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.)

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5 responses »

  1. Marcy, here we are 12 years after my diagnosis, and our medical community continues to misdiagnose women, as they did you. First, I am sorry as it is possible to be that you endured all of that. Second, I promise to continue to work toward education and advocacy until there is a reliable screening test for all women. You have my word on that.

    • But my diagnosis process wasn’t any harder than the next person. You were diagnosed, to some extent, via the death of your mother. How hard is that? There just are so few ‘easy’ stories because medical stuff is just not as advanced as on Star Trek. but saying all that, I accept your pledge. Heck you helped map the yew! I’ll always bank on you, girl!
      Xoxo

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