Category Archives: Livingly Dying Essays

Finding Peace on the Tightrope

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It’s been a quiet week on Harold Street. I re-started standard of care chemo last Wednesday and after my steroidal protections wore off, I retreated to bed. I felt lousy and exhausted. Sitting up for ten minutes seemed an accomplishment. My extreme response surprises me since the treatment, Gemzar and Avistan, is pretty light in the world of chemo options.

Am I so weak as I continue to stabilize from my January/February deterioration that I can no longer tolerate chemo? Or after five years of heavy treatment is my body just declaring its limits? I have chemo again this Wednesday, my birthday.

I feel unsteadily perched on a tight rope – on one side is the land of advanced terminal cancer, where I have learned to live well, on the other side is end stage cancer, which I have tried so hard to avoid.  images

But aren’t we all on some type on tightrope? And how much control do we truly have?

With love, marcy  images

“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” – Susan Sontag

Making Real the Good, Bad and Ugly of Terminal Illness – Thank You Yes! Magazine

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Maybe it’s because my work as a community organizer is in my blood, I push to include people and issues that are less understood into routine conversation. Maybe it’s because, while I accept my stage 4b (there is no 4c) ovarian cancer diagnosis at age 50, I still don’t like how it has transformed my life. Or maybe it’s because I hear too often “You look too good to have cancer” from people who don’t understand how that innocent, off-hand comment can disappear my reality of living for five years with continuous chemotherapy treatment.  Whatever the reason, I want to create visibility for the ever-growing community of people living with terminal illness who are in treatment year after year. (Are we survivors? Barely. I am quite sure we are not “thrivers”. I settle on veterans as a better moniker then my personal favorite, losers.)

Illustration by Julie Notarianni

Illustration by Julie Notarianni

I asked a national magazine to cover the topic of people who have terminal disease but are still active in life. They did. Yes! is a quality magazine that takes tough issues and presents them in a solutions frame. We should all be subscribers. I encourage folks to “like” the internet version of the article to show public interest in mortality as a topic for conversation. And who better to lead the discussion than those of us forced into being experts.

In the time it took to move this article from concept to print, far too many of the women I quoted have died. A sadness. Being terminally ill is not a philosophical concept for us; it is an endless process of saying goodbye. It’s gritty and real and currently lonelier than it needs to be. Each of you that listens in or shares our stories are part of the solution.

If you are game – please click on the link and then click the “like” button. Thanks!

http://www.yesmagazine.org/issues/the-end-of-poverty/livingly-dying

warmly,
Marcy

What I Learned About Living From Dying of Cancer

Many more patients are now living for years with the diagnosis of terminal illness. The author describes her journey to what she calls “livingly dying”—facing her death by living in the moment with grace and mindfulness.

by Marcy Westerling

Dying inevitably follows living. What makes for a good death in a just and sustainable world? I think about this a lot these days. Four years ago, at age fifty, I was diagnosed with late-stage ovarian cancer. Active and fit, it took a collapsed lung and two broken ribs before I realized I had a big problem, the ultimate challenge of life: facing my own death.

In the first weeks after learning I was terminally ill, I wondered, “Will I face this in my heart or in my head? In my head, it is a storyline I can make interesting, wise, and abstract. In my heart, it is a constant tremor radiating from my stomach.” As the first months of terror subsided, I began to adapt to my “new normal.” My medical team advised, “You must start living as if the next three months are your last. When you are still alive at the close, make a new three-month plan.” I resolved to hope and dream and build in smaller allocations of time.

I made huge shifts in my life, severing two critical anchor points. I moved to the city from the small town that had been my home for 25 years—my isolated existence in the woods seemed too daunting for the emotional swings of terminal cancer. I retired from the organization I had founded and that had been my life’s work for 18 years. I knew the long hours and stress of the job I loved would deplete the strength I needed for cancer treatment.

I qualified for Social Security disability income thanks to the government’s “compassion clause,” and this got me Medicare two and a half years later. I stepped into my new life determined to live as long as possible. I decided I would live to be 72 years old, 19 years longer than the statistics predicted and an age I found acceptable to die.

It’s estimated that one in three people in the United States will receive a cancer diagnosis at some point in life. Some people die quickly. Others diagnosed as terminal continue to live fully even while facing a death sentence. A friend who had watched her mother die of cancer remarked on my vivacity. In the 15 years since her mother’s death, there have been advancements that make the devastating side effects of treatment more tolerable. Still, it has taken me years after my diagnosis to re-embrace the commitments that populate a full life.

I chafe at being invisible as a person with cancer. I am a lifelong feminist and community organizer. I believe in breaking silence and sharing truth. I pass as “normal”—healthy, white, slender, and heterosexual (having a husband helps). I have lived a life of privilege. For now, I don’t look or feel like I’m dying. I am just terminally ill.

Recently I was reminded of the great Rachel Carson. She hid the pain of her end-stage cancer to keep her Silent Spring message of environmental degradation alive in Congress and mainstream conversation back in 1964.

In 2014, I can choose to be visible. I have a tattoo on my wrist declaring me a “Cancer Warrior.” I sport buttons saying “Cancer Sucks.” I pedal everywhere, slowly, on a bike that announces “Cancer on Board.” I defy every attempt to limit me to my diagnosis as I dare the world to ignore it.

But sometimes I feel I am as isolated in shouting about my diagnosis as Rachel Carson was in secrecy. I look so good that observers may well conclude that the sign on my bike, the button on my bags, even the tattoo on my wrist represent strength and survival. Public or private, silent or loud, the outcomes are the same. Disease creates isolation and barriers from the world of the well. A friend with terminal cancer notes, “We cause discomfort to some because we are living, living in acute awareness of our impending death, living in pain but living as fully as we can while we are dying. Should we lock ourselves away in a figurative darkened room so as not to chance disturbing the hale and hearty with thoughts of death?”

People say odd things when they attempt to comfort the terminally ill while avoiding their own fears. “We are all terminally ill. You just know it.” I more than “know it” as my weary veins dodge yet another dose of chemotherapy, toxic poison that will bring me to my knees with exhaustion, nausea, and brain fog while hopefully keeping me alive a while longer.

While the statistics gave me little hope, real people with cancer provide inspiration. They look normal and live well. They laugh, watch TV, and travel. They haven’t stopped living, even as medical appointments, surgeries, treatments, and side effects disrupt their days.

I sought out other women living with a pink slip from life and discovered how hard it is for us to find each other. Medical privacy laws don’t help. Advocacy groups are often Web- or hospital-based, but not everyone flourishes in those settings. Eventually I created my own support circle of other women with terminal cancer. The group is called “It’s a Dying Shame,” and the outreach flyer states, “Our goal is to explore the rich and peculiar territory of facing our own deaths. Together we can mine the humor, strangeness, and beauty of a life turned upside down. Join us for tea down the rabbit hole.” Our group meetings provide a cherished time to speak our truth without taking on the emotions of friends and family.

People often say to the terminally ill, “You are so stoic, so graceful. I could never handle this so well.” Perhaps not. The truth is you have no idea how well or badly we, the dying, handle it. Kim, diagnosed as terminal three years ago at age 34, says, “Each day can vary greatly. Is it a doctor appointment day? Scan day? A day of total rest and relaxation? A day that the thought of me dying before age 40 leaves me immobilized, weeping in bed, and tightly grasping a heating pad? In a month’s time I go through all of these typical days. And then some.”

Social media also allows us to communicate with new ease about approaching death. Thousands follow Lisa Adams’ blog, where she describes every aspect of the medical and emotional realities of facing death as she copes with raising a young family. She doesn’t make it look easy or pretty. Lisa and other dying bloggers offer a view of pain that is normally rarely witnessed and ask that people with terminal cancer be seen as more than “courageous.” Guardian columnist Emma Keller and her husband chided Adams for over-sharing. I think that those who condemn our process are distancing themselves from Lisa—and me—and from the reality of protracted death.

The current rules of polite conversation make the journey toward death more challenging. One woman said to me, “It is like we are standing in a different room.” We are avoided or jollied up. (“You look so good you can’t be terminally ill” is the most hated and common of compliments.) These approaches insulate people in our culture from sitting with death, sadly but comfortably.

When people with terminal diagnoses communicate about their experience, it may make their walking toward death more doable. I cannot think of subjects better suited for full honesty than birth and death.

There is a trend to reframe some terminal cancers as a chronic disease, perhaps to avoid mention of death, to give hope, or because some terminal diseases are becoming more manageable over the years. One woman in her 40s rejected that label after six years in treatment: “For most people, it makes sense to make plans beyond one month at a time, but even that short a time-frame can turn out to be optimistic for me. Unexpected side effects catch up with me; treatments that we thought were working cease to work months earlier than expected, and suddenly we are thrust again into making life-and-death decisions, lacking any real information about what may—or may not —buy me even a few more months of life. Making plans in this context becomes almost a joke. Something about this state that I live in seems really different to me from what I think of as chronic illness. It is more like a slow dying process, during which I get to LIVE.”

I have noticed many of us with terminal cancer are of good cheer and even invigorated by having no presumption of longevity. We have little choice but to live in the moment; something many talk about, but few can manage. When you live treatment to treatment and test result to test result, there is less room for distraction by petty stresses. We can’t expect to live another year, but if we do survive one year, or five, or ten, we consider ourselves very lucky. My mandate is to live with the shadow of death seated comfortably on one shoulder—I rarely forget, but I often dismiss, my new companion.

I have made a certain peace with leaving this world, a peace experienced only after pondering what I might do, where I might be, what I might become after I die. I live in a culture that offers few views of what happens after death—it is either THE END (humus for the ages), or it is some mythic version of heaven and hell. Neither option works for me. I imagine my next world as Peter Pan did, “To die will be an awfully big adventure,” even if his image of death is more boisterous than mine.

Weeks after my diagnosis, before relocating to the city, I sat in the spring sunshine by a creek at our homestead while my sweetie did the chores I couldn’t do post-surgery. This was a favorite spot of mine. The chickens made comforting clucks in their enclosure to my right while the ducks quacked comically in the pasture to my left. The warmth of the sun reached every nook of my body. I was surrounded by so much that I loved—the tears I cried were happy ones. Couldn’t this be my heaven?

Today, I live in a lovely neighborhood, in a lovely house surrounded by pleasures that don’t take away the sorrow of departure. My life stays filled with joy and meaning as well as sadness and grief. I am livingly dying. Dying is woven into the reality of living. Neither is easy. But just as we live as a community, let’s face death as a community too.

Marcy Westerling wrote this article for The End of Poverty, the Fall 2014 issue of YES! Magazine. Marcy is a long-time community organizer with a passion for justice. She founded the Rural Organizing Project (ROP) in 1992. She is currently on her seventh approach to stabilize her cancer. She blogs at livinglydying.com

A Look At Envy

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A former colleague joined the recurrent Ovarian Cancer club recently and we have re-connected in a sisterhood far beyond tax fairness. We accept our reality while exploring every avenue for slowing our walk towards death. She wrote a poem I share below. I, with recurrence in 2011, relinquished my envy of old age as I focused on living long enough to turn 60. I have friends who would love to reach 50, or 40, or 30 and suspect they will not. As a child the first phrase that I was ever motivated to memorize was, “I cried because I had no shoes until I saw a man with no feet.” But admitting what we envy is to be human.

Before dying at age 44, a friend interviewed “little old ladies” so that she could experience that future knowing she would never live it. I loved that problem solving just as I love Sandra’s clarity with words.

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Old Age Envy by Sandra Morgen

Envy unleashed:

walking past a man in his 70s

hauling himself down

an uneven path

before summer heat

boils the morning.

Last night

under a vine maple

lit by a gibbous moon

the silhouette of

a couple in their 80s

her blanched hair escaping hairpins

his back straight with effort

frail fingers knotted.

I used to dread old age

imagining loss, dementia,

fading, being a burden.

Cancer trumps those forebodings

incubating envy

but not resentment

an aching appreciation

of what is unlikely to be.

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Can You Hear a Snail?

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The Sound of a Wild Snail Eating by Elizabeth Tova Bailey is a profound and lovely book that shows how rich being alive can be no matter how “confined” we appear. Written by a woman dramatically bedridden (sitting up to travel to medical appointments, her only outings, is not possible) by the onset of an unknown disorder. This young and vibrant woman accepts her life lying down where just changing position is a big adventure. Rather than resist, she embraces her reality and builds a full world. A wild snail, brought home from a visitor’s walk in the woods she can no longer visit, is given a small perch on her nightstand. The snail’s world, vast to it, becomes her portal to stimulation and engagement.

A GREAT Book

A GREAT Book

The other week I attempted an honest response to how my summer has been. A summer of loss, I named it. I wrote in rebellion to an acquaintance having described my status (to me) as “Great!” I wrote that update while equally loving the summer of 2014. I regret my inability to capture how times can be both grim and wondrous – one truth need not cancel the other. Acceptance is the bridge. Increasingly I believe that balance is a core purpose of life. Joy despite sadness.FINALScreen_Saver_ETB_5_copy-300x168

This morning I found out that my cancer seems to be breaking through treatment. I grieve. I handle logistics for my next journey to treatment on Monday. I prepare for a more intense period while feeling wonder at entering a phase more intense than the now. The dog and I walk through the woods and find enough comfort to know it is all just fine. I am not okay with my reality but  I can accept that it is my reality.

Excerpt from Chapter 2: Discovery

“Each evening the snail awoke and with astonishing poise moved gracefully to the rim of the pot and peered over, surveying the strange country that lay ahead. Pondering its circumstance with a regal air, as if from the turret of a castle, it waved its tentacles first this way and then that, as though responding to a distant melody.”

Reporting In

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Some periods of time are too dense with experiences to narrate. Add in the sharpness of the struggles, their lack of resolution, a heat wave, a chemo cocktail designed to knock you on your ass and a bit of silence might ensue. My focus is on putting one step in front of the other. Surviving.

The good news is we are surviving right now and still imagine August as a calmer month. Perhaps I will have vignettes to share then. I pack for my third trip to NYC since June 21st. This trip I do solo, despite my husband’s protests. With an uncertain travel future looming and mounting costs, I need to know that I can make whatever path I follow sustainable.

The last trip really felt vacation like even if we never got much beyond the infusion suite.

This trip will be down and dirty. I will be late to arrive, early to leave, just getting in my 29 hours of infusion time. Turned away at the deluxe, free cancer housing in midtown Manhattan with a terrace to delight

Me, reclining with chemo overnight bag pumping away, on the cancer terrace.

Me, reclining with chemo overnight bag pumping away, on the cancer terrace.

and a waiting list to match, I got adopted by an old colleague in West Harlem – a touching kindness and a treasured connection to my non-cancer life.

In lieu of truly filling you in on the now, I offer a brilliant short piece written by my first cancer pal, Bev. She has offered me solace as I learned to live with terminal cancer. This week she entered hospice. She will leave this world with a bit of my heart. Enjoy Mystery Bag, a little peak at living with cancer.

Mystery Bag by Bev Lipsitz

I was in a writing group for women with cancer. One day, the facilitator brought in a bunch of paper bags. She told us to pass them around and without looking, feel inside each bag.

Then she gave us each our own bag, and told us to reach inside,  and still without looking,  write about what we found.

When I felt inside all the bags, there was only one item I could identify. It felt like a swizzle stick. I thought I might write a story about a wonderful vacation in Hawaii.

But I got a different bag, with something I couldn’t identify by feel. Hmmm, what to do next…

Let’s try a CT-Scan. Fill the bag with contrast.  Lay it down and slide it in and out of a machine that looks like a giant donut.

Click, click. Breathe. Hold it. Breathe. Hold it. Click, click.

Sorry bag, the pictures show that it’s cancer.

Oh no! Now what do we do?

Surgery! Slice the bag down the middle. Take the damn thing out. When you’re done, staple the bag back together.

Oh this thing is ugly. Can we learn anything more about it? Sure…Slice it up. Send samples to the lab. The report comes back: its OVARIAN cancer. OH NO, everyone says that’s a bad one!!!!

Did we get the whole thing out? Leave any pieces inside? What if there are some crumbs that didn’t get out?  How do we get rid of those?

Chemotherapy! That should take care of it. Pour some poison in the bag.  What’s that? The poison burned a hole in the bottom. Anybody got any tape?

Oh by the way, even if this works for now, this cancer could come back. We might have to do this all over again…and again…and again…

This bag is a mess. I wish I had gotten a different one, maybe one with some candy in it, or a brownie.

You know what, though? This bag is stronger than I thought. Even with the cancer, and the poison, and the staples and tape, this bag can carry a lot of stuff. Don’t worry, bag. If that thing gets too heavy for you, we’ll bring in reinforcements. Wrap you in a blanket. Make you comfy cozy. Sit with you. Don’t be afraid.Unknown

 

Thank you, Bev, for your clear way of looking at our lives. Dont be afraid. love always, marcy

Good Deaths, Good Dying

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The opening line of my friend’s sister’s obituary moved me with its gentle force. The sentence named the deceased, summarized a few of her accomplishments and then announced that she had, …”peacefully ended her own life at her home on May 20, 2014.” The photo shows an attractive woman brimming with life. She decided how to cope with her diagnosis of Alzheimer’s Disease when diagnosed four years prior. From what her sister narrates, and another lovely photo captures the day prior to her death, this woman decided to have a good death.

Beloved sisters saying goodbye.

Beloved sisters saying goodbye.

A good death is not that easy to come by. I am no expert but I have been in the club of the dying for the last four years and I have watched quite a few deaths happen, more than quite a few. Labeling a death “good” or “bad” is risky but for me they seem to fall into those simplistic categories. A good death is the one we want. Right? We might vary in how we describe it with some imaging a dramatic ball of unanticipated flame as an ideal way to end it all but for most of us, the notion of having a period of closure with loved ones, then a selected few gathered around in a familiar and peaceful spot then taking your final breathes with no active pain or resistance seems ideal.

It should be easy to stage a good death but neither life nor death is always amenable to choreography. Barriers to a good death include individuals not able to express a concrete vision, usually because they don’t have a safe and encouraging circle within which to plan, let alone not living in a society that accommodates such choices – individuals, community and society.

I watch another friend journey towards a good death. In March 2014 it was not on the horizon. By April she had a stage IV lung cancer diagnosis and a “treatment plan” of “morphine and home hospice.” By the end of May she started on oxygen. Her communiqués throughout never feature her diagnosis or prognosis. A woman of few written words she focuses them as the below sample shares:

May 21, 2014 sunny day-planted snow peas and asters

May 26, 2014 sun peaking in and I have plants to get in dirt

June 2 WONDERFUL FEW DAYS WITH MY COUSINS FROM WI SO WARM AND FUNNY AND JUST THE BEST!

I love watching her revel in every passing moment. Her cancer and approaching death she dismisses with a brief mention of her fear of pain as the cancer grows but her hospice team remind her of their skills and so she heads back out to the dirt, the view of the mountains and I appreciate that a good death is proceeded by a good dying support team.

Another day and another post will look at how a society can join this process.

Anniversaries

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April is my cancer anniversary month. It marks when I bid goodbye to my intended life (so presumptuous!). Initially there was a huge divide between my life BC, before cancer, and WC, with cancer. I am four years into my new life and it more than not resembles my old. I have reclaimed meaning beyond my medical appointments. Cancer is not ALL I think about, instead it is a new nuisance much as my before cancer life was filled with nuisances.

I retain respect for the unending panic that subsumed me when informed I was terminally ill. I make room in my life to reach out to the newly diagnosed knowing the fear, as well as the power of role models – people living with cancer and people in treatment.

In August 2010 Christopher Hitchens shared the sentence that most resonated with me “…but now that I view the scene in retrospect I see it as a very gentle and firm deportation, taking me from the country of the well across the stark frontier that marks off the land of malady.” He never got a chance to rebuild with cancer as he died in frontline treatment.

I appreciate my years of living with cancer but I suspect I will never celebrate my cancerversary with any cockiness or zest. I walk on tiptoes, still, always, but content. I am here, I am here, I am here!images

Below I share my first communication post diagnosis. I hope and suspect that I will never again experience such despair.

Journey With Cancer – The First Hello
Written 45 days after diagnosis (June 2010) and my first formal communication to friends and supporters.

April 20th, 2010 at 6 pm, I park on the side of an Oregon highway waiting for a return call from a doctor. It is gray. I learn that I have “advanced cancer” in a brief call. 36 hours later that diagnosis is refined to Stage IV Ovarian Cancer. There is no Stage V.

In the diagnostic roller coaster leading up to this call I have bartered endlessly, assuring myself of how accepting I could be of any diagnosis but cancer. Congestive heart failure, sure. Rheumatoid arthritis, easy. A fungal infection with a 25% risk of death, absolutely. I share my bargaining chits during various emergency consults where anonymous healers attempt to figure out why the lung of a healthy, fit woman has collapsed. My negotiations fail to amuse a single doctor.

April 22, 2010: it is Earth Day and two days after that initial call. It’s also day three of the oil gusher in the Gulf; it’s the day my dearly departed little brother would have turned 43; and it is the day I am handed my formal death sentence. Any show of control collapses. I have drawn the shortest straw in my diagnostic bundle. My life as I had constructed it comes to a close. Crash, boom! Any illusion of free will has been replaced by the will to live.

It is 45 days later now. I have been coming to terms with my short straw. I see my job as using acceptance to construct a new life, however brief. In recent weeks I try on many faces including wise, gracious, funny and sad but I am never as genuinely sad as when I walk out of my Ovarian Cancer Support Group meetings. It is then I feel in the deepest pit of my stomach the very imminent reality of my death. God damn.

Feeling my death is so raw, unlike anything I have felt before. Thinking about my death stays a mere exercise of intellect – it is a removed and obvious truth that I can surely handle. Feeling death is so incredibly sloppy. Slow tears trickle out as I move towards a very different type of acceptance and grief. There is nothing for me to give permission to in this experience. Death is coming for me and it could be coming fast. In allowing myself to feel the reality of death, my stomach lurches endlessly, radiating out in cold, sharp spasms. It is as though I’m enduring a constant replay of the dream-fall when sleeping – the one where the stomach heaves you awake just as you realize you will hit bottom. But this is real and there is no dream to awaken from. This is a Stage IV Ovarian Cancer diagnosis when you have suspended thinking and grasped TRUTH.

I am re-born in this free fall. I am re-born to the council of my medical team, “You must start living as if the next three months are your last. And when you are still alive at the close, make a new three month plan.” This is living with Stage IV Ovarian Cancer. It is a sneaky diagnosis that will allow me to look and feel great as the cancer makes its own decisions on longevity. It will decide which three months are my last. We will all find out together as the final three months dawn.

I believe I can do this. I will learn to live in three-month intervals. I will hope and dream and build in smaller allocations of time. But am I going to do this in my heart or in my head? In my head it is a mere storyline I can make interesting, wise and abstract. In my heart it is a constant tremor radiating from my stomach as I fall to my death several times a day or, sometimes, several times an hour. I am offered drugs to derail the anxiety as I fall, but what do I lose if I take the edge off? And, if I don’t take the edge off, how will I get anything done or feel any joy or feel anything other than desperation?

45 days in to my new reality and I am bald. My signature long blond hair is gone. Catching a glance in a mirror is jarring, demoralizing. Why this overt humiliation now?

My living quarters are reduced to a single room generously loaned by dear friends to allow me easy access to treatment. They shower me with love, laughter and attention. My middle class American life has been whittled down to what will fit in a few bins. The bins taunt me with lessons of detachment. Must everything now be about preparing me to leave this world?

I have started to vanish. I can sense colleagues and friends, overwhelmed with the demands of their own lives, cutting me out of the day-to-day flow of work-based communication, so as “not to derail me from healing”. I crave updates about everything that formerly was my life. It’s been a mere 45 days and my erasure from the news of the day is underway. Does no one else see the irony of not distracting me from getting well? So many ironies at Stage IV.

There is so much more to acknowledge, like the bundles of love sent my way through cards, food and good reading material. As I free fall, kindness envelops me and cushions such a scary moment with light and possibilities. As we all struggle to find our best place in this very real drama please don’t fear making mistakes. Cancer is a mistake. Reaching out to me will never be a mistake.

I am lonely and scared. I am like a little Who from Horton Hears a Who — hanging on a thistle screaming out, “I am here, I am here, I am here.” Please hear me, love me and help me live this last phase of life as completely as possible. Just don’t rush my disappearance. Please.images

Marcy Westerling
Oregon • June 10, 2010

Oopsie Doopsie!

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I hope everyone enjoyed the youtube of my friend Annie explaining why oil trains criss crossing the world are not sane nor safe. But, of course, I was not trying to educate on that important topic.

So here you go – the real youtube –

https://www.youtube.com/watch?v=365W0sJq8BE

And thanks for being such helpful readers. Two folks kindly corrected my silly lapse in calling my RECIST read of the ct scan a resist read last time. Two oopsies in a row! It takes a village to keep a blog accurate.

What the Heck is Livingly Dying, Anyway?

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I strive to embrace livingly dying, a phrase I credit to the late Christopher Hitchens even as I co-opt his language. I see it as staring at imminent mortality and yet residing in the world of the living – finding the balance. How do you experience the concept?

Below I share a youtube that a filmmaker, Gerard Ungerman, made this past winter of me grappling with the topic as part of his Respectful Revolution series.

As you have a few minutes, please chime in with your perspective in the comment section at the close of this post.

The correct you tube is

https://www.youtube.com/watch?v=365W0sJq8BE

Another fine but unrelated one is here – I goofed in the original post  https://www.youtube.com/watch?v=6OK8Nut6y1U

Warmly, marcy

The Fault In Our Stars

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One good recipe for bypassing self-pity is to exchange stories. The telling relieves you: the hearing amazes you. “Oh, my!” you realize, “it’s all okay in some wacky-grossly-unfair-but-just-fine way.” Sometimes that exchange can happen via a good book. The Fault In Our Stars by John Green is one such book. I got hooked fast as the lead character, Hazel, displayed honesty I could relate to as she narrated the crass realities of a cancer support group for teens.

I share a review from National Public Radio. I cut and paste below for ease. It’s a little tip on a book worth getting your hands on. Enjoy.

Warmly, marcy

The Fault In Our Stars by John Green

The Fault In Our Stars by John Green

‘The Fault In Our Stars’: Love In A Time Of Cancer by RACHEL SYME January 17, 2012 5:28 PM

The Fault in Our Stars by John Green

In his Pulitzer Prize–winning book The Emperor of All Maladies: A Biography of Cancer, Siddhartha Mukherjee writes that as recently as the 1950s, cancer was so feared and taboo that the New York Times refused to print the word in a support-group advertisement. It was the second-leading cause of death in the United States then — just as it is now — but it was as mysterious to most people as mortality itself. There is something monstrous about a disease that kills by wanting to live; cancer’s goal is to grow and prosper, with absolutely no regard for its host. It makes sense that people couldn’t speak about it — it’s not easy to commiserate about a nightmare.

And yet, human instinct tells us to band together to fight our enemies, even on the cellular level. Gradually, with scientific breakthroughs and education, cancer became less of a mum word and more of a buzzword. Hollywood jumped on the drama surrounding the disease, and soon films like Terms of Endearment and Beaches were keeping tissue companies in business. Novels and magazine articles highlighted survivor stories; television started adding characters afflicted with illness. Even Sex and the City‘s carousing Samantha had her share of chemo.

In recent years, the trend has gone one step beyond talking about cancer — the goal now, at least for pop culture, is to find the humor in it. Fortunately, John Green is the kind of writer to deliver it.

John Green is the New York Times best-selling author of Looking for Alaska, An Abundance of Katherines and Paper Towns.

A Friend, Indeed

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One of my original friends in Oregon took on the role of advocate-in-chief when she heard of my diagnosis. She showed up the first night, phone to ear and stayed on the line until she got me the next available appointment with an oncologist. She is always there, often ahead of me in recognizing when I might need more hands-on assistance. She never waivers and has never said, “well, maybe….” in a way that makes me regret asking. She flew to Philly on her own dime for the trial intake interview. She is loyal and effective and most definitely the ‘secret weapon’ that coordinated entry into this clinical trial that required such pursuit.Marcy10:6:12

My diagnosis has impacted my circle of family, friends and colleagues in ways large and small. Holly, my advocate-in-chief, was a highly regarded political consultant when I was diagnosed. Now she is a licensed celebrant with a developing specialty in end of life support. (She is still regarded highly as a political consultant, it is just harder to access her time.)

Holly shared perspectives in the essay below, My Friend Marcy Has Cancer. I Don’t (Yet). Enjoy. Warmly, marcy

As a Funeral Celebrant and organizer of the PDX Death Cafe, death – and what happens before, during, and after – is on my mind quite a lot. And so I thought I should share an essay I started several years back about the big questions. The journal Cactus Heart was good enough to publish it this fall.

My Friend Marcy Has Cancer. I Don’t (Yet).9462551

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.7:4:10 HPMW

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.

Aging in Place

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            The Center for Disease Control defines aging in place as “the ability to live in one’s own home and community safely, independently, and comfortably, regardless of age, income, or ability level.” A lovely, simple notion with a growing fan base working to insure services and community spirit are there to allow such aging in place to happen.  Everyone benefits. I, though, define aging in place as waking up every night at 4 a.m. wracked by joints and muscles crying out for attention. There is no position that offers solace. I am in my early fifties. I used to look younger than my age, used to be in the top fitness level for my age, but now I am aging rapidly in place, courtesy of living on chemo.

            My last ct scan documented the necrosis nibbling away at my bones, most notably my hips. Chemo apparently interrupts the blood flow leading to bone loss. What I know is that I bend to pick things up as if I am imitating an old, old, old person. If I sit too long, I rise at an attention-attracting slowness, pulling myself up and then lurching stiffly the first ten steps until I start loosening up to resemble someone younger than 80. I cross the street with care knowing that I have but one speed; there is no spurt capability to rev me out of the path of an unexpected car. I used to be known for a different one speed. I zipped as if I saw a fire that needed to be contained. A favorite childhood photo shows me as a determined toddler, using speed, hands engaged, forward leaning, eyes focused, as I jettisoned my toy baby carriage to whatever captured my attention. I was always on a mission.

Marcy on the Move

Marcy on the Move

            Ironically, as I return to chemo next week after a 55-day break from all treatment, I anticipate some lessening of joint discomfort. The cytoxan (one ingredient is mustard gas) is used in a pill form to treat arthritis. When I started it back in early June it miraculously cleared up my walking woes – I went from a woman needing a cane to a woman moving through life with relative ease. Perhaps that will happen again!? While I hope for some respite, I know that same recipe of cytoxan and avistan will further the cumulative damage to my body in its effort to keep cancer at bay. And, of course, the nausea will be back.

            I need to accept this body under siege as my own. I have been fast forwarded through an aging process courtesy of treatments. I look older but mainly I feel significantly older than my years now. photo 1The ct scans show that it is not an imagined feeling. The wear and tear is real. While I resent this, my form of acceptance has me seeking out the humor in it. There is much irony to be found.

            I, who fret not getting to live through old age, am having it delivered to me. It seems that really, middle age is what I may not experience. My entry into cancer world was an entry into senior world, cancer being a disease that disproportionately impacts older people. I am ‘retired’ despite my current age being labeled as “peak earning years” – another joke as I downsize text messaging out of my phone plan to save a few dollars. I join the daytime tai chi classes filled entirely with elders. Almost everywhere I go I am the youngest, often by far. My mother and I now face the same issues – burial plans, sleep time discomfort and movement challenges. But she is in her eighties. She is chronologically suited to this aging in place.

            An early on cancer pal, Val, since deceased at the age of 44, died looking so young and angelic – her wasting body resembling some innocent 10 year old. She was a filmmaker and poet who loved to get people’s stories out of them. She loved elders – the wisdom and whatever else attracted her. I never fully understood. She told me her biggest regret was not getting to live those senior years. Her plan was to interview them to gain access to the experience. I never asked her how she dealt with her own aging in place – frankly, her treatment arc may not have given her that experience. She went more from exuberance to frontline treatment to long remission then to 18 months of active wasting away. My trajectory is more steadfast decline.

            So much of life’s journey seems to be about taming the ego. I am middle aged but feel much older. It sucks but really, why care? If I let go of my ego (Don’t I look good for my age?) I can enjoy the sublime truths of being multi-age, nimble once, swerving towards dowdy now and voluntarily raising my hand for any treatment option that keeps me on this planet albeit feeble and slow moving. The same day as I drafted this I watched an older woman in her late 70s perhaps even early 80s, quite attractive, move swiftly from curb to the middle of a busy street where she then adopted a more sedate pace. I admired her. That is who I intended to be; instead I stick to my new one speed. But in that speed I bike wherever I need to go, I accumulate 12,000 steps daily per my pedometer’s tracking with 30 minutes of these steps taking place on a trampoline as I jog in place with weights in my hands hoping to rebuild some bone. I am not what I expected at this age or any age but with my new mantra of ‘slow and steady’ I get where I want to be and I have gained skills in leaving my ego aside. Perhaps, I am a more evolved person at this sedate pace, as if I care. aging

Now, How Did We Get Here?

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I was recently asked to pen this summary for an In Her Own Words column for the regional ovarian cancer newsletter (http://www.ovariancancerosw.org/). Since writing the summary was helpful for me, I thought it might also be helpful for readers of this blog to step back and look at the consolidated version of the arrival and survival with metastatic cancer. So here it goes…..

In my own words…..Marcy Westerling

At age 50, I was having a wonderful time and experiencing exciting work as a community organizer with a passion for justice. I had founded the Rural Organizing Project (ROP) in 1992.

Speaking against wars at home and abroad

Speaking against wars at home and abroad

My 50th year was all about transitions, the most exciting one having me take a leave from ROP as I accepted an Open Society Fellowship to advance my model of organizing at a national level. Then, in the spring of 2010 as I turned 51, my bliss was derailed by a Stage IV ovarian cancer diagnosis.

It started on my birthday with a vague feeling of heaviness. I wondered if the lovely cake family had made was proving too much for my system. The feeling didn’t lift and in subsequent days I mentioned a sense of someone sitting on my chest. Odd. I stayed active, but climbing slight hills on my bike required breathing tricks – it was like I was practicing being a woman in labor. A visit to the doctor led to a diagnosis of bronchitis, which didn’t make sense given how well I felt.

At the start of the appointment I mentioned that I also had intermittent stomach issues in recent months and I asked to talk about that too vs. waiting for the appointment I had made several months back to take place. They said, “No. Both your lungs and your stomach are big topics – you must choose one.” The appointment focused on my breathing. I had never before left a doctor’s office feeling silly.

In the next week my breathing became increasingly labored until I could no longer talk on the phone to make an appointment. That night I could barely climb the stairs to bed. I dreamt of an ambulance coming for me. The next morning my distressed sweetie found no argument as he drove me to urgent care.

Luckily, the doctor on duty was fantastic. Oxygen was given and x-rays were taken before he even completed my chart review. In a no drama way, he said I would need admittance to the hospital to figure out, “why the lung of a young, healthy, fit woman had collapsed.” He was so calm, so was I.

I texted friends as we commuted to the hospital thinking, “I’ll never again have such an exciting 15 minutes of medical fame.”  I wanted everyone to know, “Marcy’s lung has collapsed!” It seemed cool.

The ER docs fast went from being comedic pals to sober workers as they narrowed the list of possible causes. They extracted two liters of amber fluid from my right chest, allowing immediate relief. I wouldn’t know until months later that that doctor told my friends in the hallway, “The situation looks grim.”

It would take a few exploratory surgeries and some false leads before I was officially informed on the side of the highway on April 22nd, 2010, I had some form of advanced metastasized cancer. For those who love drama, and the diagnosing of advanced cancer stories are always full of drama, details can be found in my short essay, The First Hello.

I have been in treatment since then. I often say, “I never went home after diagnosis.” Of course, I did but not really. My husband and I had laboriously and lovingly built the life we had wanted.

The happy couple 2009

The happy couple 2009

It was based on the premise of staying alive and in good health. We lived in the woods with few neighbors. A half-acre pond was our front yard.

Our home at the pond

Our home at the pond

All around the pond were the orchards, animal pens and never ending year round beds for vegetables and flowers. We fed ourselves from what we harvested, sold eggs and imagined a small farm stand at the end of our driveway that would be the pension that neither of our cherished day jobs offered.

We loved our lives but with this diagnosis, I knew immediately any effort to stay alive would require building a new life – it would be in the city and it would include rigorous focus. My husband was more bereft than I at our loss. I had choice; he was along for the ride. Luckily, we live amid rich community and friends took over. They housed us in the city during frontline treatment, handling meals and facilitating decisions, allowing Mike and I to be dazed by the chaos of disease’s arrival.

By my last of six frontline chemotherapy treatments, my CA 125 was respectable and our move into our new city life was set. We started over. We built a life accepting the “new norm” and geared to bolstering my odds. They say that diagnosis via a collapsed lung means you have a ten % chance of surviving to two years.

I passed that marker in April of 2012 with little fanfare, as I was seven months into my first recurrence with my cancer far from tamed. An essay, Expiration Date, marked the occasion. That summer was especially hard as I experienced fairly extreme Doxil burns on my butt, hands and feet before being pulled off that chemo which had had minimal impact on my cancer. I coped by writing It’s A Dying Shame and some other essays. I started a support group across ages and diagnosis; it was for women wanting to talk about staring at mortality and also called It’s A Dying Shame.

I strive to embrace livingly dying, a phrase I credit to the late Christopher Hitchens even as I co-opt his language. This past November I did a reading at a coffee house of Livingly Dying essay excerpts and this September I travel to an Adirondacks retreat for a writer’s residency to decide where I might go next with the topic.

In April of 2013, twenty months after starting the qualification process, I transitioned from traditional treatment efforts to stabilize my cancer here in Oregon (OHSU) to a Phase One, Cohort Four immunology clinical trial at the University of Pennsylvania in Philadelphia. Quite a harrowing commute for medical care!

I had my official Phase One final treatment at the close of August. Odds are I will continue the commute for maintenance vaccines until I recur (and move to Phase Two) or run out of vaccine material in another year. But I await testing in late September and the resulting decisions. A great thing about treatment at Penn, though, is they don’t discard you from clinical trials if your disease progresses, the norm, they just adapt. I like that attitude. It matches what patients are forced to do.

Finding myself on the cutting edge of medical breakthroughs (or one more splendid failure), I decided to write a blog so that others seeking to prolong living with advanced cancer have easy access to my experience. It is called Livingly Dying – notes and essays on daily life with terminal cancer and if you like it, I hope you will spread the word to others. To date women from 45 countries have accessed the site.

Perhaps bartering my body for medical advances will grant me more time to find the sweet spots of living fully while terminally ill. While I stay saddened at how deeply interrupted my life was and how likely it is I will die younger than planned, I do marvel at how content Mike and I are with the life we rebuilt. We had a good life. We have a good life.

The happy couple 2012

The happy couple 2012

Treatment Summary

Diagnosed: April 2010 Stage IV Ovarian Cancer – standard frontline therapy (Carbo/Taxol), optimally debulked, started parallel Phase Three clinical trial (BIBF 1120) in June 2010. Recurred: October 2011with multiple visible tumors in abdomen, started Gemzar/carbo. Carbo stopped in March 2012, Gemzar in April. CT Scans showed some tumors stabilizing while new tumors appeared. Started Doxil in May with Avistan added in June. Doxil stopped in August due to mixed CT scan and burns on hand, feet and butt. Surgery to remove easily available tumors set for early October – this was not technically a second debulking (because conventional wisdom of the time does not recommend them) but it did gather needed tumor for the Autologous OC-DC Vaccine Phase One trial I had been trying to enter for 12 months and gave me head start going back on chemo. Started low dose Taxol with Avistan in October 2012, which I stayed on until April 2013. Disease reduction with no new growth shown in January and May 2013 ct scans! My care transitioned to University of Pennsylvania with first treatment (Cytoxan, Avistan, Vaccines) of clinical trial June 5th and 6th 2013. My ca 125 has been at 7 since February 2013. (Unfortunately, I can have new cancer growing with a ca 125 of 13.)

Scapegoating of the Disabled 2013

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Today I posted on facebook a link that came across my inbox. I editorialized before the post,

“I am a proud voter and a proud beneficiary of social security disability. Both keep me alive to some extent. And now this….I hope they add MARCY WESTERLING to the list – come get me.”

Flyer Targets People with Disabilities

August 2013

August 2013

People with disabilities are now the target of a hate group in the Portland area. Neighborhoods are being littered with this handbill attacking people with disabilities who receive public assistance. With an underlying tone of violence, this vigilante attack states that people’s names are being posted where they can be seen by taxpayers. The author suggests that receiving benefits makes people with disabilities a threat to the republic.

The Portland Commission on Disability requests that anyone who has received or seen this flyer to please report it so they may track it. Thanks to Human Rights Commissioner, Linda McKim-Bell for bringing this to the Commission’s attention.

Publicly sharing my name for broader use in this context was a conscious but quick decision. I was taught that to stand up for justice, you must stand up out loud.

Adding my name also deals with the issue of ‘passing’. I have passed throughout my life. I am an Aryan of the type Hitler claimed. I am as white and fair as they come. I look heterosexual, if there is such a look, but certainly the presence of a husband helps the case. I am slenderish, menopause and cancer treatments rounding me out more than a bit. I have lived a life of privilege, and even within the sour luck of being diagnosed with metastatic disease, I have managed to work a tough system to gain access to Disability and Medicare – two fantastic programs denied so many because of the waiting periods and reduced income.

I have lived a blessed life.

Standing up for a just society sometimes means that I have to go outside my comfort zone and declare my privilege. I don’t look disabled. I don’t even look sick most of the time and when I am sick, it is invariably because of the treatment. You mainly feel cancer when you are dying. I am not dying right now. I am just terminally ill. There is a big difference for some of us.

I stand up for every person confined more dramatically by his or her disability, vomiting in a bowl, restricted to an institution, or machinery. There are so many faces of disability including the many that don’t qualify because they don’t know to try or they fear the stereotyping that this flyer displays. The flyer says disabled = slackers, the ruin of our democracy.

I share a concern over our democracy but more over how every day whistleblowers are criminalized versus valued, and my list goes on.

We have a lot of disabled people in this country. By some accounts it is a growing number, and perhaps, a growing issue. A dialogue about disability is probably overdue but these flyers should not lead the debate. They could if we were to stay silent. And furthermore, of course, we can find slackers in our bunch. They are there by the pound on Wall Street and in every other layer of society. Let’s not find the 1 case in 10,000 to make a dishonest storyline work.

Disabled is a label few would choose – to be put ‘out of action’. You only need to hang with some disabled to see a lot of action but it may be different action. Some of us blend in well, others are quite obvious, and for both categories the onus is hard – proving you are normal versus taking on the pity/compassion of others. Adding in the label of slackers’ is not just wrong, it is too much because we are a group of people who wish to not have so many barriers to get through before resting.

As a currently able-bodied disabled person, I share this great cartoon and caption. I hope I look great but believe me there is a lot of effort to pass for today. And I am never sure about tomorrow.sick

Warmly, marcy

Meet Kim – 36, Stage 4 Lung Cancer & a Wonder

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My best friend in cancer world is a woman named Kim. I met her several years ago at the clinic where we both get complimentary care to enhance our ability to survive our vicious treatment regimes. She was so young, so pretty, so caring towards others; and so bald. I wanted to encourage her. Then she showed up with dramatic weight loss, leaning on others to walk, even her huge smile was dimmed. I approached her husband when she was in treatment, giving him my contact information, “if I could be of help”. He gave a resounding “yes” and so we went out to coffee that day. Kim, it turns out, had just learned that her lung cancer that she felt confident in defeating at stage 3c, was actually stage 4. She was crushed with what that meant.

With brief daily exchanges, we track each others relative positioning – are we needed or are we both set to make it through another day with metastasized cancer colonizing our bodies. While monitoring each other we have fun. Perhaps the best part of our relationship is that we never need to explain.

But Kim is good at explaining. I think many of us wonder, “What the hell do other people do all day?” Well, here is a glimpse at one day in the life of someone staring at mortality all day, every day. Kim used to be a top athlete; now her triathlons are all with the medical system – our shared new norm.   warmly, marcy

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One Day

by kimmywink

I worked on a little project for the organization Caring Ambassadors.  I was asked to write about daily life with lung cancer.  This is what I came up with:

Living with Lung Cancer is no easy task. It is difficult to decipher which is more difficult the physical challenges or the mental challenges. I’ve been asked to comment on what it is like each day living with my terminal disease. Honestly, I feel my life is better summarized on a monthly basis. Each day can vary greatly. Is it a doctor appointment day? Scan day? Day before a doctor appointment day? A day of total rest and relaxation? A day that the thought of me dying before age 40 leaves me immobilized, weeping in bed, and tightly grasping a heating pad? In a month’s time I go through all of these typical days, and then some.

I will run you through a Wednesday of mine. This particular Wednesday is a scan day, the day my cancer is checked up on to see if it is shrinking, staying the same, or growing. The morning looks like any other morning. I wake up before 8 am to the smell of brewed coffee. I have a cup while I make a morning protein smoothie. For the most part, I eat a very consistent diet in hopes to eliminate GI issues, that are often a problem. As a former morning person I say my AM’s are slow. After smoothie is made I plop myself back down into bed, with my computer, and 2 bottles of pills. Fist down is the anti-nausea pill; 30 minutes later is my daily targeted chemo pill. Once I feel like my stomach has settled, at least one hour after anti-nausea pill, I begin to prepare for my day. I dress head to toe in cotton, give myself my daily blood thinner shot, and pack a light daypack. Today I will perform my new version of a triathlon. I am going to have scans, blood work, and EKG. I’m even going to add a quick stop at the pharmacy for good measure. I arrive on time for a 10:00 am check in for scans. The first is the quick CT of my lungs and abdomen. Thankfully the needle went in trouble free and my blood work was able to be drawn from the same injection point. Next is the brain MRI. This image is peskier clocking in at 45 minutes. Once scans are complete I venture up a few floors to get my EKG. I did not get a latte before my EKG this time; I know it will show an abnormally slow heart rate because of that and a side effect of my targeted therapy. Oh well. After 2-hours of actual doing things at my care center and 2-hours of wait time, my only stop left is a quickie at the pharmacy. I need to exchange my full sharps container from my daily blood thinner shots for an empty one. Finally I am ready to leave.

I make it home without too much frustration after navigating the parking lot. I’m hungry and need to eat before nausea kicks in. I eat a nice salad and drink some herbal tea. Nap time it is. Me, laptop, and cat are ready for our afternoon snuggles.

Tomorrow I’ll be getting the results of my scans. I can’t help but begin thinking about it now. Finally, I am able to catch my required 2-hour nap. This short snooze gives me the boost I need to visit with my my sweetie when he gets home from work. We’ll chat briefly, then decide where to go out for dinner. It’s a night to celebrate and all my running around has left me unable to spend a drop of energy on what to make for dinner. The sweetie could do it, but it’s best to use his energy for meal prep when I’m ill and require his assistance.

Since the blood work was already taken earlier, I can drink wine and not fear that my liver counts will reflect poorly after such indulgence. After returning home from a great meal with meaningful conversation, we’ll end the night with an easy 8-block walk. Now, I am ready for bed. I’m dressed in bedclothes and preparing my evening drug doses. I’ve learned the hard way to take them when I still have food in my stomach. Anti-nausea pill down, anti-depressant down; 30 minutes later targeted chemo down. I’m now officially ready for bed. Or, better put, ready to lay in bed and think of all the possible outcomes of today’s scans. I suspect sleeping will be difficult; within reach is my iPod with several meditation tracks at the ready.

Some days are better. Some days are worse.

http://aquariusvscancer.com/2013/07/02/one-day/

Living a Life With and Beyond Cancer

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Who are we? When we get the cancer diagnosis, cancer and the urge to survive dominate our lives. Depending on the stage of diagnosis, it happens at different levels. Stage 1 and 2 folks seem to learn to tip toe through their normal lives with cancer carried along as a silent companion slipped into pockets of existing pants, jackets and bags. Stage 3 and 4 folks, well, our cancer seems to barely fit in an oversized tote bag making our old scramble through life clearly marred with this weight. We put it down but there it sits, waiting for us to pick it back up because, sigh, it is our burden to carry. It is heavy. It is awkward. It often makes it into a room before we do – like a nine-month pregnant woman’s belly except we arrive to silence and discomfort.

The other day on facebook I found a post that delighted me. A woman I know only virtually and through cancer advocacy (we both have advanced, recurrent ovarian cancer and worked hard to expose the drug shortages and get doxil back in use) had found me mentioned in an article in Yes! Magazine. It was the former Marcy, the community organizer Marcy, the Marcy who loved her life.

And I loved having my worlds meet. Yes, I have terminal cancer. And yes, I have a life. I am still trying to make the world a better place even if the hours I can dedicate to it are lessened by treatments and being in my closing phase of life.

And if you want to meet the Marcy who is a community organizer (and has terminal cancer) please read this article A Caring Economy Requires Building Bridges—Not Burning Them – Traditional organizing makes opponents into “enemies,” but a new crop of activists is using love and empathy to create new alliances and possibilities.

http://www.yesmagazine.org/issues/love-and-the-apocalypse/labor2019s-new-love-building-a-caring-economy-involves-radical-acts-of-empathy-from-both-sides

I can accept and love my current life the most when it accommodates all of me.#66 Cover

The Flight of Val

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My friends,

V-Tuley-at-Salvation-Tree She is gone.

I got this simple post a day late. Weary from an all day cross-country plane trip, I now waited for the train that would take me towards my lodging. I was alone in every sense standing on this empty platform. My Smartphone informed me that Val was dead. My breath caught.

There was no surprise in the news. I had visited Val in hospice the night prior. Val lay there emaciated, glowing, moving in and out of lucidity. Cancer had won the struggle for the body. Diagnosed at 39, surrendering at 44, Val, in the words of her obituary, “relished life.” In the same obituary it noted, “In her hands a cancer diagnosis became a creative medium for conjuring an astonishing rich garden of community.”

I was lucky enough to be a small part of that community.

Val had stable cancer when I met her three years ago, two years into what she once called “This Great Difficult Thing” but she was still getting her ‘magic juice’ every three weeks with an eagerness I found encouraging. Here she was, made to order. I had put the word out that I wanted to meet a stage iv woman younger than me. I needed to be shown that this journey was doable. Val was a good one for inspiring. When I learned she biked everywhere and was recently seen splitting wood, I requested a date with her.

We spent hours strolling the gardens of Crystal Springs. In retrospect, we both lied a lot, saying how, “this was ok, this knowing that we would die younger than planned.” Despite the big lies we shared the smaller truths of how to find comfort with our terror, how to break down the enormity of our diagnosis, how to cherish the invigoration of knowing that mortality was now more than a concept.

She started her own journey by reminding us that, “None of us are getting out of this alive.” Indeed.

We met a month into my own diagnosis. I still had my long hair on that walk. Val and I were different people – she butch to my femme, she poetic while I sought solace in linear thinking, she musical and I without rhythm. And yet we were consigned to the same path, different entry and exit points, but a specialized highway for those with terminal cancer.

We didn’t maintain a high volume of contact. She was enjoying probation while I was entering lockdown. We had different needs. But Val was always there for me.

Our groups, her Salon of the Scathed and my It’s A Dying Shame, became complimentary platforms for exploring the taboo topics encountered when walking towards death or having death walk towards you – it’s never really clear with cancer. Humor, irreverence and rawness were core to our shared style. We were determined to experience the range of emotions and to enjoy the process.

Val wowed me with her soul too large to be tethered in one body on one planet. I don’t know where we go next. I am not in a rush to find out. I like to imagine Val as her own little prince on her own little planet still enjoying sunsets and sunrises – one more image of Val to delight.

Val wrote once, “I want there to be a good story to tell. How I will do battle and overcome. How you can all relax and not be afraid to click on this blog. And in truth, even if the thing does grow there are many more steps to take. There are more options. More story.” The story is now in our hands.

An ode to Val by Marcy – May 2013

Expiration Date: an essay on Livingly Dying

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Technically, this last year was a tough year but, in fact, a year ago I was six months into failing chemo after chemo to handle my first recurrence. My options were not looking great as I penned an essay Expiration Date that I cut and paste below. (Please feel welcome to share.)

Diagnosed with cancer after a collapsed lung, my statistical odds were a 10% chance of living beyond two years.
This past year we fought for and got surgery to remove my largest tumors, found a chemo regime that worked and we keep fingers crossed that my cancer will stay stable until I sign paperwork for entry into the clinical trial May 8th. Today I enter my fourth year with this cancer. Most of the time I am in treatment and always awaiting new blood work to reveal which direction the cancer is moving. There are few opportunities to feel confident.

Not every day is a great day but almost every day has great moments. Just like for many of you, I suspect.
They say tomorrow kicks off a string of sunny days – what more could I want. Well, stable blood test results would be very, very nice as well.  xoxo

Expiration Date: an essay on Livingly Dying

I was once known for buying deals on almost-expired meat. However, I didn’t limit myself to expired meat but that behavior earned me top notoriety in my friendship circle. Taking expiration dates too seriously was never my thing. Expired cold meds even seemed to offer an occasional high – who knew?!

These days I am grateful for my common sense attitude toward dates as I stare down the ultimate expiration date – my own. One month into my 51st year I was given a 10% chance of being alive in two years.

People say funny things as they attempt to comfort the terminally ill while managing their own fears.  One common statement reassures that, “We are all terminally ill.  You just know it”. “Harrumph,” I think. I do know. I more than know it as my weary veins dodge yet another dose of toxic poison infused with the knowledge that it will bring me to my knees with exhaustion, nausea, brain fog. Slight consolation is the hope it will keep me alive awhile longer.

When first diagnosed on April 22, 2010 the doctors made every effort to be factual but tactical.  Incurable and metastasized were mentioned, but not terminal, not palliative care. Yet every appointment from then on seemed to include the statement, “You will die from this disease.” It was like a boot camp mantra – getting me used to my new normal. I was in shock but I could still rebel at that edict. “How dare they,” I fumed. But then one day I realized the only way to avoid dying of this disease was to have some other tragedy end my life. What kind of victory would that be? Would my oncology team really be impressed that I managed to get run over just to avoid suffocation by cancer?  I finally accepted I would not die of old age, but from ovarian cancer. 

I have learned a lot about advanced ovarian cancer. It is recurrent, relentless and fast to adapt to any chemotherapy sent its way. Ovarian cancer is not a particularly painful cancer. I like to note, “my people die looking good.” We tend to move in and out of treatment, giving us some much valued recovery time, which is further boosted by steroids when in treatment. It seems wrong to call our form of cancer a wasting disease. One day the doctor will simply inform me the cancer has outwitted all the chemo types available, and treatment will end. I will then enter hospice and die soon thereafter – looking pretty much like I always have albeit possibly bald and ten pounds heavier courtesy of those steroids. I claim the ovarian cancer sisterhood as my people now, because they teach me how to live and die by example. It is a tough group of women constantly being whittled down with funerals and then expanded as the newly diagnosed walk in.

I stand on a particular type of death row. I have been sentenced, but some vague appeal process offers me the possibility of being an outlier – one of the few who survive for over a decade despite the dire odds. No one knows why. Unlike an actual death row inmate who is confined in every aspect of living, I have freedom of movement, tethered mainly by treatment timelines, financial realities and other choices. What I am denied is the freedom to assume I will be alive three months hence. What started as an insurmountable burden I am learning to accommodate. I move from solitary confinement, to a shared cell and then to a mere ankle bracelet with frequent calls from my parole officer.  It is inconvenient but not intolerable.

For me, I cannot live without hope. When I think of my death as truly imminent I feel a grief that I now see as pointless – I just don’t have the time for such sadness. I choose to save those tears for when I am told it is time to contact hospice and then I will move into that final phase of acceptance.  My current mandate is to live with the shadow of death seated comfortably on one shoulder – I rarely forget but I often dismiss my new companion. Parameters are drawn.

Prioritizing hope does not require me to feel optimistic. I am especially clear eyed right now as I endure my first recurrence too soon for it to be a positive indicator. Worse yet, my cancer has only grown after eight months of renewed treatment on multiple chemos. (Please note: one year later, April of 2013, I am closing out a new chemo regimen that seems to have moved me towards remission as well as entry into a cutting edge clinical trial.)

I have made a certain peace with leaving this world, a comfort experienced only after considering what I might do, where I might be, what I might become after I die. What’s the harm in daydreaming my possible death future? The worst that can happen is that I am wrong. I live in a culture that offers few possibilities around what dying means to the person who has died – it is either viewed as THE END (with many finding spiritual solace in turning into humus for the ages), or viewed in mythic versions of heaven and hell. Neither option works for me.  

Weeks after my diagnosis I sat in the Spring sunshine by a burbling creek at our homestead. My sweetie was doing the chores that I was barred from doing post surgery.  This was a favorite resting spot of mine. The chickens made their comforting sounds in their enclosure to my right while the more rambunctious ducks blurted out their loud, harsh and comical sounds in the pasture to the left.  The garden emerged behind me. I was surrounded by so much that I loved. The warmth of the sun reached every nook of my body. The tears I cried were happy ones. Why could this not be my heaven? Why couldn’t I decide that here I would reside, barred from engagement with my former world, but observing it more happily than not? I make the choice to imagine my next world much as Peter Pan declared, “To die will be an awfully big adventure,” even if he imagines his death more boisterously than I do mine.

I have heard of stoic, terminally ill people who chose not to burden others with their diagnosis. I have yet to meet these people. Others allegedly fear being defined by their illness. My response to the diagnosis of terminal cancer was to count down until the first remission allowed me to get a large tattoo on my wrist declaring me a Cancer Warrior with the script positioned for any newcomer to read. Every bag I carry sports a button stating, “Cancer Sucks”. I dare the world to ignore my diagnosis just as I defy any attempt to limit me to my diagnosis. I bike everywhere, slowly to accommodate the damaged body, wishing for a banner across my back to allow those swiftly passing me to know that I am biking despite cancer in my chest, abdomen and pelvis. What a small way to proclaim what it means to live fully with your expiration date. How comforting it might be to the newly diagnosed to have such models. 

Two years in and my closest friends increasingly challenge what they see as my negative self-talk.  I am in palliative care. I have been in palliative care from the beginning. I missed the few curves that could have portended improved outcomes – longer survivability. All success is measured by longer survivability, especially by me. I recurred too fast. The cancer is now ten nodules versus a few which would be possible to grab via surgery. Yes, I think palliative. I hate it but I would hate more missing this closing phase of life by pretending things were different. 

Deep inside I continue to work on a story line that allows me to live – I fall asleep to the effort, I awake to the possibility.  I pray for a miracle knowing that, really, only a miracle can save me now.   The deepest part of me still believes I will survive despite my intellectual clarity that advanced ovarian cancer is almost always terminal. I just can’t imagine saying goodbye so young. And then I fret; maybe I did talk myself into recurring so fast.

I get my affairs in order. I avoid paperwork at this phase of life and focus instead on my closure — painting rocks for memorial service party favors to be remembered by, quilting for loved ones, making time for conversations I would rather not have. I have written up a burial plan.

I live on death row in a lovely neighborhood, in a lovely house surrounded by perks that don’t eliminate the sadness of departure.  I hold my pink slip from this world. My life stays filled with joy and meaning as well as a mantle of sadness – the former only enriched by the latter. Years prior I wondered, as do many, would I rather die unexpectedly – poof, be gone? I suspect not. I like to orchestrate. I definitely intend to script this phase of life and be thankful for the opportunity.

Some days resentments push forward. I know how much fun retirement would have been with all my friends. Will I really have to miss the magnificence of the maturing front yard that I’m planting this Spring? Will someone else match my devotion to what I leave behind of my life?

My expiration date has passed. I live. Today is another day on death row. I embrace livingly dying, in the words of the late Christopher Hitchens, and I am grateful for this luck.  

Marcy Westerling – Oregon

written Spring of 2012

It’s a Dying Shame – an essay

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Please Note: This essay is adapted from a journal post entitled Messy Snapshots – Reader Beware.

It’s a Dying Shame  A shout out to the less honored side of facing death – when more public grace and stoicism are shoved aside and the darker emotions take hold. What do we hide, and why? What do we lose?  What do I lose if I hide?

I heard a story about the Buddha being approached for counsel on the best way to handle news of one’s own approaching death. Buddha, apparently, began to flail around in deep, loud, uncomfortable hysteria for several long minutes. Observers had no idea what was happening. Just as suddenly Buddha sat back up, done with the outburst, and said, “There is no right way to die.”

This story gives me solace.

People love to say to the terminally ill, “You are so stoic, so graceful. I could never handle this so well.”  Perhaps not, but the greater truth is you may have no idea how well or badly we, the dying, do handle it.

People I am in casual contact with believe I comport myself well. Even though I lack the energy for hysteria or the time for despair, I certainly feel both.  When in treatment with chemotherapy I have the solidity of bodily discomfort to remind me there is an effort underway to keep me alive, and it might just work – in other words, I have HOPE. And with hope my daily life can be oh-so-fine.

When I am not in treatment but need treatment, I sink, hour-by-hour, deeper into a very dark well. It’s the well I found myself in when diagnosed two-and-a-half years ago with metastasized cancer. There were times when I could see some glimpse of sky. But when the sky was obscured, the basic activity of breathing took all my energy.

A message arriving from the larger world – a photo, a mundane tidbit, cookies – allows me to find some sky, whether for thirty seconds or an entire day. That is the power of a tether to the world I fear leaving. That is the power of small acts of reaching out – not fearing to say the right thing, but instead opting to say something.

Since August 2011, when the rising numbers of my blood tests could only indicate recurrence, I have had episodes of complete darkness. The tests and the waiting that surrounds them wrings me out like a shirt hand rinsed more times than its weave can handle. I get my numbers monthly, interspersed with October, January, April and then August cat scans – all of which show my cancer on the move despite switching treatment approaches several times. I am running out of options. The weave on that beleaguered shirt seems unable to withstand another wash. You retire such a beloved shirt. But being retired from treatments only leads me to hospice. These are high-stake test results. My mother urges me to relax. She is old and can’t bear to watch another of her children die. She means well, but relax? — how cruel an intimation. Most philosophers see the ultimate struggle of life as contending with death. I know I will be relaxed, as are most diseased people when death arrives. I am not sure, though, I can stay both human and relaxed while awaiting these announcements of death’s relative positioning – the tests are my only way to check in on its approximate arrival.

Some patients get good news and celebrate. That’s my hope. But I have been traveling an uncharted road, with breath held while waiting for such news. Now fifteen months of lousy test results leave me worn out.

At such loaded moments I need support from contained people who follow my lead – who understand that one minute I might seek updates about weather and children, the next instant I switch to exchanges about my death, my memorial, my hopes, my fears, then back to the best new show on television.

Following each appearance of further bad news, always worse then I anticipated (despite my pre-cancer self always assuming the worst!) is a break in my treatment plan. These are dark, dark periods where there is no sign of any sky. I think of childhood shows like Flipper and Lassie and wonder, “How can they ever rescue me when I am so hidden?” I know Lassie can find me when I see sky, but here in this totally dark zone it must be asking too much. My fate feels sealed. I am doomed. The end is imminent. And I am not ready. There is no courageous acceptance here.

From the start of my cancer journey, I have been held in amazing community. Meals coordinated via a Helping Hands website. A team of friends research best clinical trials. A few others seem to track every infusion date, magically checking-in, knowing that infusions are rarely routine. They are ready to drop their busy schedules to accompany me to an appointment. It is assumed that my sweetie can only do so much.

This community is more than a circle of love. It is a scientific advantage in staying alive. Study after study shows that those patients who are fully engaged in support circles as well as in their health care decisions, survive longer and better.

When the darkest moments hit, I am least able to reach out, and thus links to my support system fail. Out-of-state vacations and busy work schedules steal away those who have been so solidly on the front lines. My stalwart friends, working as a team might be maxed out with bureaucratic efforts to save me. It’s a much needed to-do list, but not a scaffold down to my dark, hidden cave somewhere that I can barely identify. I try to crawl out when my beloved returns, oh-so-tired from another workday moving stones and earth. But they are not the stones and earth that hold me entrapped.

He never complains as I excerpt highlights from my day underground. I share a cute, endearing vignette to prove that really, I can handle all of this; it is safe for him to leave for another day of work. But I know he knows the layers of my pain and carries what he can off with him. Perhaps he truly is moving some of the weight that I feel obscuring me as he wheelbarrows his way through another day.

Does much of this sound stoic, courageous or full of grace? It should not. It is not. It is dirty, sad, barely witnessed pain. And so I ask you, dear reader, be less generous with your accolades. Be suspicious of my silences and smiles. Learn that protracted death asks more from you then being impressed. Dare to look behind the curtain. Dare to assume that I am not stoic, courageous or full of grace between treatment plans.

Allowing more dimensions to emerge makes walking towards death seem more doable. When we keep our conversations polite and are afraid to put down our upbeat masks, it distances, simplifies and cleans up a terrifying stage of life. It forces denial. I cannot think of any moments in life better suited for full honesty than birth and death. The primal pain of birth refuses to mask a dirty process. Death allows more options.

Recently I convened a group of terminally ill women in my living room under the name It’s a Dying Shame. The recruitment invitations mixed humor with frank language and created a little stir. Medical privacy laws make it hard for patients to find other patients so we recruited providers to spread the word. One supportive provider wondered aloud why I would use the phrase ‘terminally ill’. Really? Why?

I have been bludgeoned with that phrase since diagnosis. Maybe I lie. Maybe it is more accurate to say that no one has used that phrase and instead they repeat ‘you will die of this disease’ over and over. Excuse me if I translate what that means. This provider went on to say, “People want to live with hope.” Again I felt sucker punched and could only reply, “But I live with enormous hope. I am determined to live another twenty years. In one hand I hold the scientific reality that my odds of surviving another few years are dismal. In the other hand sit my just as clear-eyed hopes.”

When the room full of women gathered, the shared motivation was to talk our truth. None of us had such space despite all of us having attended other more formal support groups. None of us wanted to be labeled terminally ill but all of us were, even if etiquette requires more gentle language. The current rules of polite company make the journey towards death more isolating. As one woman noted, “It is like we are standing in a different room.” Our truth, though, was expressed with humor, not tears. I hadn’t laughed this much all month.

We are asked to hide the emotional side, even when humorous, to protect a culture that is not skilled at facing death. We lose the chance to become a culture that sits with death, sadly but comfortably, just as we accept that for every baby born, a new dead body is promised. A dead, cooling body need not be scary when we are given such awareness. Instead, we are offered zombies.

My first nightmare happened as a six-year-old after watching an episode of Get Smart, a weekly comedy of a goofy secret service agent. I loved the show but in this episode there was an overwhelmingly crowded room full of mannequins where the agent got trapped. They were over, under and around him at all angles. I was not too young to catch some whiff of the mannequins as metaphors for death. My discomfort with the agent’s situation extended into dreams and entrenched my long-term fear of bodies.

At my grandmother’s open-casket wake I provided hysterics when coached to kiss the body. When my 18-year-old brother died in a car accident, I accompanied my mother to identify the body. He was wheeled in behind a viewing window. Hours later we visited him in the funeral home. I removed the horrifying toe tag wired to him. He was nude. I so hated the minimal sheet assigned to offer warmth, and the thought of him being left alone that night was unbearable. I have disconnected snapshot memories of being at the crematorium and hearing the loud whoosh as his still nude body was fed to the flames. I fled. I was on a plane home before his body was reduced to fragments of bone. I doubt any cultural realities could have made such a tragic death more bearable. Tragic will always be tragic. But would I be less haunted if I could have spent the night with him, washed and dressed him as I imagine he would have chosen, and experienced more than his cold, violated, vulnerable body on slab after slab? I yearned to hold this body I had embraced so much in life.

Recently I had a front row seat in how fitting it is to sit with the body of a dead person. My brother-in-law was diagnosed with ALS nine months before it killed him. We are a small family on all sides. Smaller still by geography. This second terminal diagnosis so quick on the heels of mine seemed rudely timed. But disease is not about respect. His fast entry into hospice and faster yet progression towards death surprised us all.

Few folks made it in time for his final breath but his poet wife narrated it with beautiful detail allowing us all to feel as if we were almost there. We arrived within the hour. The living room was crowded, quiet, yet content. He lay peacefully in his bedroom. Candles were everywhere, as was extra seating; this was an enticing place to be. There were no rules for how long you sat, how often you walked the few dozen paces from the living room to the bedroom, what rituals we each selected to meet our own needs. It was so calm, so cushioned. Further visitors were diverted and gradually the group winnowed down to those most impacted. A day of dying made so organic with so few flaws in the scripting. The twenty-year-old daughter was supported in making the few decisions of the day. How and when should the body leave the house? Death had not been invited but was accepted, anticipated and lived fully.

Fred was not particularly brave about his death. Dementia had obfuscated the diagnosis and whittled down his smart intellect. Social niceties were deeply dulled by inroads of the disease in his brain. He startled all of us those first few months by blurting out “I am scared”, received by a deep silence as we tried to manage our response. How wonderful for me to have someone saying the obvious.

He was courageous, graceful and stoic in life and death, but he was also very real. We are all scared. Voicing our fears may or may not make us less scared but surely it makes the experience more bite sized and human. It opens up the door for actual support. I believe Fred’s fear shrunk just a bit each time he stated it.

Perhaps what I most hate about the predictable adjectives assigned to the dying is how they belittle who I was before being diagnosed with terminal cancer. Having been a shy child, I was determined to be a courageous adult. I was.  Fierce, brave, bold – those are the adjectives I worked so hard to own. I am proud that my life has exemplified those words to many. I am brave for how I have lived my life. I am not brave because of the poor luck that finds me with terminal cancer at age fifty.

Our society oddly conflates poor luck with bravery. Think September 11th. Rescuers were brave. Those randomly stuck in the upper floors of the twin towers, had very, very bad luck. They may also have been quite brave but being there didn’t make that true. Bravery should imply some choice. I am not sure I would have made the courageous choice to be a fireman walking up those stairs.

Members of the terminally ill club to which I belong  — those that acknowledge their status — are a pretty raucous bunch. We laugh a lot. We are irreverent. It is a sad but genuine humor, this humor of the brave who cope by refusing to be silenced with politeness.

My momentary good news is that Lassie is dragging me towards air, towards a bit of sky that marks a new treatment plan. With the return of the physical challenges of active treatment I re-find my hope. Perhaps I can use this three-month treatment cycle to better plan for enduring future bad test results. The cycle is predictable. I will find myself back in suspended animation in my cave where there is so little oxygen to sustain me. I need a better plan because during this current stretch I have barely been able to endure my own psychological stench. But this is what prolonged dying looks like when the messy moments are not hidden from view or glossed over. To camouflage such realities is an injustice to understanding human life, mine included. What would the Buddha say to that?

Marcy Westerling – Oregon

September 2012

Two Years and Counting

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Greetings all.  The month between my birthday (March 25th) and Earth Day aka my little brother’s birthday (April 22nd) in 2010 marks the roller-coaster month of being diagnosed.  A month where I went from a 10 mile/day bike commuter to a woman who couldn’t gasp enough air to climb the stairs to her bedroom.  And thus a collapsed lung was diagnosed and weeks later stage iv cancer.  In that month I lost so much that was. Today I biked the hour each way to my 19th dose of chemo.  Next week I have my three month look/see inside.  The last two such check-ins were full of sad news.  I hope this one is as close to dull as possible.  Regardless, life is good.

Below I share a piece I wrote last month after attending a memorial for a younger friend diagnosed 6 months prior to me.
David’s Sendoff

I did not fret the plane’s departure. There were no papers to hang on to, no bags to lug, no crowds to survive. It was just time to go. And then there I was admiring the world above the cloud laden skies of Oregon – a rising red line marked the emerging sun, small eruptions like stepping stones for giants made me smile as I knew the clouds obscured massive mountain bases below. This journey would be just fine regardless of where it took me.

Yesterday at this time I was getting ready for the memorial of a friend. He died at 42 leaving behind a beloved wife and two young children. Cancer ransacked him. Cancer has me as well, metastasized since diagnosis and yet relatively well behaved compared to the sieges David endured in his 2 years. I prepare to close out my second year with cancer, dependent on chemo cocktails and regular cycles of ill days to stay alive, never knowing when the cancer will surge and end the tentative truce I pretend to have with it. I do know that soon I will surpass the prognosis of a 90% chance of being dead within two years. I am not smug. I get the creativity, control and chaos of my dance partner. But I am content.

Where is David now? He never mentioned death as an option as the rest of us counted down the days to his body’s complete retirement. By the end they were pouring chemo directly into his brain. It was always clear to me, his terminal sister on this journey, that his body was being asked to endure too much.

I dreaded the memorial because I had been so sick the days leading up to it due to an allergic response to my latest dose of chemo. I needed a walking stick. I could not afford to leak a tear, as my body was already so dehydrated. Armored with my gals as chaperones, whether to fight off death or any other assault on my system, we arrived in good cheer and stayed there as we got to know David, the husband of our colleague Grace, far better than we had in life.

The church was at capacity with formally attired folks, somber but grounded in the presence of so many children too young to cope with adult displays of grief. Hushed tones and sniffles took the place of keening. The grieving widow seemed more a bride – gorgeous, smiling, cuddling children in their world of play. Lighting funeral candles was fun when enveloped by relatives and attention. “Where is daddy?”, is a question they had asked far too much in the prior two years – the youngest was not yet three. They did not seem to wonder today.

It ended in the best of ways. I understood better why David was so special, why Grace built a life with him, why the crowd was so full and why he and I could be pals in the next world. I am trying to accumulate fun contacts on the other side.

For now my plane flies above the clouds. The sun reveals that another new day without David is fully in process. Everything I see is peaceful and I wonder why it is that I have been taught to fear death.

much love, marcy

Journey With Cancer – The First Hello

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Journey With Cancer – The First Hello
Written 45 days after diagnosis (June 2010) and my first formal communication to friends and supporters. Adapted for broader readership in 2012.

April 20th, 2010 at 6 pm, I park on the side of an Oregon highway waiting for a return call from a doctor. It is gray. I learn that I have “advanced cancer” in a brief call. 36 hours later that diagnosis is refined to Stage IV Ovarian Cancer. There is no Stage V.

In the diagnostic roller coaster leading up to this call I have bartered endlessly, assuring myself of how accepting I could be of any diagnosis but cancer. Congestive heart failure, sure. Rheumatoid arthritis, easy. A fungal infection with a 25% risk of death, absolutely. I share my bargaining chits during various emergency consults where anonymous healers attempt to figure out why the lung of a healthy fit woman has collapsed. My negotiations fail to amuse a single doctor.

April 22, 2010: it is Earth Day and two days after that initial call. It’s also day three of the oil gusher in the Gulf; it’s the day my dearly departed little brother would have turned 43; and it is the day I am handed my formal death sentence. Any show of control collapses. I have drawn the shortest straw in my diagnostic bundle. My life as I had constructed it comes to a close. Crash, boom! Any illusion of free will has been replaced by the will to live.

It is 45 days later now. I have been coming to terms with my short straw. I see my job as using acceptance to construct a new life, however brief. In recent weeks I try on many faces including wise, gracious, funny and sad but I am never as genuinely sad as when I walk out of my Ovarian Cancer Support Group meetings. It is then I feel in the deepest pit of my stomach the very imminent reality of my death. God damn.

Feeling my death is so raw, unlike anything I have felt before. Thinking about my death stays a mere exercise of intellect – it is a removed and obvious truth that I can surely handle. Feeling death is so incredibly sloppy. Slow tears trickle out as I move towards a very different type of acceptance and grief. There is nothing for me to give permission to in this experience. Death is coming for me and it could be coming fast. In allowing myself to feel the reality of death, my stomach lurches endlessly, radiating out in cold, sharp spasms. It is as though I’m enduring a constant replay of the dream-fall when sleeping – the one where the stomach lurches and you are shocked awake at just the point you realize you will hit bottom. But this is real and there is no dream to awaken from. This is a Stage IV Ovarian Cancer diagnosis when you have suspended thinking and grasped Truth.

I am re-born in this free fall. I am re-born to the council of my medical team – “You must start living as if the next three months are your last. And when you are still alive at the close, make a new three month plan.” This is living with Stage IV Ovarian Cancer. It is a sneaky diagnosis that will allow me to look and feel great as the cancer makes its own decisions on longevity. It will decide which three months are my last. We will all find out together as the final three months dawn.

I believe I can do this. I will learn to live in three-month intervals. I will hope and dream and build in smaller allocations of time. But am I going to do this in my heart or in my head? In my head it is a mere storyline I can make interesting, wise and abstract. In my heart it is a constant tremor radiating from my stomach as I fall to my death several times a day or maybe several times an hour. I am offered drugs to derail the anxiety as I fall, but what do I lose if I take the edge off? And, if I don’t take the edge off, how will I get anything done or feel any joy or feel anything other than desperation?

45 days in to my new reality and I am bald. My signature long blond hair is gone. Catching a glance in a mirror is jarring, demoralizing. Why this overt humiliation now?

My house is also sick. It has been diagnosed with mold and so I am barred from entering because mold could kill me – an irony I try not to dwell on. My living quarters are reduced to a single room generously loaned by dear friends as they shower me with love, laughter and attention. My middle class American life has been whittled down to what will fit in a few bins. The bins taunt me with lessons of detachment. Must everything now be about preparing me to leave this world?

I have started to vanish. I can sense colleagues and friends, overwhelmed with the demands of their own lives, cutting me out of the day-to-day flow of work-based communication, so as “not to derail me from healing”. I crave updates about everything that formerly was my life. It’s been a mere 45 days and my erasure from the news of the day is underway. Does no one else see the irony of not distracting me from getting well? So many ironies at Stage IV.

There is so much more to acknowledge, like the bundles of love sent my way through cards, notes in the virtual guestbook, food and good reading material. As I free fall, kindness envelops me and cushions such a scary moment with light and possibilities. As we all struggle to find our best place in this very real drama please don’t fear making mistakes. Cancer is a mistake. Reaching out to me will never be a mistake.

I am lonely and scared. I am like a little Who from Horton Hears a Who — hanging on a thistle screaming out, “I am here, I am here, I am here.” Please hear me, love me and help me live this last phase of life as completely as possible. Just don’t rush my disappearance. Please.

Marcy Westerling
Oregon • June 10, 2010

I’m a kickass community organizer dedicated to the notion that small town Americana is filled with justice seeking souls that deserve support as well as have the power to bridge the false cultural divides of our times.
– Marcy Westerling