Sarah’s dying time came in late summer of 2012. She had endured 5 years of cancer treatment for Leukemia. These treatments never brought a cure but they gave her time. She embraced this time with an ever-widening heart that brought a fullness of living that was a gift to live alongside. Her willingness to live deeply and honestly within her experience of suffering gave her more life, not less. Intimacy with what is gave way to the many moments of brilliancy that touched everyone close to her. Living life through the lens of its end reveals a truer sense of preciousness than anything else I have experienced.

Sarah and I had many conversations about death in those five years. They were never easy conversations. There were times when we fell to the ground in sorrow knowing we would likely have to say our goodbyes. Meeting this sorrow together in the open offered a kind of tenderness and love that was so alive and remains powerfully with me now. This intimacy with death allowed us to treasure the simple moments that life offers. Morning tea time on the couch by the woodstove often felt like a feast. The sweetness of time, the warmth of tea and fire and the chance to honor together a new day were gifts and we knew it. Living for a time in this knowing illumines life as the gift it is.

When our goodbye time came in late summer two years ago we savored each moment and made sure to take our time with it. We acknowledged together our last time going to the movies with our kids. Our final outing together was a visit to the green cemetery where Sarah would be buried. We wandered the fields together and she told me she wanted to be buried in the open part of the field because she loved the open. We took time there to sit and read Mary Oliver poems together and choose two that would be read at her memorial service. This slow and deliberate goodbye dance broke my heart wide open. In so doing, it offered me a way to hold all that was to come. 

To love what will not last is food for the soul because it is how it is. Everything I see from my chair here by my garden tells me this is how it is. Next year’s sunflowers will not be the same ones that are here now. The soil of life needs the dying in order to continue nourishing life. The sorrowing heart needs the mysterious force of grief to keep itself alive. We live in a culture that tells us otherwise. That tells us to deny death and skip as quickly as possible over grief. Sarah’s dying time was a gift just as her life was to all who knew her. I thank her every day for teaching me how big love can be and how precious this human life is.

In his forthcoming book Die Wise, Stephen Jenkinson writes, "They say that war's first casualty is the truth. It certainly seems to be the first casualty of the war on cancer." Jenkinson critiques our endemic resistance to "using a language for dying where the truth of the dying is in the language. We traffic in euphemism instead, as if the dying can survive the euphemizing." 

My friend Marcy Westerling has always been a truth-teller. Her blog, Livingly Dying, keeps the fact of her dying front and center, in the midst of her daily embrace of the life she loves. Thousands of readers around the world love her for it.

This month Yes Magazine published an essay by Marcy, "What I Learned About Living From Dying of Cancer." I offer this small taste of her piece with confidence that you will want to click below to read more, and in the hopes that you will share widely.

I encourage you to subscribe to Marcy's blog.
For more on my journey with Marcy, My Friend Marcy Has Cancer. I Don't (Yet). 

"Have you lost your mind?!" That's what Debra Gordon Zaslow's cousin said when Debra brought her cantankerous 103 year-old grandmother home.

Two different contacts from the PDX Death Cafe community alerted me to Debra's story, Bringing Bubbe Home: A Memoir of Letting Go Though Love and Death.

If I weren't leaving town for another sojourn in Nature's arms, I would definitely attend one of Zaslow's Portland readings: 

• Tuesday, July 29, at 7:30 pm at St Mark Presbyterian Church (9750 SW Terwilliger Blvd) 
• Thursday, July 31, at 7:00 pm at Annie Blooms bookstore (7834 SW Capitol Highway).

As you'll see in the clip below, Debra is a professional story-teller. The book promises a riveting account of "volatile caregivers, hormonal teenagers, queen-sized diapers and shadows of the past" in which "the two of them sit soul-to soul in moments of stark tenderness."

As Amber and I face her father's aging (something I was spared by my own father dying young and healthy), I feel passionately that we need stories like this one...

"... the choice to bring death into the home with family, caregivers, and all the ramifications. Zaslow reveals how her grandmother’s shedding of old layers during the dying process created a new bond between them, and how the surfacing of family stories allowed her to see her life in a new context."

The reading, book signing and refreshments are free and open to the public. If you go - or pick up the book, or catch a reading in your own town - tell me what you think.

When her beloved mother Phyllis T. Zeff died on Christmas Eve of 1994 after a 15-month battle with cervical cancer, Shae Uisna was “nearly destroyed. If I could have willed myself to stop existing,” Shae recalls, “I would have.” Now Shae offers comfort and community to other women who are similarly bereaved through her annual Motherless Mother's Day Celebration.

Mother's Day is a time to honor our Mothers, but with this comes the assumption that our Mothers are alive and well. What if your Mother has already passed away?

Shae welcomes all to attend, but has created the experience for those who have suffered loss, specifically of a Mother, Sister, Aunt, Grandmother, Cousin, Friend. She invites participants to bring a photo of their Mother, a story, and a potluck dish to share that she would have enjoyed. “We tell stories about our Mothers, talk about unfinished business, and where it is appropriate and wanted, tell each other things our Mothers would have told us, or things we would have liked to have heard from our Mothers,” says Shae.

Through remembering, we are no longer alone. Through sharing their stories, our Mothers live on among us.



The first Motherless Mother's Day Celebration was in 2010 on a cold, gray, Portland Mother’s Day morning. Fifteen participants gathered under a covered picnic area in a park, wrapped in blankets and extra jackets that Shae had brought. 

This nurturing instinct runs deep in Shae’s DNA. She recalls huddling with crying women and screaming children under the framework of a dressing room doorway in a California department store during a severe earthquake. “Something came over me and I said in a loud voice, ‘It's okay! We're going to be alright, we're all together!’ As soon at the world stopped shaking I said, ‘Come on everybody, let's get out of here!’ and I led them to the nearest exit. There's something in me that wants to comfort and help people who are frightened or grieving, because I know what it's like to feel scared and alone.”

Scared and alone – Shae frequently experienced these emotions in the years following her mother’s death. “Grief moves cyclically through our lives, it is not a linear process,” Shae notes. “Every year on Phyllis’ birthday, the anniversary of her death and Mother's Day, I would experience an upsurge of grief. I avoided going into stores right before Mother's Day because of the constant stream of commercial-babble (E.g. 'Show Mom how much you care this Mother's Day!') It was like plunging a knife into my heart.”

We’re stronger when we’re together.

After completing her training as a Life-Cycle Celebrant, Shae realized there were other people in the world who were also experiencing this sense of loss and grief on Mother's Day. “We can be so isolated in our society, this is why it’s important to form logical or intentional communities,” Shae says. “My Motherless Mother's Day Celebration sprang from my belief that we can get through a dark night of the soul together much better than we can if we're alone.” 

Gathering with other “motherless” mourners on Mother’s Day, Shae was surprised that the celebration produced equal part tears and laughter. “I knew there would be tears,” she says. “The laughter part was a surprise, and a gift. It’s like the group is breathing a collective sigh of relief: I am no longer alone. Someone else understands. Other people have lost their Mothers too. I can rise from the ashes of my sorrow and form new bonds, new friendships."

Participants express relief; a burden has been lifted. They ask, “Why has no one done this until now?” Shae replies, “It is what is needed for our Time. There is a Spirit of the Time, of each Age…the Zeitgeist. Those of us who are paying attention, who have our finger on the pulse of what is needed, are creating new patterns, new celebrations, new rituals and ceremonies. This is what we do as Celebrants.”

What is today tradition, Shae believes, began in one person’s imagination. “Someone, or someones, felt a need for something in their community and it so resonated with what others wanted and needed that the community embraced and adopted it as their own. And repeated it. And passed it down to their children and their children's children.” Shae’s Motherless Mother’s Day, now in its fourth year, is well on its way to becoming an important community tradition. How do you mark Mother’s Day or other days of remembrance for those no longer living? 

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With thanks to Shae Uisna for sharing her story and her work. Shae says, "As a Certified Life-Cycle Celebrant, I honor participants’ beliefs, life-experiences, religions and spiritual choices, without imposing my own beliefs. My over-arching goal is to be as inclusive with as many people as possible." You can email her or visit her Motherless Mother's Day Facebook page.

To prepare for our first session at Stephen Jenkinson's Orphan Wisdom School, my class of scholars - as he calls us - was asked to reflect on the name bestowed upon our cohort: People of Mountain Longing. 

“Longing has the flavor of grief,” Jenkinson said at the workshop I attended at Marylhurst last Fall. To me, longing feels ancestral, something bequeathed to us, an embodied response to the full-hearted, broken-hearted condition of being alive. Paired with mountains – which cultures throughout time have seen as the meeting place of Earth and the heavens, a place where humans can communicate with their gods – mountain longing carries a sense of spiritual quest. At the same time, mountain conjures a physicality, a one-foot-in-front-of-the-other challenge, plodding at times but with the promise of elevation, freedom.

I don't yet know why this name was chosen for us. Perhaps it references the experience of those who came before us to this place in eastern Ontario: the Algonquin of Pikwàkanagàn First Nation. Their name means "[beautiful] hilly country [covered] in evergreens". According to their web site, archaeological evidence indicates Algonquins occupied the Ottawa Valley for at least the last 10,000 years. Stripped of every imaginable freedom to practice their culture, speak their language, and traverse the land upon which they had subsisted for those 10,000 years, a deep legacy of longing must permeate the community to which I prepare to travel. 

These speculations stirred reflections of my own, about my experience of mountains, of the people in my immediate lineage, or the loss and longing I carry.

When I had the chance to choose a college, I picked one by a mountain, in Portland, Oregon – an hour from Mount Hood, an hour from the Pacific Ocean, a city dotted with extinct volcanoes. I had grown up in the harbor towns of New Haven and Honolulu. My mother saw to it that we camped in the mountains during our early years. Weekends during summer visitation in Hawaii, once my father had moved there with his girlfriend, included a hike in the mountains as often as a trip to a beach park. Reed College, besides being halfway between my two sets of parents (and 3,000 miles away from each), featured a freshman orientation backpacking trip on Mount Jefferson. Eager for a life unpopulated by my prep school classmates (not a single Hopkins graduate had ever enrolled at Reed) I knew who I wanted to claim as my people: backpackers. For my high school graduation my mother gifted me a frame pack and sleeping bag; my father, hiking boots. I spent that summer climbing the 29 flights of steps to my father’s Waikiki condo, the pack stuffed with laundry.

That first backpack trip confirmed my nascent longing for time in the mountains. Last year I took six backpacking trips into the Catalina Mountains of Southern Arizona and the Olympics and Cascades of the Pacific Northwest. This year I’ve been out twice; just this last weekend, a pilgrimage to the Chiracahua Mountains where the US Cavalry struggled for years to defeat the Apache.

More than anyone, my Nonna, my mother’s mother, put mountain longing in me.  She grew up in the Italian Piedmont, a region surrounded on three sides by the Alps. A tiny clan of Pre-Reformation Protestants whose cultural survival depended on the sanctuary of high places after being declared heretics by the Roman Catholic Church, the Waldensians arrived in Torre Pellice, what would become her hometown, in the early 13th century. Immense Roland family pride links us to Waldensian hero Henri Arnaud who led “the Glorious Return” to the valleys in 1689, in which two-thirds of a 1,000-strong band of exiles perished; the remaining 300 escaped slaughter by 4,000 amassed French troops under cover of a storm and, before the army could catch up with them, a change in political alliances. 

On my Nonno’s side, the Jervis family hadn’t been Italian for long. Immense family pride connects us to the British Admiral John Jervis, who imposed limes on the Navy, thereby curing scurvy and allowing Britain to rule the world’s seas. By the mid-nineteenth century with much of the family off colonizing India, teenaged Annie fell under the spell of the Garibaldi Freedom Fighters who were in England raising funds from the anti-Papist well-to-do for their Italian unification campaign. She ran off with one of them to Italy; the family jewels came too. The Freedom Fighter took the jewels and gave her syphilis in return. (My grandfather carried a childhood memory of visiting this blinded aunt in a ruined palazzo in Naples.) Her brother, my great-great-grandfather, sent to fetch her back, stayed to tend to the Garibaldi wounded and married a Waldensian woman.

Elena Roland and Ernesto Jervis conducted their courtship in the mountains, where their adolescent Waldensian group spent every opportunity outdoors, picnicking, climbing, hiking up with skiis on their backs and gliding down. The Jervis brothers embodied athleticism, adventure, escape from my grandmother’s strict Victorian father. Years later, she recounted these glory days on Mount Granero to me in great detail; she gave me her cool woolen ski pants which I wore to shreds in my twenties. 

When Mussolini declared Catholicism the official state religion and membership in the Fascist party was required for my grandfather to work as an engineer, they immigrated to the United States. I never heard Nonna express any yearning for the country of her birth – only those mountains. The mountain cost my Nonno's brother Willy his life: executed in the town square for aiding the Resistance with his mountaineering skills, a mountain refuge now bears his name. 

My Nonna embraced America wholeheartedly: a Protestant country, Roosevelt, the freedoms despite wartime restrictions and their limited finances, and – the mountains. They lived in eastern cities but she loved the Mountain West. When she visited me in Oregon she instructed me in how to walk down a steep grade – “You see, you place your foot like this” horizontally, across the mountain, “and now like this.” An adult backpacker by then, I humored her, not yet appreciating that even though I thought I didn’t need to learn this lesson, she had a strong need to impart it. 

When my Nonno died after ten years of cardiac and cognitive decline, I met Nonna back in Torre Pellice, her first return to her native land without her beloved husband and my first adult encounter with this ancestral place. We had planned for me to help her up to Mount Granero to spread his ashes. Before I arrived she got spooked about the legalities of transporting his remains. I found that she had already quietly mixed the ashes in with the soil of his mother’s grave while planting fresh begonias on it.

Of my father’s people, we know nothing beyond the assurance from his politically conservative, Southern Baptist sister that, “We’ve always been Americans” – but assuredly not “Native”. 

While there is much I don’t know about my people, I do know that I come from generation upon generation of emigrants. From the Waldensians fleeing persecution over high mountain passes to my maternal grandparents leaving Italy and never looking back; from my father leaving Charlotte, North Carolina to attend Andover and Harvard and never going back (his father was the traffic manager for a cotton broker and his mother cashiered at the A&P; their first car was a used one they bought to drive North to witness his graduation); to his moving from Connecticut to Hawaii six days after my parents’ divorce, and never coming back; to my own definitive departure from my mother’s home to the opposite coast at the age of 17.

“Longing is choosing,” I heard Jenkinson say last Fall. “Grief is the midwife that turns desire into longing.” In my 51 years I have known much of desire, and, increasingly, something of longing. I have some experience of grief, but more, a sense of carrying the grief of generations in my family, mute and inaccessible without the skills I seek to learn; of being surrounded by the unacknowledged grief of my culture, so desperately in need of the skills I long to embody and leave behind.

I didn't know what to expect when I agreed to offer a workshop on Creative Rituals for Times of Transition for Villages NW, the grassroots movement that supports aging-in-place. What a thrill to have more than 50 participants resist the springtime sun breaks and gather together at TaborSpace! 

And what a range of life experience they represented: divorce, retirement, facing an empty nest, coming from isolation into community, from community into solitude, the adjustments within a military family, the incapacitation or death of a parent, the death of a partner, the birth of a new business, downsizing, illness, becoming a crone - and more. 

We explored ways to mark, mourn, or celebrate these transitions using some of the framework I shared in February's post on Ritual Vs. Routine. Those observations centered primarily on the role of ritual and ceremony in focusing our intentions and providing structure that helps us to access more meaning. 

But I've spent much of the week reflecting on another powerful function of ritual: the way it connects us to each other, to our common humanity. A workshop participant put it like this on her feedback form: "From birth to death we need ritual to remind us that we are part of the collective community."

A year ago in a Memorial Day post on year-round memorialization projects I highlighted Monday Hearts for Madelene. Every Monday I, along with thousands of others around the world, get an email with an image of a gorgeous handmade heart crafted by Page Hodel in memory of her beloved partner who died from ovarian cancer at age 46; it's the continuation of a ritual she began in their courtship days. Recently Page wrote to her email list:

Last Monday, Page sent out a plea for help. She invited her extended community to share their family's vintage black and white photos with her to complete an "Unfinished Heart". Mid-week she reported her astonishment at the response: literally hundreds of "stunning images" from all over the world... from South Africa to Japan to California... "The history contained in these images is extraordinary. The clothes, the hairdos, the cars, the cultural differences, yet we are all here sharing life's greatest joy, loving our families and friends. There are your parents when they were young and falling in love, the grandparents on picnics on blankets on hillsides. The babies, the loved one you have loved and lost. It's all there." 

Page's words attest to the power of the community created when she chose to share a ritual that was once between her and Madelene alone, with the broader world.

*         *         *
With thanks to Page Hodel for the weekly inspiration, and Lily for introducing me to Page's project. Please visit Monday Hearts for Madelene to learn more.

And thanks to Chana Andler and Villages NW for inviting me to offer this workshop, and to all of the creative souls who attended. If you're in the Portland metro area, check out this dynamic new community-building resource: Villages NW. To find out about Villages in other parts of the country: Village to Village Network. 

The new year found me sitting in a circle around a firepit in Tucson where the good souls gathered had cast into the flames what they sought to shed from 2013, and tucked into their pockets what they wished to beckon in 2014. A scrap of conversation with the person next to me captured exactly what I cherish most these days…

Four principles, a four-fold path (in the parlance of the improvisational movement practice we were discussing): Show up. Pay attention. Tell the truth. Be open to what happens next.

My work as a Life-Cycle Celebrant brings me into daily contact with people doing just that, whether creating ceremonies to mark major life passages, observing simple daily rituals, or gathering for intimate encounters at a Death Café. That’s why I concluded, reflecting on my time in Bhutan, that one need not travel to the other side of the globe to find stewards of the sacred in abundance.

In tribute to everyone who is showing up, paying attention, telling the truth, and being open to what happens next, here is my list of 20+13 occasions for gratitude from the year just past.

1.  Writing: I set out to write 50 stories in 50 weeks on my blog and it not only got me writing, it got me thinking like a writer and reconnected to other writers. Best part: paying more attention to the stories that surround me (see below).

2.  Readers: Every post brings the joy of responses, a cascade of stories flowing from other stories. And who doesn't appreciate praise like this? “Holly’s newsletter is like a clear voice coming through the fog reminding me to be present to life.” Wow!

3.  Published: The lovely journal Cactus Heart published my essay: My Friend Marcy Has Cancer. I Don't (Yet). which I was inspired to revive through my immersion in the Death Cafe movement.

4. Witness: Marcy Westerling, friend of 20+ years, lets me look over her shoulder at her Livingly Dying. I am continuously humbled.

5.  Nature: Six backpacking trips, all but one with actual backpacks and two weeks living outdoors in the Michigan woods reinforced that sense of wonder that’s harder to feel within four walls.

6. Mother: Our adult relationship transcends the involuntary bonds of biology. She did not choose to get pregnant with me any more than I chose her as my mother. But we choose each other now. Two glimpses: It Takes a Neighborhood, A Tree for the Ages.

7. Father: If he’d had a funeral, I might not be on my current path. I commemorated the 12th anniversary of Ken Pruett’s death by commissioning Holly Swan of Ash & Earth to make a memorial stone I can hold in my palm or wear around my neck. And I wrote a trilogy of posts about my path to forgiveness: Letting Go of My Dad Part 1 & Part 2.   

8. Kids: A week without my playdate with these darling darlings is a less joyous week, indeed. 

9. Amber: It’s been 12 years since Amber and I declared our commitment in front of our nearest and dearest and we’re still thankful for each other every day. 

10. Weddings: I had the opportunity to co-create and officiate some lovely weddings this year, and to muse about the meaning of it all.  

11. Funerals: I had the unparalleled honor of assisting with 8 brave and beautiful tributes this year, including one that was 19 years overdue.  

12. Death Cafés: I cofounded the PDX Death Café and witnessed the courage of hundreds of participants. Kate Brassington, one of my fabulous collaborators, explains “Why I talk about death”. 

13. Teachers, formal: I trained with the magnificent JerriGrace Lyons of Final Passages, one of the mothers of the death midwife movement, and was certified as a Home Funeral Guide. I dipped my toe into the deep waters of Stephen Jenkinson’s Orphan Wisdom and will travel to his school in eastern Canada for more in 2014.

14. Teachers, informal: Before she died, the utterly irreplaceable Val Garrison said this, “There is no magical group of perfect friends who will never disappoint you. Embrace the imperfect family.”

16. Students: The Unitarian Church invited me to teach a three-week course in Creative Rituals for a Changing World. Such a wonderful group to explore together the cairns that mark the path behind us and the way ahead. 

17. The unknown: Three cheers to my clients who embraced liminality – that in-between state of becoming. And to those who stepped forward from divorce, finding ways to release, in John O’Donohue’s words, all that is unforgiven.

18. Remembering: So many ways, from simple to elaborate, to caress the echo… as long as I live, you too shall live. 

19. Colleagues: I’m finding my new tribe. As much as I’ve thrived for years in a community of political activists, these days I’m finding my place among the healers and meaning-makers, the revivers of lost arts and architects of new ways to walk through old portals, as Andrea Carlisle artfully observed. 

20. Serendipity: And through it all – the showing up, paying attention, and truth telling – the biggest gift of all has been the mystery of what happens next, something unearned, without guarantee… experiences and outcomes that cannot be willed but arrive on the wings of grace and gratitude. 

+ 13 of my favorite stories from the year:

1. The dutch oven that brings Peggy Acott’s mother back to her. 
2. Monica Wesolowska’s important and achingly honest memoir of surviving her infant son’s death. 
3. Best use of blow torch: healing from divorce. 
4. The circle of love created by Kristel and Trevor’s family.
5. The memorial quilt crafted by Becky Bent that finally found its home. 
6. Dannielle Yates’ use of sound to clear the air, literally. 
7. The community-building celebrations of Liz & Pat’s 25 years together and Holly Blue’s wedding. 
8. The gratitude ceremony Emily created to celebrate the community around her gender-affirming surgery. 
9. Lara Vesta’s story of a woman who found her own name.  
10. Charlotte Eulette’s story of a celebration of life that was 8 years in the making, which led to Kathy’s 18-years-delayed ceremony for her mom. 
11. Alethea Devi’s further proof that there are many ways to sanctify a relationship. 
12. The cosmic baton pass from Stephanie’s deceased dad to Jay during their wedding.
13. Andrea Carlisle’s eulogies for her brilliant dog Brio and heroic cat Hadley Mae. 
    

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With thanks to tc colbert for the four-pillar inspiration.

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.

This week's post is from Peggy Acott, in tribute to her mother. Enjoy!

This was my mother’s cast iron Dutch oven. Heavy and carrying a sense of substance and history. I think it was a wedding present to my parents, over 60 years ago. Seasoned and well-cared for, it barely shows its age, except in the smooth, matte patina of its interior, reflecting its years of soups, stews and pot roasts that it brought to fruition. It sits now on a shelf in my kitchen, not often used; but one of the things I would want to grab in the fire/flood/catastrophe evacuation scenarios I consider from time to time.

While I would like to go into a fond discourse about my mother using said Dutch oven to stir endless tantalizing dishes in the years of my growing up, that simply is not the truth of it; I only remember few and far between occasions when it made an appearance. She was, by her own admission, not much of a cook - she often remarked with a certain awe how it was that I had come to be so interested in food and cooking. “You didn’t get that from me,” she would say.

She was a crucifier of fresh vegetables. It was a long time before I could bring myself to encounter a fresh zucchini, what with the memory of those limp and mushy grey-green circles on my plate growing up.

But I fondly remember my mother for the exception-to-the-rule culinary events: When dad had to work into the evening and not come home until late, mom and I would have “breakfast for dinner,” which meant fried eggs and bacon or sausage, oftentimes pancakes or waffles. It felt deliciously conspiratorial, like we were breaking the rules or playing hooky from day-to-day life, she and I together. The maple syrup never tasted so sweet.

Then there was the year when I said I wanted an apple pie for my birthday instead of a cake. She didn’t bake often, but she didn’t flinch from the challenge. And it was wonderful. I thought so then and even though memory can be a little made-to-order, mine is nevertheless that of a tender crust and an abundance of sugar and cinnamon-laced apple filling. And not canned: this one she did from scratch. I felt well-loved and special that day.

I remember her cooking meals on a Coleman two-burner camping stove that sat on the kitchen table during a severe wind storm when the electricity was out for days; the kitchen dark at night but for the coldly blue-white, hissing glow from the kerosene lantern at the other end of the table, and a nearby flashlight when she needed to see the details inside the pot she was stirring. The windows rattled and wind gusts slapped the house, bending the trees throughout the streets around us. But we were safe and warm and together and nourished by the simple food she cooked.

Car camping. We did a fair amount of it when I was young: The secret thrill of getting up in the cool summertime pre-dawn darkness and carrying repeated armfuls of supplies to our rotund, turquoise ’53 Ford (careful to not let the screen door slam because everyone else on the block was sleeping and it would be rude to wake them), like we were sneak thieves escaping into the night, loading the car with all our camping paraphernalia. I loved our camping trips. Once we arrived at our destination, still in the early morning, the ritual of unpacking: Setting up the table with the camp stove, the dish tub nearby, the box of supplies and the cooler. Setting up the large, canvas tent that was tall enough for all of us to stand in. Putting down the sheets of newspaper in a layer and then smoothing over the top a thin plastic sheet, a ritual to keep out the damp from the ground; blowing up the air mattresses and rolling out the sleeping bags and blankets on top. The campsite would be bedecked with clotheslines and folding chairs, an assortment of important necessities for the comfortable camping life.

Which brings me, finally, back to the Dutch oven. 

I have a strong and enduring memory - not recorded on film, so it is now, after all these years, mine alone: It was raining on this particular camping trip, and we were sequestered in the tent. There were books and cards and board games to keep us occupied and it was all part of the Grand Adventure. For some reason, however, mom was cooking chicken and dumplings on a grate above the campfire in the Dutch oven. I have a memory of her, sharp, though oddly in black and white like the photographs of the time, standing over the campfire, in the rain, in the woods, stirring and checking on the pot of chicken and dumplings. Maybe holding an umbrella over her head, I’m not sure.

She was Adventurous. Undaunted.  Willing.  Game. 

Okay. It was car camping. But still. Dinner hung in the balance. She stood in the rain and stirred. The dinner was all the more delicious for the effort it took to make it happen.

*          *          *

My mother has been dead now for nearly two years. A cancerous brain tumor took her away in a swift momentum that I could barely comprehend at the time.  Months before the tumor was discovered, mom and dad were in their apartment, scaling down their belongings to try to de-clutter, simplify, put everything they owned within their own reach, and in the process trying to foist off onto me any and everything they could. I was saying mostly no, occasionally yes. Then the Dutch oven appeared.

“Do you want this?”

“Hell yeah.”

Long dormant, that cast iron vessel was somehow the symbol of the most elemental part of my mother’s tending to her family’s nourishment. And that wonderful, adventurous image of her poised over the campfire, in an unlikely attitude of cooking. Yes, I wanted the symbol of that.

That Dutch oven is now mine. I love pulling it out of its place on the shelf and filling it with the ingredients for a hearty meal. The heft and weight of it is comfortable and substantial and definitive. Somehow, in a whisper of memory, it reminds me to be definite. To be certain. To be undaunted. My mother, that part of her anyway, revisits me. Every time.


Thanks to Peggy for sharing this savory story. Visit her at Story to Ceremony.

I lost my father early on to his work and then to the four-year affair that culminated in my parent's divorce on my 12th birthday. Six days later he moved across a continent and an ocean, in a self-imposed exile that lasted twenty years. By the time he was diagnosed with terminal brain cancer at age 63, I had so much practice in losing my dad that I knew how I wanted to do it this final time. I spent eighteen months as his part-time caregiver. It was the best our relationship had ever been. When he died, I had no regrets. 

I’ve heard it said that forgiveness is a process, not an act. In my case I recognized the process only once it was complete.

I had held it together during those precious months when my father and step-mother's needs were at long last congruent with my desire to be family with my father. But when it was over, I needed an outlet for the hurt I still felt over his repeated abandonment; for the fear I felt throughout this, my first real confrontation with mortality.

My father hadn't wanted a funeral, according to my step-mother - and she couldn't handle one more thing. I received a yoghurt container with a portion of his ashes, his veteran's flag, a threadbare B Kliban cat t-shirt I'd given him 25 years earlier, and other mementos of his life. I decided to organize a backyard memorial service of my own. 

I'd completed all the logistical planning, determined the elements of the ceremony. Only one piece remained: clarifying what I needed to say to my father through this memorial, what I needed to embrace and to release. I planned a two-day retreat to the Oregon coast where I would immerse myself in the remnants of my life with my father - the letters we'd exchanged, the family story interviews I'd done with him in graduate school, photos, journals.

I asked my mother to be there for me, a primal "I want my mommy!" impulse as I faced my grief. As soon as we settled into our motel room I feared I'd made a huge mistake. We had shared the loss of my father from the very first, when he brought us home from the hospital after my birth, left the car running, and went immediately back to work. But she, of course, had her own experience of this man - her first love, her husband of 15 years, the father of her children whom she'd seen only twice after their divorce, who had refused her request to say good-bye once diagnosed with terminal cancer. Our feelings about this man, loving and losing him, had been so enmeshed for so many years, could I step into and through my own process in her presence?

Without needing to discuss it, my mom wisely headed out to the porch looking out to the sea. She sat with her back to me reading as indoors I spread all of the artifacts out on the bed and wrote and sobbed my way to what I knew to be true. When I finished, she came inside. I read what I had written to her. 

Among the things I was ready to say to my father was: “You did the best you could.” My mom objected: No! He could have done better. He should have done better!

Yes, of course, he should have. And in theory, he could have. But what stood sturdy inside me then was not the ways I’d been hurt by his failings, but my recognition that his capacity to love had been so stunted. I remembered the story he’d told me about a contest of wills with his 1st grade teacher; he’d refused to draw because she hadn’t told him how. What first grader doesn’t know how to draw? 

I felt blessed that my heart had not been similarly confined. I knew in that moment that I’d crossed a bright line from the treacherous emotional terrain I’d traversed with my mother and father, to a new, more spacious place. 

Read the story of the surprising end to the memorial ceremony I created for my dad, how I marked the 10-year anniversary of his death, and the eulogy I wrote for him after all those years.