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

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

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

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What the Heck is Livingly Dying, Anyway?

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 Flight of Val

My friends,

 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

Welcome to Livingly Dying

Welcome to a space dedicated to the process of livingly dying – staring at imminent mortality and yet residing in the world of the living. More and more of us are finding the words terminally ill and chronic illness co-mingle. We are living longer and better despite a dire diagnosis/prognosis. But the path is not easy.

We bounce between denial, deep despair, and sheer optimism. All the while, many of us face treatment regimes that whittle us down and a current culture in the United States unfamiliar with sitting with death and dying. These writings will be of most value for:

a. people navigating the balance of living when told you are dying

b. people pursuing creative approaches, especially those stimulating our immune systems to fight back the diseases trampling us

c. people interested in witnessing one person living each day with terminal illness.

Livingly Dying Essays, Clinical Trial & Creative Approaches,  and Medical Industrial Complex Woes make up the three categories on the lower right column of the front page allowing you easy access to content that most interests you. To receive new posts click the follow button in the upper right column. I share my journey to support collective efforts to live well while dying. I am feeling my way out loud. Thank you for joining me. Comments are always welcome, in fact, they cheer on the process. If you scroll below this welcome, you will find the running narrative with most current post on top.

For those who like seeing and hearing more than reading, click for the YouTube film of me explaining the concept of Livingly Dying https://www.youtube.com/watch?v=365W0sJq8BE 

Alive! Four + years into the terminally living journey.

Marcy Westerling – marcy@rop.org

Expiration Date: an essay on Livingly Dying

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

Happy Holidays!

It’s December. Happy Holidays! I hope you are all well, enjoying the days of darkness and the promise of rounding the bend back towards more light with solstice.

My life is peaceful which I adore. I continue with my weekly chemo infusions, now over at OHSU which I refer to as my spa. It is a warm space to spend time – so much so that I rather enjoy my weekly ritual. The low, steady chemo dose approach is much easier to tolerate and even the projection that I would lose my hair seems unlikely. It is thinning (and I leave a trail of hairs as I move about) but not so much that I fear being bald. Small victories that I relish! I have added in fasting before and after the chemo in the hopes that it saves my good cells and targets my cancer for the toxics. Who knows. Each effort I make adds to my sense of possibilities.

Being a patient at OHSU is wonderful. It’s vibrancy exudes hope, whether for you or the next patient, but you can feel the hum of progress. I now get to experience a health team that is fluent on MY CASE. They seem to have systems that allow them not to appear wasted from an overwhelming workload. They are cheery and aware. And treat me like a colleague as well as the patient.

A favorite moment being when they asked me something about my confidence in the current treatment plan. My response included the intent “to be around until I am 72.” The doc turned to her computer without pause and said as she typed, ” well, thats a pretty important goal to get in your chart.”

I am moving towards testing with the exact dates yet to be set. I had hoped to stall until after the holidays but that may not work. Luckily, my blood tests indicate that I am responding to this chemo, although I need to remind myself that in this long 15 months of progressing while on chemo, my blood work showed I was responding, and I was. It’s just that I was also managing to grow new cancer. But with a 10 cm tumor surgically removed in October, the hope is that I have a head start this time.

The vaccine trial that we are trying to get me fully accepted in to awaits. Vaccines best hope of working is with patients that have a very low amount of visible tumor, ideally none. They are not equipped to disappear existing tumors. Their goal is to re-calibrate my body to be able to fight off future cancer deformities as they happen – like is happening in the bodies of the rest of you that do not have cancer growing. (Yes, you too have cancer, your bodies just evict it.) My intent is to go to UPenn regardless of what the scan shows and argue my case. That will likely be in mid January.

A hearty thank you to all who humbled me by attending my Livingly Dying reading on November 15th. It was lovely to see a standing room only crowd. My apologies to those closest to the door who stayed despite not being able to hear!

much love, marcy