Living a Life With and Beyond Cancer

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.

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To Philly and Back!

I got a taste of my possible new normal last week and it wasn’t bad. In fact, it felt a lot like my old normal, a life I did quite love. Facing mortality I am determined to enjoy whatever each day brings, but that attitude can belie a deeper truth of who I truly am and the life I would like to live. I like being engaged, busy, in the thick of things. I have adapted well to being ‘in the thick’ of life on the infusion ward and the acupuncture clinic but there is a bit of guise in that.The week, starting with last Saturday, March 30th, was BUSY. I knew it would be, so trying to ration my energy, I had even asked my dearest friend not to fly out for my birthday party (sigh) fearing a visit on top of big events would be too much. Even with Stephanie not joining us from Minneapolis, it was quite the gathering. People drove in from many directions to create such a mass that few individual conversations happened but oh what a mass of energy and fun – what you would hope for at a dance party.

The space was lovely, the weather beyond perfect, the host team award worthy and a cake that I never got to sample perhaps in an inadvertent boycott of the cutting into such a thing of beauty. The cake was massive and covered with the ‘best of’ photos of yours truly collaged artistically together.

I stayed on the dance floor and despite my fears that my lung capacity might reduce my ability to boogie, I did not return once to the designated ‘marcy rest throne’. It was wonderful dancing with so many dear friends. At the height of the evening some loud bangs erupted. Oops, the accumulated sound had detonated a few wine glasses. It was time to start winding down.

I had a day of rest before flying off to New York City. Two big east coast events had been foisted together without much ease. The first was a two-day conversation closing out a two-year thinking/action project on engaging the white working class in progressive identity. ROP was among four other groups to feature their work. It was a typical such gathering – 12 hour days, an expectation of your mind always being on.

A special needs person such as I is theoretically accommodated but there is only one size fits all participation. Sit up, stay engaged at the table and maybe, if you are determined, manage 8 hours of sleep. Day one, I functioned. Day two, I functioned. Day three, I functioned and I stopped holding my breath waiting for a glitch as my body rebelled. For five full days I functioned just like any other member of the working world. And I loved it. Luckily, I was able to manage quality food and exercise (there was no day that I walked less than five miles – god bless Manhattan.)

The formal meeting ended. I switched to family housing, slept a full 10 hours and had enormous support in the logistics of the second adventure. I awoke at a leisurely pace on Thursday to walk the 3 miles to Penn Station, train to Philly and exit the train to find the one and only Holly Pruett waiting at the top of the escalators prepared to snap a photo to document this moment – after 18 months we were going to walk to University of Pennsylvania in Philly for a medical appointment. We were finally here.

Holly apologized for her ‘wardrobe malfunction’ but I knew she was the perfectly attired companion for my assignment today to prove to UPenn that I am in ideal health. Holly looked young, fashionable and vital, loaning a definite edge to my efforts. She had clearly spent her proceeding 10 hours in Philly preparing to be a tour guide as we walked the mile from the train station to UPenn. If this was to be my new home, I should start learning about it. (Philly is the 5th largest US city, has five major sports teams and a superstitious relationship with where William Penn’s statue resides in the relative height of downtown Philly. There is more, much more, but we hope to have time to share the delights of Philly.)

In no time we were at the stunningly new, open design of the research wing, signed in and waiting for our appointment to start. Both Holly and I sighed with enormous relief when they acted like “yes, we are expecting you.” All the intake folks were like “really, you are traveling here from Oregon?” YES! WE ARE!!!!!!

The person we have negotiated with for 18 months was there in the flesh and blood. Everything started with hugs. The repeating of information, often having a flash of panic, ‘wait, could sharing this disqualify me?’ Meeting the doctor in charge, Dr Tanyi, who like my new OHSU doctor, is both brilliant and communicating to me through a Slavic accent that I have yet to master. With great energy he reviewed the theory behind the TWO (who knew) clinical trials that I was being screened for. Between needing to remind myself ‘I am truly sitting here’ and the accent, even with my great familiarity with the trial theory I know I missed details.

After the physical exam, he declared me an ‘optimal candidate’, posed for a group photo and left us to meet the project lead and work out the details like the dates for my formal signing of paperwork (May 8th), apheresis/dialysis (May 22nd) and the first vaccines over the three days of June 4th, 5th and 6th with subsequent vaccines every three weeks thereafter until I decide to stop, we run out of my tumor or the cancer grows.

I arrived home after midnight last night. I am thrilled to be home and ever hopeful that by choosing to loan my body to the frontier of medical research forward steps will be made in taming ovarian cancer and extending my own life. Formal signing of paperwork will not happen until May 8th but there is every reason to belief that, courtesy of many, I will be enrolled in the Phase One, cohort four arm of this trial. Let’s keep our fingers crossed for just a little longer.

What a week! Thank you all for the great send off.

love, marcy

 

Plodding Along

For weeks and longer I have tried to draft an update that serves the purpose of sharing information. I have started many. They all languish for tone. They sound woeful and yet I write during a positive moment – I might be getting a second remission. Another remission was not very likely given this last 17 months of treatment failures. Remission does sound great. It is also hard to see it as more than a short break between treatment. My body and I are very, very tired of constant treatment so a break is not to be sneered at. My body and I are also tired of the constant suspense. Between bi-monthly blood tests and the ongoing lurching steps towards the UPenn trial, what happens next hides behind curtains that I do not get to chose.

I should be shouting out good news but really I am calculating the best way to get through the day. What are the top three side effects that I must fixate on tempering? I won’t list the options.

My orientation is towards planning, micro-planning perhaps. I have adapted to many aspects of my new terrain, this staring at mortality, but I find living with imminent death somewhere between the biggest uncertainty and a reality far too certain. It sucks for planning around. So then I fixate on the established treatment schedule, trivializing the point of treatment by feeling entitled to dates being met when in fact disease stability is the only real goal (and then extending and extending that stability). Of course my treatment plan changes to match my needs. But I hate how it ruins my carefully re-calculated plans again!

Friends, ever-loyal-beyond-belief friends, take over the planning details so that I have less reason to obsess. I focus on adapting to the new truths. I can’t tell you how many times my graduation date from this chemo regimen has changed. Most recently, after a tough week of accumulating side effects it seems that I might not go additional ‘extra’ rounds of this regimen but that wont be determined until March 28th, the same date as I am schedule for another chemo round – whatever. I will arrive packed for the decision we make.

Most of the time I just wonder as I live a life of such low bars. My days are a sequence of very, very small triumphs. And it is so many months now of trying to fashion this into a life.

I mange to get to weekly chemo, fast for 36 hours around each infusion, make it to my acupuncture appointments twice per week, exercise daily and not much more. I have idle hours. I sit and play at the iPad, read and think of the next tiny task I will attempt – maybe it’s sweep one floor or gather laundry. It is never as complicated as ‘do laundry’ because that is now a concept that needs to get broken in to component parts often over days.

I have mentioned my determination that 2013 would be the year I focused on living and returning to my old passions. And I have. It has exhausted me. It also derailed the writing projects I started. This girl-living-on- chemo seems only able to mange so much. Mike and I did attend the first national Anti-Fracking Summit in Texas in early March. The passion and determination in the room were fantastic as was our session on rural organizing. I continue to advise some of these new contacts as they work on the ground in rural america. Texas was great and yet how hard for me. I got sick and it highlighted the reality of being disabled in a fast moving world. One terminal friend inquired, “Is it too much, these attempts at being part of your old life?” Maybe, and it makes me sad.

I limp around an intersection between malaise and treatment-induced-exhaustion. It is a quiet place, fraught with intentions not to be realized any time soon. My forays just prove the point. But despite my disappointments at how hard a front line role in organizing stays for me restricted to cancerland, behind the scenes I continue to advise and be valued and I am grateful for this role.

The UPenn update is despite their ongoing delays, Holly and I are showing up on April 4th for a pre-screening since the actually screening can’t happen until their vaccine making building setup is expanded. Hopefully, my real screening will happen May 8th with the final vaccine making step taking place on May 22nd when they pull out and return my white blood cells to combine with the rest of the materials they have been prepping from my tumor removed back in October 2012. If those dates happen, I would receive the vaccine three weeks later – a date carefully calibrated to be within a window as well as on a day when only one other woman in the the trial gets her vaccine, since the FDA won’t allow more then two women to be treated a day during this highly experimental phase. Each injection needs to be timed for when a radiologist can use equipment to guide the vaccine to the selected groin lymph node.

This is not how I wanted to spend my summer, in planes travelling to and fro. Marcy the planner, had mapped this out quite well to be a winter activity. My entire adult life had been about building the life I wanted. And I did. This cancer phase is about enduring little control and still figuring out how to thrive. (Grrrrr….) And remember up until my formal screening, I can be disqualified for a roster of possibilities.

And ergo the party. What better time for a party then as a counterweight to my 3rd cancerversary – a time of reflection on the losses, new reality and being alive still. Spring is swelling around us. The passage into this new season assures we are all still here – living and building the best life we can. It is good, wonderful quite often, and yes, hard for all of us as well. A party is a chance to pause with the positive. Attending a dance party doesn’t mean YOU need to dance but that you will be in a room pulsing with the beats of life and a live dj that knows how to get your toes tapping from whatever corner you find yourself. Good food, good people. Me celebrating a birthday that, alas, is a triumph to realize. Yes, a party is a good thing. I very much hope to see you there.

Come Join Us!

Marcy’s (Birthday) Dance Party – live DJ

Saturday, March 30th, 2013 

7:30-10:30 pm

“Joy is the simplest form of gratitude.” ~ Karl Barth

Join together in gratitude for Marcy’s 54th birthday and the community that sustains us all.

No gifts beyond your presence.

warmly, marcy

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

Transition to Retirement & Disability with a Party

It is Thanksgiving Holiday week – a ritual of gratitude for many in this culture. The wind howls, the rain (& snow!) falls, the last of the leaves can see their fate. I am excited for winter. These days I am excited for anything that I get to be here for.

Right now I hope to be around for a lot. My body feels good most of the time. The first look-see since diagnosis showed that the chemo had done a valiant job. My cancer had not grown and much of it had shrunk. (Of course what I really wanted to hear was the radiologist’s declaration of NED – no evidence of disease. While you can get that with an advanced cancer diagnosis, it is a little bit of smoke and mirrors. The very definition of Stage IV is the cancer lurks. But my disease is stable.)

And so it is party time. For those who can travel in ROP is hosting a party on December 4th, 2010 unlike anything we have done before. For starters, it is downtown – oh my! (Regrets to all of us who fret the driving but some times things just happen that way.) We have friends flying in that meant so much to the founding of ROP. And hopefully many of you can be there as well!

Why this party? We gather to celebrate the wonder of transitions keeping things very much alive. Cara Shufelt, long time organizing soul mate and dear friend of mine, returned to ROP as I stepped off to my fellowship year with the intent of continuing a long term focus in rural counties outside of Oregon. Her return was not about my health but rather a shared vision.

My health did waylay my plans. My health, though, has not waylaid ROP or Cara. This makes me so happy. So Saturday night, December 4th the ROP community gets to celebrate continuity, new directions, vibrancy, and the thoughtful cycles that define life as I formally retire. Much love, marcy

Roots & Wings Celebration * Saturday, December 4th * 
Portland, Oregon

5:30: Roots & Wings Celebration A joyful look back at where ROP comes from and where we are heading honoring ROP Founder Marcy Westerling, new Director Cara Shufelt, and the growing community of rural leaders at the heart and soul of ROP.

1pm: Community and Resilience in the Face of the Right An interactive afternoon with national movement leaders and organizers from the NW asking what we can and must do to expand our movement for justice and counter the resurgence of the Right.