend a Santa Lucia choir performance sponsored by the American Swedish Institute. Both my daughters—ages 12 and 9 at the time—were in the choir. This centuries-old practice of singing into the darkness suddenly looked different to me, too: the story of Santa Lucia’s suffering and martyrdom made itself felt as we gathered in that downtown cathedral. At the darkest time of the year, we remember the life of a saint whose life was marked by hardship; we gather into a space alight with candles and singing, a ritual that holds the season of sorrow together with the season of hope.
On that dark December 13th in 2008, I wondered if it was the last time I would see my girls sing in a Lucia performance. I felt with aching clarity the power of the young voices singing the dark away, even as the darkness seemed to be at its most powerful.
At its worst, deep, prolonged suffering can overwhelm; it can crush; it can rob us of the ability to see the season as anything more than a time dominated by awfulness. During those early days of December 2008, it often felt that there was simply no way I could endure the cancer that had been ushered into my life and into the lives of those I love the most.
But as I continue to be granted more time to figure out how to live with advanced-stage cancer, I have grown more aware of how this season of joy is very often, also, a season of sorrow for so so many. It’s a time to mourn lost health, or a time to grieve that one who is beloved to us will be absent at this year’s holiday gatherings.
Framed in a religious context, this season leading up to Christmas is called Advent, which is a time of watching, of waiting, a time spent in darkness hoping for light. And while Christmas is commonly understood as a time to celebrate, a number of hymns of the season don’t want us to forget that this day when Christians celebrate God becoming flesh cannot be separated from the later part of the story—the parts where God made flesh undergoes suffering and death.
All this may sound like I’m counseling against laughing and dancing and singing and celebrating during the season of glistening snow and holiday cheer. But that’s actually not my point at all. I must confess that this is actually my favorite time of year, a time where I’d love to be dancing and laughing, and embracing all that is good.
It’s just that moving into the land of the unwell has made it much more difficult for me to ignore the amount of sadness that also often accompanies this time of year. And just as the wise author of Ecclesiastes attests, it’s rarely a time just for mourning or just for celebrating. Most often, it’s a time for both.
And having now had almost nine years to mark the date of my life changing by virtue of a cancer diagnosis, I have realized that acknowledging and making space for the times to mourn actually makes more space for the times to laugh and the times to hope.
As is the case for virtually all the lament psalms as well, the time for lament helps propel us toward a time to hope. Psalm 22, that psalm that begins with such intense sorrow and anguish, ends with words of hope. The psalmist declares that one day, the poor will eat and be satisfied, that the Lord will listen to our cries for help.
One of the gifts we can give each other at this season of light illuminating darkness is to acknowledge and make space for the occasions for lament not only in our own lives but in the lives of others. I worry that many of us feel pressure to only talk about or make room for the happy aspects of the season. But when we acknowledge it’s also a season of lament, I have found, that we can more fully enter into the joyous occasions, because there’s room enough in the season for both.
I have stage IV breast cancer and I blog about it. But I’m not the only one—with the disease or with a blog. Lisa Adams, metastatic breast cancer patient and blogger with a national profile, recently became a touchstone for national debate about the use of social media in publicly chronicling a serious illness. In early January, two journalists, one at the New York Times and one at the Guardian, wrote pieces critical of some of Adams’ treatment choices as well as the way she lets readers into her life with cancer via blogs and tweets. Outrage over Bill and Emma Kellers’ pieces (who happen to be married) was swift and fierce, not just for the critical questions they raise about Adams’ choices but for inaccuracies in important details (like getting the number of Adams’ children wrong, or how long she’d been living with metastatic breast cancer) and in including quotes from private correspondence with Adams without permission, prompting the newspapers’ opinion editors to publish pieces alternately apologizing for and defending the journalists (if you want to read more, here’s one place to start: The Guardian website).
Perhaps the most controversial aspect of Bill Keller’s “Heroic Measures” column is his not-so-subtle suggestion that Adams should consider going more quietly into that dark night rather than aggressively treating the metastasizing cancer. In weighing the alternatives, he contrasts the treatment regiment of Adams to his own father-in-law’s “unplugged” death from cancer in Britain last year. Here Keller is wading into much-larger debates about not just how the U.S. apportions its medical dollars but how and when those of us with advanced-stage cancer (and other really bad conditions) should embrace the inevitability of death. I’m keenly aware of these debates, as they often play out in my own head. When I learn “my” cancer has metastasized from the bones to the liver or the lungs, how much aggressive treatment will I opt for? How are we supposed to decide when enough’s enough?
When I was diagnosed with stage IV cancer, I started preparing to die. Granted, we should all “live like we’re dying” as singer Kris Allen reminds us, but an aggressive diagnosis ups the urgency on doing just that. I went back to teaching even though I could barely stand up because I wanted to be in the classroom one last time. I stopped buying new clothes because I didn’t think I’d have much time to wear them. I insisted on a summer vacation even though my stamina was shaky because I thought that would be the last one I’d take with the family. My husband and I secured burial plots. There didn’t seem to be much time, and I was intentional in my preparations for the end.
Then I went into remission. Having already resigned from my life, I gradually let myself believe that there could be another semester in the classroom, that if I bought new clothes I’d have some time to wear them, that I might get to experience another family vacation. What an amazing turn of events. Thank God, thank the doctors, thank the world for allowing me more time.
I’ve never been a fan of February. In February in Minnesota, winter shows no signs of letting up. The few years I lived in Nashville I was shocked when spring started to stir in February. In Minnesota in February, spring is still years away.
On top of the arctic weather, February ushers in the Christian season of Lent, which as a theologian I strongly approve of. Theoretically. It’s important to pare down, do without, take stock of our sin, and reflect on the suffering of Jesus. But practically speaking, it’s the downer season of the church year. o when Lent comes in the middle of a Minnesota February, I dream of practicing another faith in another state.
The first February after I was diagnosed with stage IV cancer, Ash Wednesday arrived and I couldn’t muster up the courage to go to church. The thought of one of our pastors making the sign of the cross on my forehead and saying, “You are dust and to dust you shall return,” was more than I could handle. Two of my vertebrae had already turned to ashes and I feared the rest of me wasn’t far behind. I needed no additional reminder that death was near.
That February—a good two months after getting the diagnosis—was also the time when the seriousness of my condition began to sink in. It was in February I realized that eighty percent of people who have this type of cancer are dead in five years. It was in February when I entered the classroom again and learned I was too weak to stand up and teach at the same time. It was in February that the cancer-winter-Lent triple threat became almost more than I could bear.
October is officially dedicated to raising awareness of breast cancer. Bright pink athletic gear, pink-tinted yogurt containers, and pink-lit buildings broadcast support for those living with breast cancer and those attempting to cure it. As with any good campaign, there are also catchy slogans accompanying the pinking of our surroundings. “Big or Small, Save Them All” is just one of the ditties designed to get us thinking about a disease that killed an estimated 40,000 persons last year.
Since being diagnosed with breast cancer almost four years ago, I’ve had a complicated relationship with popular ways of framing of the fight against breast cancer. Leaving the critiques of the movement’s pink hew to others* I’m interested in how raising awareness has only just started to include information about the most aggressive forms of breast cancer and the stories that accompany them.
By now most of us know something about what I call the breast cancer drill: You find a lump in your breast; you get a mammogram, you’re told the awful news of having breast cancer; you suffer through the trauma of surgery, chemo, and radiation. Then best case scenario you move into remission.
This familiarity with the breast cancer drill was at the heart of my disorientation with my own breast cancer diagnosis. My back broke—not once, but twice—and a biopsy on my back discovered I had . . . stage IV breast cancer?
I’m a woman with breast cancer. The problem is that my path to diagnosis and treatment bears little resemblance to the breast cancer drill many of us know so well. I found no lump; the mammograms I had revealed no tumor; I had no breast surgery, no chemo that led to loss of hair. What does it mean to have breast cancer in a way that differs so drastically from the dominant breast cancer narrative?