Good Deaths, Good Dying

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.

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.

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Facing Chemo – A Personal Perspective

I was asked to write the below this week. Done, I am now attacking my work space, an intimidating task as I hoard EVERYTHING just in case it could be used in a future project. I want clean. I want work surfaces. But my evil twin brings home every tossed aside item I come across. This cleaning of the art space is a soulful negotiation between my two selves.

beloved clutter

So rather than write a new blog post, I share what I just wrote for something else, hoping it just might serve a purpose here.

Spilling out on to the floor!

warmly, marcy

Chemo: How I Faced It, Tips I Might Share – A Personal Perspective

A photo documents me beaming out as the very first chemo drip started. My long hair, a source of life long pride, was having a good hair day. A table was laden with healthy foods and drink. I look strong and hopeful. The truth is moments later I asked everyone to leave, turned off the lights and I lay there crying the slow, quiet tears of defeat that seemed to befit a younger stage IV ovarian cancer patient.

My six frontline chemotherapies were pretty standard. No real crises outside of the ongoing saga to find a willing vein. Oh, to have had the starting wisdom of a port! Eventually I got “plugged in”, infused and left, counting off one more chemo treatment until they were done, as was all my bodily hair, and I walked out to build a life in remission.

I approached frontline chemo as an endurance test. I rigorously took notes and followed them attentively. I started a “blackout period” free of all supplements and green tea the day prior to each infusion that lasted for the two days after infusion. A support team coordinated having food available and people to look in the days I would feel the sickliest. The days, in fact, when the last thing I wanted were visitors. They were assigned to bring a book and leave me be, that is if I didn’t head them off before arrival with assurances of just how fine I was. Compared to the horror stories of imagined chemo, I had more good days then bad albeit always weary in a newfound way. I walked every day. I ate well. I enrolled in a local clinic for immune deficient people that offered weekly treatments of acupuncture, shiatsu (Chinese massage), and access to a cancer-trained naturopath who assigned supplements that my Western team of medical experts then approved me to take. East met West courtesy of my body.

I was recovering from surgeries to my chest and abdomen and the news that I had one of the worst cancer diagnosis imaginable. Shock, grief and a raw primal fear I had never before experienced were daily components of my initial reality. The routines of chemo survival helped me by being concrete.

My husband and I moved in with friends in the city when it was obvious I faced a huge medical phase. This decision allowed us to under-function initially as friends took over being the competent leads. They told us what to do when. This allowed us space for walking through our emotions. Living with friends infused such a sober period with joy, love and laughter. I don’t know how we would have handled this same crisis at our beloved home in the woods but I suspect the increased isolation would not have served us well.

Four years later, I am a chemo pro. My port is a dear friend and I have different tactics for the different chemo regimes offered up. My life is good; I look healthy and bike or walk everywhere. I feel strong and hopeful most of the time. I have pride in a new head of hair even if shorter.

Camp Mak-A-Dream

“No, No. Don’t make me go!” pretty much summed up how I felt as I lined up my gear for departure. I was stuck. I had promised to attend, a slot was held and my gentle husband expressed rare firmness as he guided me to the door. The rental car arrived and I was on my way in a snappy red car. My mood improved within minutes and I knew the decision to take this solo quest across four states, 700 miles and a vast, low population region to gather with other ovarian cancer sisters from across the country was more than sound.

Camp Mak-A-Dream was my destination. Originally designed for children with cancer, it now adds in sessions for women with ovarian or other (non-breast) cancers – an under-served population. I have enough friends that are camp zealots to apply eventually for one of the free slots (It’s all free!) even though I was reluctant to attend “camp.” Would it be one more humiliation in my new norm – life in cancer world?  But the new norm is all about letting go of ego; few of us make it through frontline treatments without losing control of every possible bodily function. Hairless and facing death, you are challenged to let go of all presumptions about what makes you important.

Nonetheless, choosing camp over an annual gathering of my organizing colleagues seemed a harsh statement. But I went to regain my groove.

Diagnosed in April 2010. Recurred in October of 2011. Still in my first recurrence two years and seven months later, it seems that I am now taking a rebuilding break from treatment to test my body. Rather than just staring into the endless abyss of treatment towards death, I am committed to re-entering the world of living. I wanted the daring of a twelve-hour drive alone through such a massive landscape to remind myself of freedom from treatment. Where better to re-prioritize my life then with a group of sisters who need no back-story.

I arrived a day late to a room full of women partying hard and yet quick to abandon their fun to greet me. I settled into my assigned cabin, found the Art Barn

Marcy’s Camp Craft

and, once oriented, bedded down to ready for a full weekend of activities. Time to climb the climbing wall, ride horses, zip line, attend a sex discussion for women living with hacked into bodies, screen the most excellent movie N.E.D (No Evidence of Disease – the rock band of GYN-Oncologists committed to giving solace to those living with disease and educating on symptoms.) And more….

The landscape is lovely. The camp is built around a subtly steep butte that we are all challenged to climb and we do, at paces that befit our bodies’ status, but no one avoided the challenge. Impressive indeed.

The staff and volunteers create a culture of cheer. It is a cheer that pervades the camp but never crowds out the awareness of mortality each women carries, the 18 deaths of campers in the past year are honored, the women in current crisis or hospice are talked about and tears of sadness blend in well as we exchange treatment realities and hopes. It is a setting of Livingly Dying.

I will close with what I loved most – the women supporting each other with mirth and attentiveness as we took on the challenge of rebuilding confidence in life. The zip line requires that you step off from the tree house ledge into open air. That step is huge. Some women froze as the minutes ticked on. From below we would cheer, reminding the temporarily stuck person that this was nothing compared to what we have already lived through – we cheered for however long it took. And then we each jumped into the abyss of life.

It’s hard!

The Philly Chronicles – Trek Four, Part A

Monday (6.3.2013) dawned gray in Portland rather then kicking off the predicted suite of sunny days. The forecast had been revised overnight. I have yet to give up trying to control the weather, a habit I developed upon moving to the rainy part of the Pacific Northwest. The rain is fine, the gray can be gorgeous but my disposition is for sunny and warm – I never tire of it.

May weather was especially harsh to accept after a remarkably dry and blue-sky winter and spring. This May ended up being the third wettest on record. And cold. The nation suffered big weather turmoil while we just coped with the grumpiness of winter weather in spring. So yes, I counted down to my one sunny Oregon day before bidding goodbye to fly back to Philadelphia – more planes, airports and hospitals in store for me. The sun did sneak out albeit a few hours late. I thrilled in its arrival.

Between chores outside I toured the different nooks that make up our small urban homestead. I love to greet the flowers, their beauty deserving a small shout out. I am less outgoing with the vegetables and fruits, the exception being our young apple trees promising an actual crop this year. We moved to the city when I got my stage iv cancer diagnosis three years prior, leaving behind our dream farmstead with my flock of ducks and the ever expanding orchards and growing beds my husband fed us from. We planned to grow old there. We lost several dreams with the arrival of cancer.

I never really went home post diagnosis. Dear friends literally met us at the emergency room where doctors were puzzling out my collapsed lung. It would take a week for diagnosis but after removing liters of fluid from my chest, they whispered in the hall to these friends that, ‘there was never a good explanation for a collapsed lung.” We stayed with these friends that rocky April filled with all hours of trips to emergency rooms and then the pronouncement of terminal cancer. We stayed with them in an ad hoc guest room for the duration of front-line treatment. It insured care and laughter during a bewildering few months for my husband and me.

With the cancer diagnosis I committed to staying strong and for me that meant easy (aka biking) access to medical and complimentary care and, frankly, the busyness that a city offers. Depression seemed a secondary threat. It was time to say goodbye to the greater isolation and distances of country living.

Our new home, small and perfect with a decent allocation of land, steadily took on the shape of our revised dreams. Two vegetable beds were squeezed into the side yard, then three on the sidewalk meridian, two community plots acquired nearby and the expansion continues, a source of shared delight. I know every square foot of it very well.

Monday, soaking up the sun in preparation for my flight, I discovered a hidden treat. We had pruned out some trees blocking the southern sky last winter, now rewarding the effort was the most subtle and stunning iris blooming where a few trillium lounged months back. I took a photo to take with me on my travels.

I start this trek (Tuesday – 6.4.2013) with excitement. Finally, I begin the multi-day process of treatment in this phase one trial. A chemo cocktail of cytoxan and avistan day one, vaccines to the groin day two, and for this first cycle – blood draws every 12 hours for an additional day. Then home where I hope the sun and the iris will still be holding court.

I travel with Roxanne Cousins. She died earlier this year at age 40 leaving a young son to do his best with memories. Roxanne and I both worked hard to qualify for this trial, sharing notes and encouragement along the way. After surgery she was told that she didn’t have enough volume to meet the damn criteria. She was determined to try again; to get in this trial; to buy some more time with her loved ones. The cancer claimed her before another surgery could happen. I pledged to keep her spirit with me in a trial that is too early on to promise miracles but those of us with ovarian cancer just seek time extenders.

The Sunday N.Y.Times (6.2.2103) covered the interesting challenge of HIV patients in the U.S. once short tracked for death while often in their 20s and 30s, the miracle arrival of their own cocktail and the problems they now face of aging after decades on treatment. They featured one such man who was extremely close to death when the call came about ‘miracle pills.’ Within weeks he was gaining weight and mobility. Decades later, he lives. What a concept. Imagining that process occupied my mind. Of course, he couldn’t know it was a miracle at the time but must have considered it as a weak possibility. How long did it take him to accept this drastic change of fate? Could he ever revel? Does it matter?

What terminally ill person has not awaited a clarifying call in the months after diagnosis offering a reprieve? “So sorry, but you really have this other more benign calamity to contend with.” I met a woman who got such a call – it only changed her from a stage 3c to 2b but in the terrain of hope that is huge. With this trial I enter the terrain of hope.

Part B to follow shortly…

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

The Gift of Community

It is cold. There is a tiny coating of white stuff on the ground. I sip my tea and watch the chickadees at the feeder. I enjoy the quiet of a January malaise much as Chris E. delightfully described it back to me after reading my last post. “She sounds like a pretty French girl who urges you to rest. That can’t be all bad, but I bet she can be a bore!” I love that she saw malaise as a neutral reality – well timed for a winter when treatments accumulate. I gentle awake my poor naval cavities being re-carved by one of the drugs I am on. It is a peaceful start to a deep winter day in the pacific northwest.

There is an uncharacteristic thud at the front door. Clearly, the mail has arrived but why such noise? I dont rush to see but am heartened when I get there to find some big mail items for me – me. Hmmm…..what perfect timing since I am expecting nothing and the holidays have passed.

It is a binder and a soft, tissue-wrapped something. I open the binder and realize that I must sit down for this. Something special is happening. I feel enveloped in love as I wander through the binder pages of cards and art. I move to unwrap the tissue – the clothe prayers unfold themselves with the weight of love and hours. I am a crafts person so I know what each square represents in dedicated time, frustration and fun.

I spread them out in across the living room carpet and want to call Mike home from work to share this moment but I know that a day alone with these prayers will be far from lonely. My thanks to all who were able to participate in Binnie’s Iowa brainstorm of caring. I know exactly where they will hang!  xoxo

Updates

Thanks for bearing with me during the very hard months of August and September. I must say that my October, which kicked off with surgery, has been great! Being back in the embrace of treatment allows me to decide that my cancer is being disappeared. My next internal scan could have been as early as now but it is now scheduled for late December/early January and that thrills me. My costume for Halloween will be that of a woman without cancer. (Oddly enough, that looks just like me! Note photo above where both Holly and I are in costume.)

Updates:

Melting Matilda, my remaining tumor being named Matilda, (to the tune of Waltzing Matilda) is my current theme song.

My extracted tumor qualified for UPenn by having more than 100 million cells. It took a full year to get to this place! The next steps start in January with the scan and then a trip to Philly (anyone have frequent flyer miles they are desperate to get rid of?) I would sign paperwork that day *if* my cancer is stable and shrunk and I pass other modest tests. Then two weeks later I would be back for a rather invasive process that harvests dendritic cells from my white cells through a dialysis like machine to allow final production of the Marcy Westerling Vaccine. Two weeks to a month later I am back for the first vaccine treatment! I would have a minimum of 5 trips to Philadelphia so you can see why the donated miles will help. I am also checking out free rides in corporate jets for cancer patients. (I know – too funny.)

My current chemo regime is weekly and low impact but there are also unknowns as I am early in the process and a second drug should get added in next week. Will I lose my hair? Place your bet – half the providers say yes, half say no.

My transition from Kaiser to OHSU should happen this week. Honestly, I still do not know if it will happen. Tuesday or Wednesday I will make the final call to see if the incredibly cumbersome process of getting accepted by a prescription drug plan is complete. (For some reason they could not check the right box that allows an under 65 year old to transition plans in their entry window. Medicare can inform me that they messed up the submitted form but since medicare cant talk to them or vice versa – dont ask me why – being right has little value. So I reapply and again they dont check the right box. Really! Since I have a November 1st intake appointment at my new provider and need chemo election day a resolution happens this week be it Kaiser or OHSU. No call today so I am hoping that they finally found and checked the right little box.

Many of you have been very generous with care packages of late. You got me through a hard time. Now you can save them for the next hard moment of testing. I truly pray that after 15 months of recurrence treatment w.mainly bad news we get a little break in the clouds – disease reduction and clearance for the Hail Mary pass to kick off 2013! (And decent election results….)

And lastly, for those in driving distance to Portland I am doing a reading at a local coffeehouse on Thursday, November 15th from 6:30-7:00.

Marcy Westerling will read from her works on Livingly Dying, a phrase borrowed from the late Christopher Hitchens.

While the content may not seem like date night material, it will be an honest chance to walk with one woman as she faces a terminal cancer diagnosis – including the positives of having a husband and community that walk every step with her.  Cancer is epidemic and dying is a given for all who enter this world.  Why not look behind the curtain for 30 minutes?

They have seating for 50 so please spread the word!

Rain or Shine Coffee House is a bright, cozy space at the foot of Mt. Tabor. 5941 SE Division St -
Portland, OR 97206

1st Recurrence & 3rd Chemo Drug Tried

This morning the wedding ring came off.  It wasn’t an easy process but it was time.  The finger is swollen and everything chafes these days.  I have dubbed this chemo the chemo of 100 indignities.  I started by calling it 1000 but really, 1000 I eventually wondered.  Why exaggerate?  It’s the first time I have felt my body a form of entertainment as I never know what indignity will show up with the start of a new day.  I am a science experiment, at least to me.  The indignities are small but add up.  Most wrong of all they have thrown me back into migraines that had all but disappeared once the surgeons claimed my ovaries two years ago.  After living with migraines since age 12 it seemed the gods had their own sense of decency – we will give you metastasized ovarian cancer but relieve you of the chronic burden of migraines.  You will not be given more then you can bear kind of thinking – well, that honeymoon seems terminated.

So, I continue with my 8th month of non-stop chemo (and 2 years with 22 infusions thus far – a lot by any standard) with my newest drug doxil aka the red devil. It drips in you an actual orange-red adding some rare color to the infusion room.  I wont know until August whether I am approaching disease stabilization, the goal.  I am not looking forward to that test.  This next infusion I add in an additional drug every two weeks, Avistan.  I have swung wildly back and fourth on starting this drug these last 8 months, agreeing to it just to cancel a day or two prior to its start.  This time I wont cancel.  I am resolved. Technically I am lucky to have it offered to me since it is not officially cleared for ovarian cancer yet by the FDA (and they just revoked approval of it for breast cancer – a non confidence booster…but that is cancer care in 2012 – one crap shoot after the next.)  Starting Avistan probably means that I will never go off chemo, which just clarifies my status in another uncomfortable way.  And it is notorious for it’s own, more dramatic, set of side effects.

All the above is very real to Mike and me.  And yet we plod forward with relative ease and happiness.  We have another community garden plot, this one an actual block from our house. The front and side yards are filled with growing space and another garden will be added this summer. Growing is a belief in the future. Growing is accepting life cycles.  Our newly added jasmine releases its fragrance today.  I have finally gotten back to quilting after a two-year creativity stall.  Often our biggest worries are the same mundane ones we all face – can we train the cat not to wake us in the night, where do all the dirty dishes come from, why is it raining again?  

Perhaps, though, we live with gratitude more ever present.  For 14 of the last 24 months we have relied on meals dropped off once/week and other gestures to keep us going.  I am sure the stalwart ranks could use some new helpers.  If you are game to sign up and give someone else a break contact Holly Pruett who runs the lotsofhelping hands site – email her at hollyjpruett@gmail.com.  Please know that every one of your kindnesses is deeply appreciated.

love, as always, 

marcy

p.s.  Cynthia Nixon, the actor who is famous for her role in Sex and the City and who just finished playing the lead in Wit on Broadway, compared her own breast cancer to her character’s ovarian cancer like this:  “It had the same name,” she said. “But a cat can be a kitten or a mountain lion. They’re both cats. That is, ovarian is much more ferocious.”  The woman who shared this quote found the comparison very useful because she feels that most people who don’t have experience with cancer assume they’re all pretty much the same.  I am not sure they really are that different – what matters is stage at diagnosis.  But since ovarian is almost always diagnosed late we are ferociously occupied.  And, of course, pathetically under researched compared to other cancers. Don’t forget early detection depends on you – listen to your body and the small discomforts that PERSIST for more than 11 days in any calendar month. 

Partying in the Face of Mortality

Thank you to everyone who made last Saturday night so special! I would say more but I am still too wiped out. (It will be nice when the post chemo fatigue fades.) Anyway, a long time ROP supporter and friend wrote up his reflections on the day and night – I share his words in lieu of my own. If only he had stayed for the great dj’d dance party at the end…since his narrative didn’t get that far, let me just say, it was great!

“If I were designing a dream event for activists as a holiday gift, it would have looked a lot like the ROP Roots and Wings Celebration. The afternoon brought us the gift of four incredible allies of ROP from across the United States (Tarso Ramos of Political Research Associates based in Boston, Eric Ward of the Center for New Community based in Chicago, Scot Nakagawa from Mexico and Suzanne Pharr from Tennessee) sharing their more than a century of experience in organizing and upholding the values of democracy and human dignity with us. The format of two speakers followed by reflection at each table and then questions turned it into an active process and one that deepened the connections of the people at their tables. As one board member put it the only better thing would have been spending a day with each of the speakers. Like a chocolate cake that’s too rich to eat at one sitting. And then, of course, Marcy (at her Marcy-like best) drawing out the lessons from the speakers and the analysis into a set of questions, a plan, something concrete to take back to the spiritual barricades to guide our work. That would have been a great day… but we were just getting started.

The evening program to honor the roots (including Marcy Taproot) and wings of ROP’s gave us an even deeper place of reflection and connection. Okay, it has been known to happen that when you get together to do a celebration/fundraiser thing people say nice things about each other, pump up the crowd sort of, raise a little money and then you go home. This is not what happened. Honoring Marcy, of course, made it special. And celebrating her continued presence among us raised it to a higher level. Her courageous (sorry Marcy) struggle against cancer on behalf of life, including her own, simply reminds us of the preciousness of what we are fighting and loving for. It matters. It’s precious. So this made the evening special, but it was more than that. The people who have built ROP over the last 18 years love each other. Staff, board members, community activists. ROP has given us the chance to do that by bringing us together to take on struggles small and large… together. Through the campaigns, the caucuses, the phone calls and the visits ROP has done something that social media can’t. It has created a family. And that was what made this evening special. It was family coming together after a day of work to look back on what we’ve accomplished (against long odds) and what we’ve become and forward to where we are going next. Everyone who spoke, spoke from the heart, not from notes on a napkin. Like the Velveteen Rabbit, after all these years and taking a few hits, we’re real. We can talk to each other from the heart, as if it mattered.

And all this against the backdrop of love and deep appreciation. And we noticed that over the last few years we’ve grown as an organization, that we’re able to support each other in ever greater ways. That the new leadership is brilliant, powerful and committed, just as the old leadership was. We’re in it for the long haul. Good things don’t get lost, they build up, like rain in the clouds over a parched desert.

So, if I were designing an event for activists, here in the winter of our discontent, to strengthen us for our work, it would have looked a lot like this.”

With love,

Jerry Atkin