I am a long time community organizer with a passion for justice and 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. I was having a wonderful time!
I was derailed by a Stage IV Ovarian Cancer diagnosis in the spring of 2010 as I turned 51. I have been in treatment since then. (A more detailed back story is posted below this.)
I strive to embrace livingly dying, a phrase I credit to the late Christopher Hitchens even as I co-opt his language. 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
In the Spring of 2013 and, twenty months after starting the qualification process, I transition from traditional treatment efforts to stabilize my cancer in my home community of Oregon to a Phase One, Cohort Four immunology clinical trial at the University of Pennsylvania in Philadelphia. Quite a harrowing commute for medical care!
Finding myself on the cutting edge of medical breakthroughs (or one more splendid failure) I decided to go beyond my caring bridge site so that other patients and support people seeking ways to prolong lives have easy access to my experience.
I hope by bartering my body for medical advances I will be granted more time to find the sweet spots of living fully while terminally ill. All I can promise is to use my direct style to explore the challenges that contour this terrain.
In September of 2013 I finished the part one of five vaccine treatments and entered the maintenance phase. In October my ca 125 started a slow but incremental rise. I continued in the maintenance phase through March 2014. Scans showed my body with no evidence of disease even as my ca 125 continued to rise. It made sense to take a break and test my body. In early June, for the first time ever, I could feel cancer growing in my belly. Tests confirmed a rapid cancer surge that was inoperable. I rejected the conventional treatments offered, as as my summer of 2014 blog entries narrate, opting instead to travel to NYC to Bruckner Oncology for an experimental chemo cocktail of long infusions. In four treatments my ca 125 dropped 80% but the treatments let alone travel are hard.
I await the re-opening of the Part Two of the U Penn Clinical Trial for T Cell Depletion. I am patient # 4 on the waiting list with one patient being allowed treatment per month. Clearly, I am less in the market for a miracle and more hoping to hop from approach to approach, buying time.
Backstory: Getting Diagnosed
written by Holly Pruett
April 2010 Marcy is an incredibly healthy woman. Except for one thing: she has cancer. Fortunately, she also has an incredible will to live, so much to live for, a vast and committed community of those who love her, a top-notch medical team and an aggressive treatment plan.
This journey began on Marcy’s 51st birthday, March 25th, 2010 when she couldn’t deny that she was short of breath. Two weeks later the doctors realized it was something much more serious than bronchitis. Her lung collapsed and she had fluid drained from her chest cavity which turned out to contain cancer cells.
Because the cancer seems to have started in her ovary (confirmed by surgery in May) and has travelled to her chest cavity, it’s classified as Stage IV. While no one wants to hear Stage IV, being the exceptional person that she is, there are many reasons to expect Marcy to be around for a good long while.
First, the cancer appears to still be very small (golf ball sized) and not affecting any major organs. Second, her treatment team includes the surgeon considered one of the very best in the country. Third, the chemo prescribed (six cycles of one-day treatments, three weeks apart) is proving effective with other patients and Marcy has a 2:1 chance of having it boosted by a promising additional drug through a a clinical trial she’ll enter. Finally, there’s Marcy’s good health (which will be supported by a full regimen of complementary care – massage, acupuncture, nutrition – which she’s already enrolled in), not to mention her well-honed survival skills, and her great support system including her cherished husband Mike.
In the meantime, Marcy would love to have your support also directed to the wonderful staff at the Rural Organizing Project. Marcy was already on leave this year while she served as a Fellow with the Open Society Institute, and the ROP is being led by the awesome Cara. Let’s keep ROP strong too!
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 was stopped in March 2012, Gemzar in April. CT Scans showed some tumors stabilizing while new tumors appeared. Started Doxil in May 2012 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 did not recommend it) but the surgery did gather needed tumor for the Autologous OC-DC Vaccine Phase One trial I had been trying to enter for the prior 12 months. 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! Care transitioned to University of Pennsylvania with first treatment (Cytoxan, Avistan, Vaccines) of clinical trial June 5th and 6th 2013. My ca 125 was stable at 7 from February 2013 – October 2013. (Unfortunately, I can have new cancer growing w.a ca 125 of 13.) Ca 125 has been slowly ticking upward starting October 2013 but it is not seen as an indicator because of the trial. While I have material for four more treatments, I am stopping the trial now (April 2014) as well as going off of avistan due to too much protein in my urine and increasingly hard to tolerate side effects. I am excited to return to local care at OHSU. When and if show disease progression I will return to UPenn for the T Cell part two portion of the trial. (Read summer 2014 blog posts for treatment updates.)
Backstory: My Life Before Cancer and the Journey to Now.
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.
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.
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 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.