Tag Archives: diagnosis

Now, How Did We Get Here?

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

In my own words…..Marcy Westerling

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

Speaking against wars at home and abroad

Speaking against wars at home and abroad

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

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

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

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

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

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

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

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

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

The happy couple 2009

The happy couple 2009

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

Our home at the pond

Our home at the pond

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

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

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

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

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

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

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

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

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

The happy couple 2012

The happy couple 2012

Treatment Summary

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

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 Philly Chronicles – Trek Four, Part A

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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.photo

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…

From Plodding to Zeal

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Monday, March 25th was my actual birthday and what a lovely day it was. Quite simple and easy, but with the addition of warm and sunny weather, MARVELOUS! Thank you for all the varied greetings.

Since energy is a big challenge these days and because I am determined to dance at Saturday’s dance party, I am trying to do very, very little this week. (Plus, I fly off to the east coast early Monday morning which demands even more caution in my current schedule as travel is exhausting.)
Three years ago my chest cavity was filling with migrating cancerous fluids collapsing my lung. April 4th 2010 I could barely walk into the ER my breathing was so limited. This April 4th my assignment is to prove just how fit I stay despite three years of cancer treatments as we convince the UPenn docs to accept me into their competitive trial.
Three years later we are still celebrating the marvels of being alive while accepting how tenuous it can be. It is perfect that Saturday’s party is both a hello, as I connect with friends from varying stages of my life, and a goodbye sendoff as I get ready to start my east coast adventure in extending my life.
Thank you everyone for contributing to my still being alive on this glorious planet.

Two Years and Counting

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

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

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

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

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

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

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

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

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

much love, marcy

Early Detection – Delaying Mortality

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In the world of cancer, a land 1 in 3 people will visit in their life time, the stage at detection determines whether it is a minor nuisance or the close of life. There are only four stages.  I was diagnosed at the fourth stage otherwise known as metastasized, advanced, systemic or end stage cancer.  None of the stage IV descriptors are meant to sound good.  But early detection, now that is good.

February apparently is early detection month – this is my contribution to that effort.  (It is also black history month – African-Americans are disproportionately impacted by cancer in this country mainly due to less access to medical care.)

Ovarian cancer is known as ‘the silent killer’ but most cancer functions silently.  Abnormal cells start growing, are not evicted, create a mass, travel around and at some point they get big enough to create a secondary problem.  Big enough is often too big.  There are over 2000 forms of cancer and trying to be on top of all of them is hard for the best of the oncologists. So how to detect early with out moving towards hypochondria?

While my expertise is limited to my form of cancer, I have found tremendous commonalities exist.  Unless you have a huge tumor grow fast and protrude from your body, usually the easy ones to treat, you are looking for subtle symptoms.  Now let me describe subtle – it is not the discomfort in your big toe or a passing stomachache – subtle here is about persistence.  For ovarian cancer if you have any issue in your abdominal area that you note for 11 days out of a calendar month, well, it’s time to make an appointment.  Those 11 days do not need to be in a row.

Now odds are your doctor will pooh-pooh you especially if you are younger.   I was allowed to leave my first appointment with a lung approaching collapse that was dismissed as bronchitis despite the fact that I felt fine, I just couldn’t breathe.  The aide who checked me out tried to console my wasted visit with a “better safe than sorry” mantra.  The next week I was in the emergency room, barely able to walk, talk let alone breathe leading to an emergency tapping of my chest cavity that removed liters of cancerous fluids.  No, don’t expect your doctor to decide you have an issue.

If you want early detection you are going to have to work for it.  Calendar what you feel, know your family history, push the medical community.  And if it ends up being nothing leave with joy in your heart.  Your job is to check fiercely and then let go.  I had my symptoms for at least six months prior to emergency diagnosis. It is hard to find a photo from that time where I am not holding my stomach.  The discomfort was modest but persistant. Every woman lives with occasional symptoms that make up a gynecological cancer – so the trick is duration not severity.  It is hard knowing that you could have been caught at an earlier, survivable stage.

Testing for cancer is not easy with so many different cancers to be found and defenitive diagnosis requiring surgical probes.  There are simple blood tests but they need to be matched to the cancer being pursued.  And a positive blood test sets off much more intrusive testing.  Doctors have good reason not to seek out cancer casually.  Breast exams are an example of progress but they yield a high percentage of false positives leading to stressful, invasive follow ups.

So then again, you just might want to hope for the best and instead apply early detection to fiscal matters.

I am not known for careful administrative control of my life.  The first time I filed taxes I sent them to the wrong state.  That state was grateful and insisted on keeping them despite the fact that I really owed the amount elsewhere.  This experience may or may not have influenced my conclusion that the less I attended to financial matters the better.  I coped by trying to minimize my exposure – I spent very little.  It served me well in management because I avoided expenses and made checks and balances very, very simple.  I ran organizations from age 23 on and was known for this effective but odd style. This month I got my comeuppance.

When diagnosed, I relocated for easier access to services that can be found in a city in the hopes of prolonging my life.  My small town credit union account became my savings and I opened a new credit union account near to my new home.  My new account handles my bills.  I peer in monthly to conduct business.

Every time I tried to peer in to my old account, though, my password wasn’t accepted or the test questions were too obtuse for me.  What was the name of my last dog?  My dog just died after 16 years – which last dog?  And was it all lower case?  By then I had tried too many times and was locked out.  I could never get in.  Finally I vowed to make it happen, hung on the phone for personal guidance, got into my account and thought ‘holy shit!’  I fast dialed the teller back and said something is very wrong.  In fact, in the last month my account had been blatently hacked – check after check was signed by this dude, Brandon DeWeiss, from his checkbook, with his address in Gresham and his signature. And yet my account was paying for it.  To the tune of thousands of dollars.  The fraud teller assigned me, while very nice, had a changing story of what I was liable for. First it was anything beyond the last 30 days, then it was the far more dire liability for any fraudulent check not caught in the last 24 hours.  So, am I supposed to check my account daily? And when did banks start cashing checks with out looking for any sign of relevancy?  And when did that lax attitude become my problem?  My account is now full restored after a few days of deep stress.

So I guess early detection is a good rule for life. I am not sure that I am the best to guide anyone further along that path, though.

The photo shared here just won an award.  It reminds us that beauty lies everywhere.  In this photo you see ovarian cancer.

Transitioning to a New Life

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Transitioning to a New Life

This week closes out my first three months of living with metastasized cancer. Stage IV Ovarian Cancer to be exact. As someone commented, “a bump in the road’ to which my sweetie responded “yes, a major bump in the road.” But he laughed as he said it. We stay still saddened by our new realities but also feeling like “We are and will be okay.”

So here is a little snapshot of our moment.

I am glad to be leaving the poorly scripted emergency phase of shock and awe. Frankly, I can’t look back and begin to figure how we could have coped without the swift intervention of so many caring souls. Mike and I bumbled through those first few weeks as grief stricken automatons. There is just nothing reasonable about having everything we carefully constructed and adore about our lives being torn to shreds. Add to that the trigger word of “cancer” combined with “advanced” and our ability to grasp reality disappeared.

Month one we were in full shock. Month two we realized it was time to get with the game. And, by the close of this month we are feeling about 60% present. July 20th marked the close of our emergency trimsester.

Mike and I are doing well. Being protected by family and friends allows us the space to catch up. We do not like our reality but we are ready to deal with it as the loving team that has carved out a homestead in the woods and pushed for new frontiers in justice organizing. We will deal with it as the same loving team. Now we calibrate options for homesteading and organizing with one new reality, getting me into a very long term remission (length of time in 1st remission correlates with length of life.) There is no recipe for staying in remission. We recognize our limitations and the serious stakes we face. But we also feel hopeful.

Medical staff at Kaiser actually used the word ‘great’ in a sentence describing how I was doing – a first from the world of dour oncology. And my tumor marker continues a jolly downward trend not only indicating it is a useful tool to assess how I am responding to chemo but also that I am on a clear trend towards remission.

One bittersweet recognition is that my permanent health status might require me to be in thick of resources vs the woods. Leaving the woods, the pond, the year round garden and our many sources of homestead joy is a tough and still not completed decision. But we are looking for a new home in the city.

The next step in our stabilization phase is returning to living on our own.

Journey With Cancer – The First Hello

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

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

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

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

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

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

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

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

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

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

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

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

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

Marcy Westerling
Oregon • June 10, 2010

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