On October 17th, the day my Dad would have turned 79, 500 folks came together at Death:OK (Let's Talk About It) - a 10-hour day of programming that I and a hard core corps of volunteers spent two years coaxing into being. There's much to say about this grand event, but to start: some of my very favorite moments were spent in workshops presented by folks I'd recruited.

Kim and Carter, both clients, told their stories in Planning Your Own Memorial: Stories from the Frontlines. Lynda, a client, and Phyllis, and old college friend, shared theirs in Doing It Your Way: Personal Stories of Home Funeral, Green Burial & Remembrance. 

I'd pitched Oregon Public Broadcasting on the incredible content we'd assembled for the event, and they invited me and Lynda into the studio to talk about home funerals and green burial, with Phyllis joining us on tape. Click below for a listen.

See also:

• Phyllis's story of how she gave her husband Mark the green burial he wanted: Somewhere There's Music, How Sweet the Tune
• A short film about the home funeral Lynda Martin-McCormick and her family created for her husband David: Death DIY
• An account of how Kim Wieneke called on her friends to help her plan her own memorial service: A Little Help From Her Friends

The City Council Chambers of a small town in Oregon - Sherwood, to be exact - it's one of the least likely places I've found myself talking about death. But the Sherwood Library shares the public service building with other local government functions, so that's where we gathered: a librarian, a handful of local residents, and a reporter and photographer from the regional suburban newspaper.

I'm one of a team of facilitators recruited by Oregon Humanities for their new statewide conversation program, called "Talking About Dying." My first gig drew more than 30 folks for a wide-ranging discussion at Multnomah County's historic Central Library. I didn't know what to expect at the smaller town venue. When it looked like the two members of the media who'd shown up might be a good third of those in the room, I encouraged them to participate (personal engagement in the discussion is a request I've made of every reporter wanting to cover Death Cafe). 

They declined. Nevertheless, the coverage they provided advanced the idea with others. My facilitation colleague Jenny Sasser led the session that followed this publication of this article - over 30 people showed up to talk about dying. I look forward to meeting folks in Tigard on November 17th and in Canby on January 12th.

Check out the fantastic resource list put together by Oregon Humanities with facilitators' input!

I'm pleased to share this excellent account The Oregonian's Jamie Hale wrote of his experience attending a PDX Death Cafe. 

Let's talk about death: PDX Death Café wants to change the conversation around dying
by Jamie Hale, April 6, 2015

I can vaguely remember the church where his body lay, hidden away in a casket by the altar. I don't remember it being a big ceremony, just a gathering of people who knew him, some standing stoically, others wiping tears from their cheeks. My grandfather was 79 when he died of lung cancer. I was 7.

I hardly knew the man. He lived in Texas and we lived in Oregon. I met him maybe twice in my life, but still his death hit me hard. He was gone. Forever. I never really met him and I never really would. It was all so devastatingly permanent. My childhood mind could hardly comprehend it, but I mourned just the same, a hollow sorrow boring into my chest.

That's the power death holds. It slips the deceased swiftly away, leaving a cruel chill over the survivors, rightly robbing us of our sense of immortality. It's a reminder that one day, perhaps without warning, we too will be lifeless in that casket, and our grandchildren, who we may hardly know, will sob uncontrollably at the back of the room too.

We don't like to talk about the end of our lives, for fear that it might stop us from actually living them. But there's a growing movement in the country that sees it another way, a group that finds a sort of freedom in the acceptance of finality. Here, in Portland, they gather for tea and conversation, gatherings they call the PDX Death Café.

Let's Talk About Death

I decided to attend the most recent café on the Saturday before Easter, and despite the holiday weekend, a crowd of more than 35 showed up, including nearly a dozen people to facilitate the conversations. We didn't meet in an actual café (although organizers told me they often do) instead congregating at The Dougy Center in southeast Portland, a community organization that helps kids and families grieve.

But these events aren't meant to be grief counseling, Death Café organizer Holly Pruett told me before it began. They're an opportunity to talk openly about death without stigma, ideology or conflict, gaining fresh perspectives and growing in the process. Everyone agrees to be respectful and pledges confidentiality -- what happens in the group stays in the group.

That last part put me, a journalist covering the event, in an uncomfortable spot. Before I go on, I'd like to note that everybody in my group of seven gave permission to share our experience, so long as I don't use names or obvious descriptors. It's not like there were any secrets being told, but as it turns out, a discussion about death can get very personal very fast.

Our facilitator, a kind woman with a calm demeanor, asked us each to share a death that was particularly meaningful. As we went around the table we heard stories of friends, mothers, fathers, brothers, husbands and spiritual leaders. The stories of the deaths were powerful, but they were just jumping off points, meant to take us into uncharted waters within ourselves and with each other.

One older woman explained the feeling she had after her brother died. It was like a dark hole in her chest, she said, but in a moment she felt a sense of freedom for her brother, and in turn freedom for herself.

Across the table a mother of four explained how the loss of her husband tore her apart. Her family suffered greatly, but the real shock came when her extended family and friends turned away, she said. They didn't know what to say, and quite frankly, all the grieving made them uncomfortable.

There's a stigma around death, a man in the group suggested. There's this notion that dying is a failure.

But, of course, we all die, another piped up. We all fail eventually. Why not re-frame our thinking to see death as inevitable, and actually prepare ourselves and our families for the big day?

Fighting the Fear of Dying

It's a tricky subject. As our group discussed, not everybody wants to talk about death. One woman said she tried to talk to her father about it as he was sick in the hospital, but he refused. He just wasn't ready, he told her. He didn't want to think about it.

You have to respect that decision, but these Death Cafés (nearly 2,000 have taken place, all around the world) were founded with the goal of creating a less "death phobic world," Pruett told me.

"People just find it so useful, (hearing) what's on other people's minds about death and hearing other perspectives," she said. "We should bring discussion about death into the public square."

Two years ago she and her fellow organizers did just that, bringing the international Death Café model to Portland, immediately attracting big crowds. At the very first event 100 people showed up, a number that has remained more or less consistent ever since.

The attraction has left them hopeful that people are ready to be open about death, and can be vulnerable with each other about such a sensitive subject. Still, Pruett said there's a long way to go before discussion about death and grief is normalized in our larger society.

It's strange that something so common can seem so uncomfortable. Death is an experience we all share, yet we're hesitant to talk to even our own parents about it. Many in our group admitted that it was easier talking with strangers than with our families. It's understandably a sad subject, but what if talking about it freed us from the sadness?

I asked Pruett the maddeningly simple question, the one that stops us from having these kinds of conversations all the time: Why is it important that we talk about death? She smiled, and replied without missing a beat. "Because generally we don't."

The PDX Death Cafés are open to all who are interested. The next events will be on June 7 and June 16. Go to the group's Facebook page or email PDXDeathCafe@gmail.com for more information.

This week, while my friend Marcy Westerling lay in a California hospital recovering from her latest foray to the far frontiers of medical research, I received a package in the mail containing two signed copies of a book that features Marcy's Yes Magazine essay on Livingly Dying. 

At Marcy's request I too submitted an essay for the anthology, I Am With You, Love Letters to Cancer Patients. Reading my piece now, on advocating for a friend, I think it contains plenty of good advice which I hope will empower others to step up. 

But it also reminds me of how much doing helps me cope with the anxiety, confusion, and grief of having a dear friend receive her death sentence. Being with that reality, being a friend first and foremost, is often much harder than executing a list of practical tasks. 

As a coda to the essay I was asked for a short list of "what gets me through the angst of cancer." I wrote:

1. Being active: doing what I can to ease the suffering of those living with cancer.
2. Remembering well: honoring the memory and legacy of those who’ve died, keeping them alive in the world through valuing all that their life and death nourished.
3. Getting ready: learning everything I can about living with and dying of cancer, and how to grieve the sickness and death of loved ones, to become more skillful at living with a heart broken open by it all.

Becoming more skillful at living with a heart broken open by it all - that is a work in progress.

by Randall Barton
Published in Reed Magazine Volume 93, No. 4: December 2014

If you knew your death would come when you finished reading this article, you might greet it like Anne Boleyn at the block: accept your fate with courage and dignity, pay the executioner, and die with one stroke of the blade. You might also read very slowly.

The truth is that until it’s imminent, few of us are willing to contemplate death—and even fewer to talk about it. 

Holly Pruett has taken the subject out of the closet and made it the centerpiece at her PDX Death Cafe, where people gather to consume sugary desserts and discuss shuffling off the mortal coil.

In a Portland park, strangers gather, six to a table, to experience their first Death Cafe. A woman shares that she started thinking a lot about death after being diagnosed with cancer. Another recounts a wake where children played near the open casket of their kindly grandfather. A man relives the fiery, ghoulish nightmares he had after viewing his grandfather’s corpse when he was a child.

It may sound like a scene from the film Harold and Maude, but the notion of folks coming together to discuss death gained steam 10 years ago when Swiss sociologist Bernard Crettaz began hosting what he called the Café Mortel. Attendees talked about the nature of death, and how our fear of it informs the way we live. In an age of tweets and text messages, these conversations proved engagingly authentic. Frothy “I am here” postings on social media and sound-bite news stories felt mundane and fleeting compared to something so profound and final.

In 2011, Londoner Jon Underwood established the Death Cafe franchise, providing open forums for talking about death while eating cake. (The cake is supposed to help people steady their nerves.) The not-for-profit events have no structure, themes, or guest speakers, and are not intended to provide information or grief counseling.

Bucking the conventional wisdom that people don’t wish to talk about death, Underwood discovered legions eager to discuss one of life’s crowning experiences. The declining influence of organized religion in people’s lives may contribute to the Death Cafe’s rapid growth. There are now more than 900 Death Cafes in 19 countries. But Underwood suggests that another factor spurring interest is the baby boomer generation coming to the top of life’s escalator.

“That’s the generation that has had the best services throughout their lives,” he says, “and I don’t think they’ll settle for second-class services when they come to the end of their lives.”

Holly Pruett radiates the clear-eyed conviction of a cleric. Three of her female relatives are Presbyterian ministers, and though she operates outside of that paradigm, she often describes her work as being like a secular chaplain. As a “life-cycle celebrant,” she weaves her client’s stories, beliefs, and traditions into ceremonies that commemorate major life events.

“Celebrations connect us to each other, to our community, and to the meaning in our life, which we can often skate behind,” Holly says. “When it is done well, ceremony allows us to bring the sacred into our lives—whether or not you use that word.”

Because humanity continues to cross the same thresholds, acknowledging these passages gets people outside their own story to connect both with those who have come before and those that will follow. Nonetheless, Holly says that the ways we approach funerals, births, marriages, and deaths have become formulaic and overly commercial.

“The needs are timeless,” she says, “but the conventional ways they are being met have become anachronistic and stale.”

Using skills honed as a student at Reed, Holly uncovers narrative needing to be strengthened, transformed, released, witnessed, remembered, affirmed, grieved, or memorialized. She suggests a path of inquiry to get there, and often officiates at the resulting ceremony.

Attracted to Reed for its academic rigor and counterculture reputation, she moved from New Haven, Connecticut, taking to Portland “like a duck takes to water.” She chose history as her major, and wrote her thesis on the 1905 Lewis & Clark Centennial Exposition.

During her senior year she volunteered at the Portland Women’s Crisis Line, and after graduating took a job at a women’s shelter. Facilitating peer-led sessions, she witnessed the power that comes from hearing someone else’s story.

“I wasn’t there to solve any problems or provide answers,” she says. “But I could hold up a mirror and reflect back images of the women as capable, worthy, and intelligent that were different from the reflection that the abuse had shown them.”

At 25 she took a break and traveled through Europe and Southeast Asia, during which time she came out as a lesbian. By the time she returned to Oregon the state was embroiled in a battle over Measure 8. Sponsored by the Oregon Citizens Alliance, the 1988 initiative repealed Governor Neil Goldschmidt’s executive order banning discrimination based on sexual orientation in the executive branch of state government. Holly joined in the fight, and though voters approved the measure, she got an education in how the advocacy process works at the ballot.

Entering the world of Salem politics, she took a job as a lobbyist for the Women’s Rights Coalition, followed by a stint as director of the Oregon Coalition against Domestic and Sexual Violence, a statewide coalition of women’s shelters and rape hotlines. For nearly 20 years she worked as a leader in the nonprofit sector and behind the scenes in advocacy campaigns. Then, in her late thirties, her father was diagnosed with cancer.

“The theme in my life had been losing my father,” Holly says. “First it was his work, then a four-year affair culminating in a 6,000-mile relocation just six days after my parents’ divorce. He never came back.”

Holly  helped care for her father and lived with him the last summer of his life. But when he died 18 months after his diagnosis, her stepmother was too exhausted to go through the ordeal of a funeral. She had the body cremated and sent Holly some of his ashes in a yogurt container.

“I had to figure out for myself some kind of ritual that would help me,” Holly says. “I realized later it was less a memorial for him and more a rite of passage for myself, fully becoming a fatherless daughter. That’s what really set me on the path.”

A door had closed, but another opened and Holly stepped forward on a path of new professional engagement.

“I was raised to get to the level of highest impact,” she says. “Why be a teacher when you can be a principal? I had developed the strategy that could bring 5,000 people to the state capitol or affect the biennial budget, but I wanted to be more personally and directly involved with the important things in people’s lives.”

A friend shared a magazine story about a green burial preserve in South Carolina and suggested they bring the idea to Portland.

In natural burial, human remains are interred without being embalmed or entombed in a vault or liner. Placed in a shroud or biodegradable casket, the body simply decomposes into the earth.

In America, embalming gained currency during the Civil War because it enabled the interment of dead soldiers back home. Tens of thousands viewed the fallen president as Abraham Lincoln’s funeral train progressed from Washington, D.C., to Springfield, Illinois. In more than a dozen cities people filed past his casket and marveled at the preservation of the corpse, establishing a precedent for creating a focal point for the funeral.

Holly was working with Portland’s River View Cemetery to offer natural burials—concurrently taking instruction in funeral celebrancy—when she first heard of the Death Cafe. Approaching several other Portland practitioners, she suggested they give it a try.

Why don’t we talk about death and dying?

We live in a death-phobic culture where the end of life is seen as a failure rather than an achievement, Holly answers. Everyone recognizes the difficulty of giving birth and being born, but few honor the work it takes to die. In one century our society has progressed from families laying out their dead in the parlor to what Kenneth Hillman, professor of intensive care at the University of New South Wales, Australia, calls “ICU conveyor belt death . . . where even doctors don’t feel comfortable talking about death and dying.” Studies show that almost half of the cost of health care is spent in the last six months of life.

“We want people to be medicated and shunted off so that we don’t see the work that it takes to die,” Holly says. “We don’t have the opportunity to learn from it.”

PDX Death Cafe has drawn attention for the large numbers it attracts. It isn’t unusual for Holly to receive 100 requests for an event that can accommodate 80. In other parts of the country, events typically draw between 15 and 25 people.

Jeremy Appleton ’88 attended an alumni reunions Death Cafe hosted by Holly. He points out that some Buddhist sects contemplate death as a profound spiritual practice. The more we talk about and reflect on death, the less we are afraid of it, Jeremy says, but he finds this easier to do in the company of others. Listening to the myriad perspectives at a Death Cafe can induce a taboo-breaking exhilaration.

“As long as I fear death, I am not living life to its fullest,” Jeremy says. “By attending a Death Cafe, actively contemplating death, and making its reality more fully conscious, I endeavor to overcome my fear.”

Holly likens the experience to chatting with a stranger during a layover at an airport. Intimacy is easy when you don’t have to worry about any consequences.

“From my experience, I find it real and intimate that people are able to connect around this common humanity,” Holly says. “It’s not necessary to have expectations about that going further.”

“We live in an amnesiac culture with very little connection to our lineage and what came before us,” Holly says. “There’s no sense that there’s a future to be tended by making our stories available so that others might study them. Our stories show we matter and made an impact—that there was a space we occupied and the shape of that space can still be acknowledged.”

At a PDX Death Cafe picnic, people were invited to come early to complete a checklist of activities preparing them for death. They were asked to think about how they would like to die, in what surroundings, and with which people present. One man stalls in his progress and a facilitator approaches to ask if she can help.

“I’m still not certain that I’ll ever come face-to-face with the Grim Reaper,” he jests.

“I’ll give you better than even odds that you will,” she smiles.

Within 24 hours in June I received two inquiries that felt too connected to be coincidental. Lynda Martin-McCormick was seeking support to create a home funeral for her husband, David. 

Lee Emmert, a filmmaker, was seeking subjects for a short student production. "I’ve long held the view that the way we handle death and burial in our culture is…bizarre," Lee said. "I think it’s important to open up the issue by considering other, more ‘natural’ options; including alternative processes, home funerals and home burials." 

I deliberated with my colleague Nancy Ward. The two of us, both engaged to support Lynda's family, had referred Lee to a number of potential interview subjects who could recount their past experiences with reclaiming death care and bereavement rituals. But here was a family going through it in real time. Would it burden them to consider this request, to allow the student film crew from the University of Oregon working under Lee's supervision into their home during this tender time? Or would it present another facet of David's legacy, an expression of their deeply held values and beliefs, to offer their experience to the broader world?

We concluded that it wasn't our decision to make. We presented the opportunity to Lynda. She said yes. The result of this family's open-heartedness, the film crew's sensitivity, and Nancy's eloquence is nothing less than exquisite. 

Please take a look (it's under 5 minutes) and share with those who might be interested in this intimate view of a family fully empowered in their encounter with death.

Who knew conversations about death could be so life-affirming? Since I organized the first PDX Death Cafe last spring my world has expanded to include scores of open-hearted, broken-hearted, life-embracing, death-accepting, courageous caring people yearning to connect through the isolation and silence typically surrounding this topic.

I've organized or supported 14 more Cafes in the 14 months since that first 60 person gathering at the Bijou Cafe. They've taken place at restaurants, churches, community centers, my Reed College reunion, and a co-housing community.

And just last Sunday we held our first "mobile Death Cafe" - a road trip to the White Eagle Memorial Preserve, a natural burial ground two-and-a-half hours from Portland. 
On the drive up and back our carpools discussed questions such as: 

• What do you know about your ancestors? 
• What were the burial practices in your family and how connected to them were you, growing up? 
• What associations do you have with cemeteries? 
• What do you want to have happen to your body when you die?

And now that more than 500 people have engaged with our local Death Cafe scene, the media is starting to pay attention. Last week Peter Korn of the Portland Tribune wrote an article with the wonderful title, "O Death, spare me til we talk about it."

While there were a few misquotes (I didn't say Oregonians are "notoriously cheap" and I don't call myself a "death celebrant"), Peter did a great job of covering some of the diverse aspects of the growing movement that's beginning to normalize death in our culture. He retold the story of one of "Green Reaper" Elizabeth Fournier's home burials that I'd featured on my blog and included photos I provided of myself trying out a cremation casket and of my friend Mark, shrouded in the back of a 1962 Chevy Suburban, headed for a green burial in his family's pioneer cemetery.

They also took this amazing photo of my friend and sister home funeral guide Nancy Ward, which graced the front page of the paper for the five days it was on the newsstands.

The Tribune article seems to have opened the floodgates. Among other media inquiries came an invitation to discuss Death Cafes on Oregon Public Broadcasting's Think Out Loud. Click the image if you'd like to hear the interview, which generated nearly 50 requests to join our notification list in just the first few hours after it aired. Among the comments coming in: "Glad I found you!" and "Thank you for getting this topic out into public. Much needed. I am a social worker who has seem too many 'bad' deaths occur in hospitals."

Next up, courtesy of some of PDX Death Cafe's creative facilitators, an August Death Picnic. I love this town!

My Friend Marcy Has Cancer. I Don’t (Yet).

I.

As the crowd of thousands marched downtown to the site of the Occupy Portland encampment, I left to run an errand. I’d been holding a handmade cardboard sign: “My friend Marcy is WAITLISTED FOR CHEMO – Thanks, Wall Street!”  Many of the people reacting to my sign – whether supportive or averse – thought I was the one waiting for chemo. Even the AP photographer who snapped the picture of my sign that ended up on Internet sites around the world asked, “Is that about you?”

They thought I was the one with cancer. In the coming days, I began to wonder.           

An hour after I left the rally, my belly began to feel like an air pump was inflating a basketball inside me. And I grew cold, so cold, despite my wool socks and heavy Guatemalan wool sweater. My teeth clacked and chattered. By the time I got home from my errands I had to unbutton the jeans that had required a tighter belt notch only that morning.

I forced my stiff, aching muscles up the stairs to my house and cocooned myself in a wool blanket in front of our fireplace. When the wracking chills still wouldn’t subside, my partner Amber found the thermometer. We were stunned when it registered 102.7 degrees. Must be broken. She took her own temperature – normal.

It was about 7:00 p.m. when I reached my doctor, who found it very odd: high fever and severe bloating, but no nausea, vomiting, or diarrhea, which you’d expect with food poisoning or a flu. We agreed that I’d try Tylenol and Gatorade and go to the ER if it got worse.

I woke up in the morning without a fever. But the bloating – I was still so unbearably full I found the idea of eating preposterous. I headed in to see my doctor. They took an abdominal X-ray and sent me home. Once they viewed the film, they wanted an ultrasound. I drove out in Friday afternoon rush hour having drunk the requisite 32 ounces of water – four tall glasses of liquid on top of the basketball in my belly. I was in agony.

I figured I ouldn’t get the results until Monday, but my doctor called and left a message around 6:00 p.m. It wasn’t a reassuring “all clear.” His voice sounded concerned. He told me to call him on Monday.

II.

Marcy’s unexpected diagnosis of Stage IV ovarian cancer had ripped the security blanket off our cozy community. In her early 50s, the poster child for effortless exercise and wholesome diet, Marcy exemplified clean country living. I had barely paused to admit my own emotional response to the pronouncement of her terminal disease. I had swung into action, attempting to impose order on this chaos by taking notes at her doctor’s appointments, organizing brigades of helpers, setting up communications systems.

The Monday morning after my ultrasound, I drove to Marcy’s house to accompany her and her husband, Mike, to see her surgeon, a highly respected gynecological oncologist on whom she had pinned her hopes.

During Marcy’s diagnosis 18 months earlier, Dr. C had gone in through her belly button to remove the small amounts of disease in her abdomen – debulking, they call it – but the cancer had already spread to her chest. Although the surgery and subsequent chemo had produced a blessed remission, her cancer holiday was over.  The disease was clearly on the move once again. Marcy’s meeting with her medical oncologist had left her in despair. She wanted the surgeon to offer something more aggressive, to deliver some hope through scalpel and sutures.

Marcy wore one of her trademark loose skirts. Despite her willowy dancer’s frame she had always favored prairie skirts that allowed her unrestricted movement (and she was constantly in motion). Just before her diagnosis, she had shocked all of her friends by favoring chic new slim corduroy jeans. But the bloating that accompanied her chemo had become, in cancer-speak, her “new normal,” and now it was back to skirts. I was wearing a loose skirt that day, too, to ease the bloat in my own belly. And to hide it.

Over the weekend I’d received an email from one of the national ovarian cancer listservs I had subscribed to, promoting the checklist of early detection symptoms we all need to internalize, like the monthly breast self-exam we were trained to do in the early days of the pink-ribbon movement:

Symptoms of Ovarian Cancer

• Bloating
• Pelvic or abdominal pain
• Difficulty eating or feeling full quickly
• Urinary symptoms (urgency or frequency)
  

I said nothing of my weekend worries to Marcy and Mike. An extrovert, I’m used to sharing (perhaps over-sharing) the details of my daily life. But not emotions – especially fears, especially existential fears of the sort that if spoken you imagine might obliterate you through their very utterance. Fears like: could two friends end up with the same supposedly rare cancer? Fears like: am I counting on my friend’s cancer to somehow provide me with immunity? Fears like: am I going to worry myself into getting cancer if I don’t already have it?

I was happy to stuff my own unknowns into the glove compartment for the morning; I preferred the immediacy of their fears to my own. I clamped down the impulse to distract us all with small talk or spiritual-silver-lining reassurances. We drove to the appointment in shared tense silence.

Marcy’s meeting with the surgeon delivered further devastation: he had nothing in his bag of tricks to help her. She fled the claustrophobic confines of the consultation room as soon as he left. I waited to get the paperwork and found Marcy and Mike in the parking lot. If I’d been unsure about conversation on the way there, I knew without a doubt there was nothing I could say now. Marcy was in full internal lockdown, desperate to be out of the car and back in her home doing the touchstone rituals she had devised to help her tolerate the intolerable.

As I pulled into the driveway she opened the door, “Sorry… rude…by myself.” She fled, with Mike not far behind her. I sat in my car getting her records release documents in order and offered a few inadequate words to Mike when he reemerged to fetch the documents. Then I pulled around the corner and called my doctor, expecting to hear reassurance in my ultrasound reading. Instead he told me there was a mass over my left ovary. He wanted an MRI to provide more detail. But first I should get to my gynecologist for an exam.

III.

Cancer World. It’s how writer Steven Shapin describes our modern existence in his review of the book “The Emperor of All Maladies: A Biography of Cancer” by physician Siddartha Mukherjee. Mukherjee calls cancer “the quintessential product of modernity.” Modern advancements mean more of us have cancer. We now outlive the diseases that killed our forebears before they had the chance to get the Big C. And the toxicity of our environment surely breeds more malignancy. How could it be coincidence that my father and his sister’s husband both died young of the same rare brain cancer, having shared no genetic link, only mutual employment in the family’s fuel tank cleaning business during my dad’s summer breaks from college and medical school?

Shapin, in The New Yorker (Nov. 8, 2010), argues that the modern impact of cancer goes beyond those who have the disease. He writes that historically, “The agonizing manner of cancer death was dreaded, but that fear was not centrally situated in the public mind—as it now is.” Shapin describes “two new kinds of beings in the modern cancer world.” One is the lucky patient who is now able to manage her once-fatal cancer as a chronic illness with miracle drugs like Gleevac. But Cancer World is also inhabited by the rest of us who are waiting and watching, “legions of the screened and the tested, who become more and more aware of the dangers battering away at their cells from the external environment and lurking inside, encoded in their genes.”

Just a month before my high fever and basketball belly, a surgeon excised a bad mole from my right tricep. The cells weren’t cancerous, but apparently that’s where they were headed. The mole is gone now, clean to the margins, but even in its absence, it increases my chances of developing a melanoma. So does the fact that my dad had a melanoma (separate from his brain cancer). And that my mom had another form of skin cancer, now known to be predictive of increased risk of the deadliest kind. My annual preventive visits to the dermatologist are now on a six-month schedule.

I’m a bit of an early detection nut. I’m not a hypochondriac (am I?); I don’t spend my time imagining myself filled with disease. But I don’t hesitate to call the doctor when I’m not sure what’s going on in my body. And I do every test they suggest.

I’m the daughter of a doctor, a man who knew he wanted to be a doctor as a young boy despite neither parent having graduated from high school. “He never went through the I-wanna-be-a-fireman-or-cowboy phase like the other little boys,” his older sister told me. “He just wanted to be a doctor.”

Thus I was born into my faith in the medical system. Not a blind faith: I believe that if you tell the doctor what’s going on, he or she will work with you to figure it out and will try to make you well or keep you safe. I have a strong sense of entitlement, being raised the daughter of a doctor, white and well-educated. They work for me, these doctors and diagnosticians. If I have questions, they will answer them.

And so I’ve been thoroughly probed and scanned and dissected. A lump removed from each breast in a procedure that strapped me to a narrow table, my arms pinned out to either side, crucifixion-style. A colonoscopy in my mid-40s. Suspicious moles carved out and shipped to the lab. X-rays, a CT scan, an MRI, and a PET scan to follow a nodule in my lung (nodule: another word for tumor, but writing tumor sounds melodramatic given its eventual disappearance).

And four years earlier I had been diagnosed with a bumper crop of uterine fibroids – inside my uterus; hanging from the outer wall on a stalk like a banana; embedded in the wall of my womb. Because I never had the heavy bleeding or cramping that plagues many women with such growths, the obvious solution, hysterectomy, seemed like overkill to me (fibroids are the leading cause of hysterectomy in the United States). But the bulk of my fibroids, equal to a six-month pregnancy, became tiresome. I felt obstructed from within when I did certain yoga poses, when I bent forward on my bicycle. My gynecologist warned of bowel and bladder difficulties; my chiropractor thought my breathing could be impaired and my skeletal system skewed.

I researched my options and opted for an embolization procedure to reduce the bulk without surgery. A radiologist inserted a catheter through my femoral artery and propelled microscopic pellets through it to block the blood flow from reaching the fibroids. I pictured them withering on the vine. A year later, my gynecologist reported with some amazement – she’d been a skeptic – that they had reduced in size by 50 percent, the optimal result expected from the procedure. Since then, I’d thought little about them, except during my annual pelvic exam as my gynecologist continued to marvel about the fibroids’ reduced dimensions.

IV.

The day after I accompanied Marcy on her futile pilgrimage to her cancer surgeon, I lay on my gynecologist’s exam table. She asked the question that seemed to solve the mystery of what had happened five days earlier.

“Did it feel like what you experienced when you had your embolization?” Yes, I realized, it was exactly like that. I don‘t know why it hadn’t occurred to me sooner. The procedure had involved an overnight stay in the hospital to control the high fever and severe pain that accompanies the death of the fibroid tissue when its blood supply is blocked. Now my gynecologist studied the original MRI that had guided the embolization and felt confident that it was consistent with the ultrasound that had alarmed the radiologist and my primary care physician. She would send both scans back to the radiologist to be sure.

It made sense to me now: some of the remaining fibroid tissue had gone into a death spiral. As it died – became necrotic, to get technical – the sanitation department kicked in. Fire up the incinerator (hello, 102.7 fever) and bring in the scrubbing bubbles of inflammation.

Still, I was relieved to get the call from my gynecologist three weeks later confirming that the radiologist had finally issued the all-clear. For now, anyway. The mass that had rung the alarm bell appeared consistent with the early pictures of the fibroids. But as with my dermatologist, my monitoring interval is now at the half-yearly rather than annual mark.

V.

My friend Marcy has cancer. I don’t. Yet. I belong to that tribe born of modern medical diagnostics: the precancerous. The Worried Well.

Six months after my belly bloat episode, on the eve of Marcy’s 53rd birthday and the second anniversary of her admittance to Cancer World, I joined her and three of her closest friends for a concert by N.E.D.  “N.E.D. is cancer talk,” Marcy explained in her email invitation. “It’s what we all want to hear after a CT scan – that that we are No Evidence of Disease.” By definition, Stage IV cancer is considered incurable, so the women in Marcy’s cancer network strive instead to “dance with N.E.D”.

Made up of six full-time women’s cancer doctors from around the country, N.E.D.’s slogan is, “Breast cancer has a ribbon – but gynecological cancer has a rock band!” The theater buzzed with snappy women dressed for a party. The band started playing – original hard rock ballads belted out by the lone female doc, a hyper-athletic cross between Natalie Merchant and Janis Joplin – songs of love and heartbreak for the ovarian and uterine cancer patients whose disease inspires a rock band but very little funding for research.

They brandished their guitars and drums and microphones and filled our ears with the beat of the human drama – the full catastrophe as Zorba the Greek called it. Marcy and her three younger pals hit the dance floor and threw themselves into it, giddy, gossiping, mugging for photos. I couldn’t quite go there. My mind was busy worrying, calculating how I could get Marcy a doctor like one of those up there on the stage, a rock star doctor who would feel as passionately about saving her as I did. And my heart was stuck on the story she and a support-group friend had told us before the concert started. A year before when N.E.D. had come through town, the youngest member of their ovarian cancer group had shown up and danced her ass off. She’d been on her feet the whole show, having the time of her life. And then she’d gone home and died – that same night.

Anything can happen at any time. Watching all my risk factors – submitting to the twice-yearly exams and all the scans and probes, keeping my body strong, and eating as healthfully as I can – provides absolutely no guarantee that I won’t get cancer or any other illness. Maybe a serious illness isn’t even in my cards. I could get struck by a car and killed as I ride my bike to Marcy’s house.

I reside in what Shapin calls “the risk-factor world [which] holds out hope for avoiding cancer while recruiting masses of us into the anxious state of the ‘precancerous.’” The insurance companies know that’s my address, too. Because I’ve done all the diagnostic tests recommended to me, my only option for individual coverage, pre-Obamacare, was through the state high-risk pool.

My friend Marcy is dying. I’m dying too. We all are. She knows what’s going to be on her death certificate. I don’t. The lumps in my breasts, the moles, the fibroids, the solitary pulmonary nodule – they’re all benign, every one of them.  So far.

During the episode of mysterious high fever and miserable cramping and the escalation of doctors’ concerns, I wasn’t afraid that I was going to die. I’m too good of a rational risk-calculator for that.

My fears reside at a deeper level. Am I big enough, small enough, brave enough, smart enough to proceed with open heart and open eyes through a world that gives Marcy cancer and me just a small dose of necrotic tissue? What sense can I make of a world that gives and takes away so randomly, that offers such exquisite beauty and love and joy and deals out such indiscriminate suffering? Can I make peace with a world that offers certainty, ultimately, about only one thing: my death, and the death of everyone I love?

Questions, I know, no MD or MRI can resolve.