Marcy Westerling

September 2013

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. 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 my family had made was proving too much for my system. The feeling didn’t lift and in subsequent days I had 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 that appointment, I mentioned that I also had intermittent stomach issues in recent months and I asked to have a discussion about that as well and was told that “lungs and stomach are both big topics – choose one to discuss.” The appointment focused on my breathing. I had never before left a doctor’s office feeling silly like I did that day.

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 husband, Mike, 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 that I, Marcy Westerling, had some form of advanced metastasized cancer.

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. 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. 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 that 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 my 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 that accepted the “new norm” and was geared to bolstering my odds. They say that diagnosis via a collapsed lung means you have a ten percent chance of surviving to two years.

I passed that marker in April of 2012 with little fanfare, — at that point I was seven months into my first recurrence, and my cancer was far from tamed. An essay, Expiration Date, marked the occasion. The summer of 2012 was especially hard as I experienced fairly extreme Doxil burns on my butt, hands and feet before being taken off it.

I wrote essays about my experiences, and I started a support group across ages and diagnosis for women wanting to talk about staring at mortality. It is 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. It is 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) A great thing about treatment at University of Pennsylvania is they don’t discard you from clinical trials if your disease progresses, they just adapt.

Finding myself on the cutting-edge of medical breakthroughs, I decided to write a blog so that others seeking to prolong living with advanced cancer have easy access to my experiences. It is called Livingly Dying – notes and essays on daily life with terminal cancer. To date, women from over 40 countries have accessed the site. To comment, contact me at marcy@rop.org.

I hope that by bartering my body for medical advances, I will be granted 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.

Editor’s Note: Marcy’s treatment summary follows:

• April 2010 – diagnosed with Stage IV ovarian cancer; optimally debulked; received standard frontline therapy (Carboplatin/Taxol)
• June 2010 – started parallel Phase Three clinical trial (BIBF 1120)
• October 2011 – recurrence with multiple visible tumors in the abdomen; began treatment of Gemzar/Carboplatin
• March 2012 – discontinued Carboplatin
• April 2012 – discontinued Gemzar; CT scans showed some tumors stabilizing while new tumors appeared.
• May 2012 – began treatment of Doxil in May
• June 2012 – added Avastin
• August 2012 — discontinued Doxil due to a mixed CT scan and burns on hand, feet and butt.
• October 2012 – Had surgery to remove easily available tumors – 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 a head start going back on chemo.
• October 2012 – began treatment of low dose Taxol with Avastin
• January 2013 – CT scan showed disease reduction and no new growth
• April 2013 – discontinued Taxol and Avastin
• May 2013 – CT scan showed disease reduction and no new growth
• June 5/6 2013 – care was transitioned to the University of Pennsylvania for first treatment in an immunology clinical trial (Cytoxan, Avastin, vaccines)
• August 2013 – last treatment of immunology clinical trial at UPenn