Monday, February 24, 2014

Living Out Loud into the Future with Lisa Adams

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?

Given that he’s an opinion writer, it’s understandable Keller has an opinion about aggressive end-of-life care Americans (most often with health insurance) receive.  At the same time, even though Adams’ blogs and tweets open her up to unsolicited advice, Keller’s critics are right to point out that someone over seventy refusing invasive medical treatment is in a markedly different position than a forty-something mother with three young children who need her.  Responses from the Metastatic Breast Cancer Network and others familiar with the disease point to the Keller pieces as evidence for how misunderstood metastatic breast cancer is.  There are glimpses in the present of a day when metastatic breast cancer will not mean an almost-certain death sentence; for a small but growing number of us that future is now.  And Lisa Adams and the medical professionals who work with her are hoping to treat her into that future.   

But trying to live into that future becomes even more difficult when others continue to assume you’re dying.  The other Keller, Emma, confessed in her article for the Guardian that following Adams’ tweets became a kind of obsession for her.  “Are her tweets a grim equivalent of deathbed selfies?” Keller wonders out loud.  With her cancer metastasizing further in recent months, Adams blogged and tweeted from the hospital, knocked down by grueling treatments. Keller followed every tweet, learning, for example, how difficult it was for Adams to breathe as her lungs filled with fluid. It sounds awful.  It is awful.  And yet, (too) many of us undergo similar treatments for metastatic breast cancer, hoping that the treatments that make us horribly sick may also allow us to live into the future.  As Adams proclaims in her own response to the Kellers, “I will die.  But that day is not today.  That time is not now.”

Why do we “follow” those who get knocked down by the worst life has to offer?  I know from having my own following of family, friends, and people I’ve never met, one reason people do this is to offer words and other forms of support when we need it.  But Keller proposes there’s more going on than just wanting to offer support.  She herself admits embarrassment over her own feeling of voyeurism with respect to tracking some of Adams’ darkest days.  Given some of Keller’s comments, and the fact that she reported on private correspondence without Adams’ consent, we might well agree with her self -assessment.

But I wonder if calling close tracking of others’ suffering voyeurism adequately captures the reason—beyond the desire to be supportive—that we follow those trying to live amid lousy diagnoses.  I sense there’s more going on than an inability to look away when offered windows into another’s pain.  What I see in those who follow people through Caringbridge or blogs or Twitter is a desire to find clues for how they might respond if cancer (or other awfulness) knocks them to their knees.  We search the lives of others in the eye of the storm for indicators of possible ways through the pain.  And while Lisa Adams has cause not to appreciate the comments of all her followers, I imagine that she, like me, has taken solace in the support of her followers who help her live out loud in the future.  Here’s to hoping for more for you, Lisa, and to all of us living with—and blogging about—metastatic breast cancer.   

Thursday, February 13, 2014

Live Like We're Dying

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.

Living with gratitude has been at the top of the life agenda these past five years of finding remission, losing it, then finding it again.  The days, months, and years have been accompanied by unfathomable gifts of grace.  At the same time, the space occupied by a stage IV cancer diagnosis, the fickle status of remission, and ongoing oncology visits and chemo treatments is often a discomforting one.  In a recent New York Times op ed piece, Paul Kalanithi, a young resident neurological surgeon recently diagnosed with metastatic lung cancer, tries to figure out how to live in that space.  “The path forward would seem obvious,” he writes, “if only I knew how many months or years I had left.” 

Even though all of us not on our deathbeds can’t know the hour of our death, we all know we will die.  As Kalanithi points out, however, those of us with metastatic cancer know this acutely.  In his own grappling with how to live in the midst of a devastating diagnosis, this budding surgeon has found wisdom in writer Samuel Beckett’s claim, “I can’t go on.  I’ll go on,” statements that capture the competition between resignation and determination, between despair over receiving a premature death sentence and evidence that death is most likely not tomorrow.  How do we “live like we’re dying” in ways that embrace what is while also hoping for more?

I’ve been told that one day a stage IV breast cancer diagnosis will most often not be a death sentence but rather a transition to living with a chronic condition.  So far, I seem to be living in that future.  The “management” of my condition had a rocky start and has endured several bumps along the way, but overall, I’m living very well with a serious, chronic condition.  How awesome.  Yet I hear from the experts that know of no others doing as well as I’m doing with this condition.  How lousy.  

Being an anomaly makes that discomforting space a bit more uncomfortable.  But I go on, trying to lean as fully as possible in to that space, praying that more who share my diagnosis will occupy the space with me, and hoping that I have more days, months, and years, to understand how to respond to “I can’t go on” with “I’ll go on.”