Tag Archives: terminally ill

Off to the Bronx Riviera

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Not every infusion center lends itself to the vacation metaphor. The Bruckner Clinic is a little on the gritty end. And life-saving experimental chemotherapy cocktails have their own emotional and physical challenges rarely woven into the vacation experience but, hey, they are just barriers. In hours I fly off with my beloved for 29-hour infusion number two at (ok, near) the Bronx Riviera. Not bad, eh?

We are, actually, excited. We may not get a chance to frolic on a beach but we will get an adventure, time in the big city and time together. IMG_8714For those of you who do get to vacation in the Bronx, send us a postcard from Orchard Beach; we are curious.

I have felt strong for almost a week, my belly feels significantly less full of surging cancer and I am ready for round two.

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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.

Goodbye Avistan and Final Scan Results

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The final results of my March ct scan are in, the RECIST read. The radiologist contracted for the deeper read for this trial signed off on my scan as “no disease progression.” In fact, there was some reduction of disease in the abdomen. I am still trying to get answers about the pericardial effusion but the doctor is out until April 10th so I will content myself with everyone else’s lack of concern! Actually, they see the enlarged lymph nodes as a possible indicator of my immune system fighting per vaccine intent.

Why does my marker steadily rise? How to understand the aggravated lymph nodes and fluid around my heart? For now they are simple reminders that I am in a Phase One Clinical Trial trying to teach my body to fight back my aggressive ovarian cancer. There are many mysteries in this process.

I sometimes feel like the boy in the hills crying, “Wolf.” But the purpose of this blog is to make real life with terminal disease – constant testing, relentless waiting and then unclear results are a significant, routine burden.

The roller coaster of disease ups and downs, engulfed in bigger woes.

The roller coaster of disease ups and downs, engulfed in bigger woes.

For most of 2013 testing was relatively easy because my marker was so stable but as the marker rises, my friends and I with terminal disease find we wait for the other shoe to drop. Stable pronouncements don’t calm as much as they should. But I am determined to accept this news as is – good!

Other news was unexpected. I need to stop taking Avistan, a core drug in the trial, because I have moved into an unsafe range. UPenn is rewriting the maintenance protocol in the hopes that the external review bodies will approve my staying in the trial. I don’t have anxiety about what happens. (My lack of anxiety is also because I am assuming that I will be able to go back on Avistan eventually or still opt in to the Part Two T-Cell Phase when relevant if I take a break from the drug now.)

Avistan is the drug I dragged my heels on starting for 8 months. I was supposed to start with my first recurrence in Autumn 2011. For months I stalled, often calling off the start in the final week even while knowing how lucky I was to have access to this incredibly expensive new drug that many countries and insurance companies refuse to pay for.

I distrusted Avistan for my own hard to justify reasons. It is actually not a chemotherapy agent but rather a “biologic” that works to cut off the blood supply to existing tumors, killing them. When I first started treatment back in spring 2010, I started in a Phase Three Clinical Trial where 2 out of 3 patients were given a trial biologic anti-angiogenic – I still don’t know if I was in the placebo arm or not. It was the marketing overkill, price tag and current reality of what it takes to bring a drug to market that fueled my distrust as well as the rumors that those of us who took the miracle drug got short term payoffs but when the cancer learned to go round it, the result was relentless. I took those rumors to heart. And it is a drug too new to even be approved for ovarian cancer or for anyone to know that proper dosing or use of.

The UPenn team really believes in Avistan and that has lessened my fears. I have now been on Avistan for over two years and my body has gradually been starved by protein being spilled into the urine. Now, I am at grade three status and the risks are too dire for my kidneys. Avistan’s side effects always kicked my butt. Maybe it was payback for my reluctance. Unrelenting nose pain and ever increasing headaches lowered my daily quality of life. I feel joy as I imagine approaching relief of these big discomferts. Ahhhh…..goodbye Avistan for now.

Thank you, dear readers, for staying with me on this roller coaster of disease. I enter a new year ever hopeful! Happy birthday to me.IMG_4850_3

Letting Go

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Have you been swept up in the recent brouhahas debating how dying people should close out their lives – loudly versus quietly? Two doomed women have triggered voluble discussion in their separate determinations to live longer. They share being younger and skilled in amplifying their voice. Being loud has been a part of their strategy. They enjoyed full lives before and during their years with terminal cancer. One has since died, the other struggles mightily in a hospital.

The discussion has not been amongst the dying but rather largely amongst those still living lives of good health. Frankly, columnists needing to find a topic launched much of this with plain poor manners.

Andrea Sloan, typical of many advanced ovarian cancer patients, had no more FDA approved drugs to contain her cancer when her doctor indicated she was a molecular match for a new drug still in clinical trail. She couldn’t access the clinical trial so she organized a team, Andi’s Army, to petition the drug company via public outcry to grant ‘compassionate use’ of the drug. It was denied and she died within four months of her campaign start.

Lisa Sloan campaign for access to drugs

Lisa Sloan campaigning for access to drugs

Lisa Adams suggests no policy changes I know of, she just tweets and blogs her experiences as a lab rat for her cancer, saying yes to whatever seems plausible to keep her alive longer with her young family. She has quite a following indicating appeal.

Lisa (left) in the hospital with her doc

Lisa (left) in the hospital with her doc

I am also rather loud in my living with cancer just as I was rather loud in my pre-cancer life. Whether astrologically flawed as an Aries or for some other reason, I share my reality and am persistent in my medical options. It is not wrong or right.

I watch another cancer sister move into the end zone with her disease. She is as contained as ever. She suffers quite a bit and understands there is no turning around where her cancer is heading. She is actively dying despite still being in treatment. Why, I wonder, have none of my local sisters chosen Death with Dignity, legal in Oregon. But I wonder to better inform my own choices not in judgment. When in my own dying process, let alone how, will I finally let go? Physical pain can be more tolerable than saying that final goodbye, I suspect. I think the terminally ill have few judgments about how to die, we are busy enough keeping our heads above water. Watch us or not but don’t judge.

There is 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.”

I awoke this morning to an hour of Martin Luther King, Jr’s voice. His speeches are always humbling and inspiring. The hour closed with his final speech before being assassinated. In it he referred to being stabbed in the chest and the knife missing his aorta by the merest of slivers. Doctor’s noted, and the press repeated, that if he had sneezed prior to surgery the knife would have shifted enough to kill him. A little girl wrote in his favorite letter, “I am glad you didn’t sneeze.” May we all avoid a fatal sneeze today and feel gratitude for the choices we are allowed.

A Leader

A Leader

A Big World Made Smaller

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Where are Jersey, Tobago and Ghana?  Courtesy of Wikipedia I find answers. Unknown

A. Jersey is a British Crown dependency just off the coast of Normandy, France.
B. Tobago is located in the southern Caribbean, northeast of the island of Trinidad and southeast of Grenada.
C. Ghana, officially the Republic of Ghana, is a sovereign state and unitary presidential constitutional republic located on the Gulf of Guinea and Atlantic Ocean in the Africa frontier of Sub-Saharan Africa.
There are people impacted by cancer in each of these locations, not surprisingly, alas.
       My accuracy in geography is weak. A shower curtain world map entertained me for years but I still failed to orient myself much better. It is a big world with almost 200 countries, shifting borders and new names. What I know is that everywhere on this globe matters, as does each individual. And that everywhere there is life there is also cancer.
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       I set up the blog LivinglyDying in June 2013 motivated to share my experiences participating in a Phase One clinical trial. The fact that it was an immunological trial at the top rated University of Pennsylvania with early promising results meant it was on the cutting edge of possible cancer breakthroughs. Ovarian Cancer has not seen a shift in its mortality statistics in 30 years – any breakthrough would be a big deal.
       I did not enter this trial to be a good citizen. I entered it as my best bet for staying alive awhile longer. Such self-centered motivations did not mean I couldn’t ‘share the wealth’ by adding a public communication loop. I set up a blog during a week when acute hip bursitis had me able to do little. It was a distraction versus a well thought out new project.
       I make an effort to post weekly, be modestly engaging and use different content angles to meet the varied interests of readers. Friends, family and colleagues were the first to enroll, motivated to track my progress. I wanted content to be good enough that they might share the link with other’s coping with mortality or cancer or just the wonders of life. As the tagline indicates, the blog promises “notes and essays on daily life with terminal cancer.”
       I learned about blog culture and the excellent tools that WordPress provides so that innocents like myself can build a platform that is read. Little by little, I was found. (I am still waiting for The Post That Goes Viral to bring me instant fame as was so well made fun of on Showtime’s series The Big C. The truth is many, many people blog and many, many people buy lottery tickets – the odds of making it big are not in your favor.)
        I stay mesmerized by my stats page which allows me to study not just the number of visitors and the different places on the site where they spend time but also which countries they call home and what entry points allow them to find LivinglyDying. I am often amused to find search terms like ‘Marcy Westerling’s Obituary’ as the connection to the blog. (Yesterday someone entered ovarian cancer party supplies and found the blog!) More common are search term entries like today’s query, ‘I am dying of cancer’.
       Most of my visitors stumble upon the blog in desperation – they have received their own terminal diagnosis and they want to feel less isolated as they learn how to cope. People from 58 countries including Jersey, Tobago and Ghana have spent time on LivinglyDying. There have been over 13,000 visitors and while that still ranks me as a small potato blog, I hope that in the five months of my blogging visitors may have found some support and useful information.
       Thank you for being readers, for spreading the word. If you are healthy, thank you for being brave enough to co-mingle with those that are not. For those consigned to this sorry path of terminal illness, thank you for reaching out and for suspecting, as I do, that there might be some magical power in being connected and in being emboldened by the notion that in 2013 we can be both terminal and quite lively and that maybe, just maybe we will see our illnesses become chronic versus terminal in our lifetimes, especially if we can make the world a little smaller, share our resources and make every person and every community counts.images-1

End of Study Results: Great, Decent, or Just Sigh

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It’s been 3 ½ years since my terminal cancer diagnosis and I still hold out for the letter clearing the whole misunderstanding up. “Ms. Westerling, we apologize for any confusion. It seems like we got some images hooked up with your case file that were just, well, wrong; you are fine. Have a good day.”

My friends are ready to celebrate good news but the only good news I want is a full and complete retraction. Anything else feels like celebrating a delay in the inevitable. I know this attitude makes me an ingrate so do me a favor and don’t spread the word that I am unsatisfied.

This morning I finally tracked down my phase one end-of-study results. The lead up looked promising and I assured myself that the delay in the final details didn’t matter because, clearly, I am trending in the right direction. But judging by my response to the official ‘good news’, I was holding out for better.

Would I have been happy for the best-in-show possibility of No Evidence of Disease (NED)? A result that never denies that microscopic ovarian cancer is floating about. Or would any result in this relentless new life path of staying alive despite cancer have reminded me of how harsh this life path seems. (Psst, I want my old life back!)44678_258047887658324_1806155451_n

A growing debate gained volume this summer over relabeling some types of lesions out of the cancer lexicon. It lead to some juicy headlines that crossed my screen. Maybe in lieu of the letter I imagine arriving any day now, I could just rebrand my cancer. But that hope was dashed as well.

Now that I have had my wail, I must recalibrate to the small miracles that I am allowed. They add up. They extend life. They are worthy of celebration. My job is to adapt.

The End of Study results show that my volume of cancer has decreased but remains visible. The best I can get towards quantifiability (is it the size of an almond, the head of q-tip?) is this – I entered the study with a volume of 405, now I am at 44, a hefty and measurable drop for my loved ones to celebrate. I might just need a few days to stay grumpy at the 44.

In the meantime, Herman Wallace, after 42 years in solitary confinement, is released to die as a free man. Wallace2He is in the final days of liver cancer. What seems a bittersweet victory might be much bigger for him or so I hope. I wish him an end in some lovely, sunny field surrounded by the many who stayed by his side over the four decades rather than the hospital he is liberated too. But mainly I hope that breathing in his final breathes as a free man heals the hurt of injustice. And this I will celebrate.

Keeping My Past Afloat

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The closing phase of life ideally includes time for reflection. Imagery of elders rocking on shaded front porches as they share stories of years gone by seem right, whether or not current society actually allows or encourages that. Terminally ill, albeit younger, I find myself reflecting more on my past, enjoying the memories.IMG_0229

But I have not enjoyed the past breaking through into my present this July. Instead of rocking, I was called to action – stressful action. Not only did I re-inherit my beloved houseboat, home during my late twenties, thirties and early forties but also it threatened to sink me. This glorious home that looks so wonderful was catastrophically ill below the water. There were other woes after almost a decade of no responsible parenting and constant movement on the river. I needed to sell and I decided I had exactly 26 days in which to do it. I was not going to pay August Moorage fees.IMG_0235

It led to a stressful month as my reasonable asking price became less reasonable as clarity grew that this home needed a buyer with $50,000 + for upfront repairs. I sold it today for $5,000 – a bitterly wrong sum. But I needed to be done with the stress of this house capsizing on my watch and then having a huge financial burden as it was salvaged from the river floor.

Living on disability during what someone called ‘my prime earning years’ does not make me flush. Commuting cross-country for medical care is an additional burden. (This clinical trial only covers actual treatment costs.) It would have been lovely, and appropriate, to sell this home for $89,000 or more.

But the stress is gone. And it is now August. I intend to return to some rocking with the best of memories as companions. Priceless.

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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

Welcome to Livingly Dying

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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! Three years into the cancer journey

Alive! Four + years into the terminally living journey.

Marcy Westerling – marcy@rop.org

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

Dancing and Thinking Out Loud

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Monday, July 30th , for better or worse, I will be profiled live in the second half of Oregon Public Broadcasting’s Think Out Loud.  If you go here http://www.opb.org/thinkoutloud/shows/marcy-westerling/ you can even pose a question – ones that bring it back to rural organizing are valued.

Marcy Westerling

AIR DATE: Monday, July 30th 2012

POSTED BY: JULIE SABATIER

At 53, Marcy Westerling is taking stock of her life and legacy as a community organizer. She’s also making tokens for her friends to remember her by. Two and a half years ago, Westerling was diagnosed with terminal ovarian cancer. She says,

“I can accept dying and dying young. What I’m less OK with is disappearing…I want to be a mentor for younger organizers and allow myself the gift of feeling like I’m going to be carried forward even though I don’t have control over how long I’m here.”

Westerling is probably best known for founding the Rural Organizing Project (ROP) in the 1990s. ROP is an advocacy group focused on sexual and racial minority communities in rural Oregon. She’s stepped back from her leadership work at ROP, but she remains very involved as a both a mentor and keeper of the group’s institutional memory.

Do you have experience with the Rural Organizing Project? What would you like to ask Marcy Westerling?

While the OPB show might be fun, what will be much more fun is a dance party slated for Saturday, August 18th.  The best DJ is donating his time and great food and beverages are being lined up.

A Summer Dance Party! Save the date – share the invite

To benefit the Rural Organizing Project & all our psyches

Hosted by Marcy Westerling* & Cara Shufelt

Put on your dancin’ shoes because ROPers and urban friends are gonna dance the night away in Cara’s backyard!  (With great food and drinks and music.)

When: Saturday, August 18th 6-9pm

Where: Cara’s Backyard:

What: An evening party to mix & mingle, hang with ROPers & Marcy, dance the night away to a live DJ and support the work of ROP!  Great tunes and good times.

* special note:  I will be getting my inside look scan results the week prior – these determine if this chemo is working after a long year of limited success in containing my cancer.  So, you can well imagine that dancing, if the results are good (please!) or bad (wah!), will be very, very therapeutic.