Tuesday, October 23, 2012

Bad to the Bone: A New Slogan for Breast Cancer Awareness Month

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? 

Come again?

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?

Because the cancer in my breast had metasticized to the bones, “saving the breasts (big or small)” was initially a non-issue.  The disinterest in the cancer in my breast was unnerving for all of us well acquainted with the drill.  I was put on the anti-estrogen drug.  I began two years of monthly treatments of the osteoporosis drug.  I began radiation—not on the breast but on my spine, hip, and pelvis, all places to which the cancer had metasticized.  I had surgery on my back to repair the vertebra destroyed by the cancer.

All the treatment I underwent was for the express purpose of stopping the cancer from destroying more of my bones (or moving into my organs).  And thus far I’ve been incredibly fortunate: the multiple medical interventions worked as they ideally are supposed to and I’ve been in remission for much of the past three years.

But there’s more to this story.  There is no cure for metastatic breast cancer.  Oncologists hope that one day they’ll be able to treat metastatic breast cancer as a chronic condition, like diabetes.  But today the statistics are still grim: according to the May 2012 issue of the journal Nature, even though there’s been “vast improvement” on survival rates for non-metastatic (“local”) breast cancers, the journal reports that survival rates for metastatic breast cancer patients remain “dismal,” with only 22% living more than ten years with the disease.

This is one of the first Octobers when I’ve seen breast cancer awareness reach beyond the more familiar stories (which are, of course, very important) to the much-less-familiar stories of metastatic breast cancer.  At least two local news stations have interviewed women with metastatic breast cancer this month.  In one interview, the women noted how little connection they see between the pink-themed focus on breast cancer and their own journey with the disease. 

I can relate.  The pink makes me think about breasts.  Those of us with metastatic breast cancer are often thinking about our bones (and our organs) rather than our breasts.  Metastatic cancer is “Bad to the Bone.”  In the name of raising more awareness of all forms of breast cancer, perhaps it’s time to add a few new slogans to the agenda.  Then we might see that saving bones is part of the quest to contain breast cancer, too.     

*to cite just two examples of critiques of the pinking of breast cancer awareness, see Barbara Ehrenreich’s searing “Welcome to Cancerland,” or  Hamline University alum and 29-year-old cancer “thriver” Erika Lade’s Huffington Post blog, “Breast CancerAwareness: Why does my Cancer Have a Logo?”

Tuesday, October 16, 2012

A New Vocation

In the few years since my cancer diagnosis, I’ve had more conversations about the sad parts of life than I have in all my years before the diagnosis combined.  Sharing my own story with others, especially in the form of a book, has provided avenues for others to share their own struggles and grief with me.

After reading my book, a friend shared with me some of her struggles with mental illness.  She then asked whether I feel burdened by the frequent conversations about my own—and others’—pain.  While I wish we all had much less sorrow in our lives, I’m keenly aware that’s not the case.  Talking about the tough stuff simply is what life is about these days.  And recently I’ve even come to see it as my new vocation.

In contemporary conversations about vocation, we often talk about finding or choosing a vocation.  We take strength-finder inventories; we envision where we’d like to be in ten years and what we need to do to get there.  Much reflection on vocation in the past, however, has characterized vocation as something given to us, even when we’d prefer to be doing something else.

Truth be told, I’d much rather know about cancer only from the outside.  I’d prefer to talk less about the sad things in life.  But I don’t have a choice but to be on this path.  At the same time, it seems that my training as a theologian and a professor is leading me to work on talking about the tough things in life in ways that might be of help to others.
It’s also common in contemporary conversations about vocation to turn to writer and theologian Frederick Beuchner who talks about vocation as the place where our deep passion meets the world’s deep need.  If I understand my new vocation in these terms, that doesn’t mean I’m passionate about talking cancer in an enthusiastic sort of way.  Rather, if we dig more deeply into the word passion (think Christ’s passion), we realize passion is also intimately connected with pain and suffering.

In my new role as a writer-talker-and-listener about the tough stuff in life, I’m passionate about the deep need we have to figure out how to talk about the most painful parts of life.  And as many people who’ve been through hard times know, intimate familiarity with suffering can cultivate a heightened sensitivity to the pain of others.  Since having cancer I’m more attuned to the struggles in others’ lives.  And on good days, I’m also more willing to ask how someone is really doing, even if I wager the answer might lead to another conversation about the tough stuff.

While I’d happily accept a different vocation, being invited to occupy that space of sadness, grief, and uncertainty with others is often a profound experience.  To sit with another human being and reflect on what we’ve lost, on how life is different since badness came on the scene, on the grace that emerges even in the midst of the awful—can bring consolation and insight.  More than a burden, it’s a privilege to be able to occupy that sacred space with others.  Not long ago I thought I didn’t have enough time left in life to have a vocation at all.  Given the alternative, I’m grateful to have a new vocation and to be doing well enough to try and live it out.

Tuesday, October 9, 2012

Becoming a Fan of Christopher Hitchens

I was never a big fan of Christopher Hitchens’ take on religion.  A self-described antitheist, Hitchens took great pleasure in mocking God, religion, and people of faith.  While there are many valid critiques of religion out there, Hitchens’ attacks seemed designed to get a rise out of his readers rather than to add any new insight to the debate.

Even though I wasn’t a fan of Hitchens’ views on religion, I’ve become a fan of the man.  After he was diagnosed with esophageal cancer in 2010, Hitchens began writing about his life refracted through this new lens.   The cancer did not let up, and he died at the end of last year.  But his words live on, particularly in a posthumously-published book entitled, Mortality, a collection of his Vanity Fair essays on the challenges of “living dyingly” with cancer.

I didn’t find a soft spot for this man simply because we have a stage IV cancer diagnosis in common.  I became a fan of his writing because I think it’s worthwhile to talk about cancer in ways that do more good and less harm.

In his essay entitled “Miss Manners and the Big C,” Hitchens makes clear why more conversations on how to talk about cancer are necessary.  He points to the need for better manners by those whose insensitive comments about life with cancer leave their mark.

Interestingly, though, Hitchens’ lament about manners and cancer talk is not just about what those who don’t have cancer should say to those of us who do.  What’s most compelling about Hitchens’ call for better manners is that he turns a critical lens on himself.

In his soul-searching reflections on his new life, Hitchens clues us into his no-nonsense approach to talking about his condition.  At the same time, he admits to getting upset when others offer no-nonsense responses in return.  Hitchens concludes: “Cancer victimhood contains a permanent temptation to be self-centered and even solipsistic.”

Portraying those of us with cancer as potentially solipsistic is a risky move, even when it’s done by an honest-to-goodness cancer patient.  After all, doesn’t staying alive in the midst of the eye of cancer’s storm require self-centered behavior?

It’s true: living with cancer demands unparalleled focus on the self.  But Hitchens was brave enough to claim what is also the truth: that we cancer patients do not get a pass on the temptation to be overly focused on ourselves.

Ironically, the reason I like Hitchens’ self-critical analysis so much is related to the reason I like religion so much, especially when it’s on its best behavior.  There’s a striking similarity between Hitchens’ assessment of his own behavior and religious insight into our flawed condition: both acknowledge that being turned in upon ourselves is a condition to which we are all subject.

Toward the end of the essay Hitchens calls for the establishment of groundrules for interaction between residents of "Tumortown" and citizens of "Wellville," noting that the rules should impose duties on those of us with cancer as well as upon those who say too much or too little about our cancer condition.

Based on my own recent residency in Tumortown, I’ve realized that none of us knows exactly how to have cancer and none of us knows exactly how to talk about it.  Hitchens is right: more groundrules will help all of us.  Just as importantly, however, I propose we attempt a spirit of grace and forgiveness in conversations between those with cancer and those without, knowing that most of us are still in the midst of trying to get it right.

Even though Christopher Hitchens and I were far apart on the topic of religion, his penchant for talking about the tough stuff in the realm of cancer has helped me think more deeply about manners, grace, and the Big C.  Thanks, Hitch, wherever you are now.

Tuesday, October 2, 2012

A Most Amazing Gift

Almost exactly three years ago I was given a most amazing gift.  On an exquisite fall day, my family and I were lured to a friend’s home and given a quilt sewn together by dozens of friends and family members.  Over the past 3 ½ years, we’ve been overwhelmed by many meaningful gifts bestowed on us in response to my illness.  But this one takes the cake.

The friend who came up with the idea of a quilt told us that back when I was at my sickest, she had a vision of creating a quilt for us.  She considered this vision her marching orders and used the entries on my Caring Bridge site to make contact with our friends and family about participating in making a quilt.  

Mailing fabric, dropping off squares at various locations, even meeting prospective sewers clandestinely in coffee shops, our friend recruited a small army of sewers to help make her vision a reality.

During the summer I moved into remission, sewers sent completed squares back to our friend. A quilting frame went up in her living room, and unbeknownst to us, her family hosted quilting nights where our friends and family gathered to stitch this quilt together.  
On that gorgeous fall day three years ago, our family was rendered speechless by this gift and the deep love radiating from our dear friends and family who had gathered to stitch it together for us. 

After the guests left the quilting party, my friend pulled out her laptop and showed us her file labeled Quilt filled with over a hundred email messages pertaining to the quilt and the party. Even more names appeared of people who had worked on the project but couldn’t make the party. 

The magnitude of this project exceeded my ability to take it in.  That for over half a year people had worked on this gift—and that this friend in particular spent hundreds of hours designing, recruiting, mailing, sewing, and hosting—was beyond comprehension.  What words are up to the task of expressing gratitude for a gift such as this?

When I made another feeble attempt to express my gratitude, my friend brushed it aside saying, “I’ve been blessed through the relationships I’ve developed along the way. This quilt has been a gift for us too.”

I sensed my friend really meant what she said. The atmosphere at the party had been unlike any celebration I’d ever attended; the undercurrent of joy seemed to sweep everyone along with it. The quilt project, it was apparent, had become more than just a gift for us. The loving act of creating the quilt had also given the sewers something in return.

Three years later, the quilt continues to radiate grace in our lives.  Its presence on our bed reminds me daily of how I’ve been draped in the care of others throughout this journey.  The quilt is also insistent in its claim that the demons of the night—anxiety, fear, despair—are ultimately not as powerful as the love and the hope stitched into its fabric.  

Clearly it’s more than just a quilt.  It’s also a tangible sign of the grace that can break through—and sometimes even overpower—the grief that accompanies lousy realities like cancer.  And that’s why it’s a most amazing gift.