Almost One Full Year

This May 27^th marks the close of my first year of blogging. I got into it by happenstance. Last May I was adjusting not only to entering the clinical trial at UPenn but also to the ambitious cross-country travel for this experimental treatment. I was hobbled by my first bout of bursitis. Not able to move, I explored the world of blogging until I had my own site. (Thank you, WordPress and Kim W.!)

The blog expanded the world I communicated with beyond the valiant friends and family listening in via my Caringbridge site to whoever might want to find me. I am still learning the value of tagging each post so that folks able to access the Internet, whether in Isle of Man, Belarus or Palestine, can find my Livingly Dying blog.

There have been 33,160 visits to the site and while 27,144 originated from within the United States, 6,019 came from another 101 countries.

I like to think the blog lessened other people’s isolation with disease. This blog certainly reduced my isolation. Thank you for the comments, insights and support. I also hope the blog championed the possibilities of clinical trials and immunology even as it offered an overly realistic glimpse at challenges of trial participation that required significant travel.

A year ago, paperwork was just signed making me officially in the trial. I awaited my Apherisis on May 22^nd to gather the dendritic cells to combine with my harvested tumor for the kickoff vaccines the first week of June. The year was filled with the predictable highs and lows of a terminal cancer patient choosing an ambitious Hail Mary pass.

This week I officially enter an observation phase. It has already been two months since my last treatment and the deleterious effects of the drugs are waning. My ca-125 continues to rise and is now at its highest point since frontline treatment. What should trigger concern means less because I am an immunological experiment – and science is beginning to see that patients undergoing immunology don’t always have a steady or fast path towards cancer stability. Rather, my body might be learning, which is good, and part of that learning is mastering the skill of recognizing and then eliminating cancer as happens in a healthy body. For those who love to understand, watch this scientist-to-scientist video explaining the emerging breakthroughs of immunotherapy http://www.scientificamerican.com/article/wolchok-video-who-knew-cancer-has-an-off-switch-video/

I will not be retested for months – a thrilling release to enjoy my first break from treatment since I started this journey with metastatic cancer four years ago.

I intend year two of the Livingly Dying blog to focus on rebuilding and thriving as I work to extend my own break from treatment with expanded efforts in self-healing. If you have your own thoughts for what you would like to see more of on this site, please share.

Warmly, Marcy

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Aging in Place

            The Center for Disease Control defines aging in place as “the ability to live in one’s own home and community safely, independently, and comfortably, regardless of age, income, or ability level.” A lovely, simple notion with a growing fan base working to insure services and community spirit are there to allow such aging in place to happen.  Everyone benefits. I, though, define aging in place as waking up every night at 4 a.m. wracked by joints and muscles crying out for attention. There is no position that offers solace. I am in my early fifties. I used to look younger than my age, used to be in the top fitness level for my age, but now I am aging rapidly in place, courtesy of living on chemo.

            My last ct scan documented the necrosis nibbling away at my bones, most notably my hips. Chemo apparently interrupts the blood flow leading to bone loss. What I know is that I bend to pick things up as if I am imitating an old, old, old person. If I sit too long, I rise at an attention-attracting slowness, pulling myself up and then lurching stiffly the first ten steps until I start loosening up to resemble someone younger than 80. I cross the street with care knowing that I have but one speed; there is no spurt capability to rev me out of the path of an unexpected car. I used to be known for a different one speed. I zipped as if I saw a fire that needed to be contained. A favorite childhood photo shows me as a determined toddler, using speed, hands engaged, forward leaning, eyes focused, as I jettisoned my toy baby carriage to whatever captured my attention. I was always on a mission.

Marcy on the Move

            Ironically, as I return to chemo next week after a 55-day break from all treatment, I anticipate some lessening of joint discomfort. The cytoxan (one ingredient is mustard gas) is used in a pill form to treat arthritis. When I started it back in early June it miraculously cleared up my walking woes – I went from a woman needing a cane to a woman moving through life with relative ease. Perhaps that will happen again!? While I hope for some respite, I know that same recipe of cytoxan and avistan will further the cumulative damage to my body in its effort to keep cancer at bay. And, of course, the nausea will be back.

            I need to accept this body under siege as my own. I have been fast forwarded through an aging process courtesy of treatments. I look older but mainly I feel significantly older than my years now. The ct scans show that it is not an imagined feeling. The wear and tear is real. While I resent this, my form of acceptance has me seeking out the humor in it. There is much irony to be found.

            I, who fret not getting to live through old age, am having it delivered to me. It seems that really, middle age is what I may not experience. My entry into cancer world was an entry into senior world, cancer being a disease that disproportionately impacts older people. I am ‘retired’ despite my current age being labeled as “peak earning years” – another joke as I downsize text messaging out of my phone plan to save a few dollars. I join the daytime tai chi classes filled entirely with elders. Almost everywhere I go I am the youngest, often by far. My mother and I now face the same issues – burial plans, sleep time discomfort and movement challenges. But she is in her eighties. She is chronologically suited to this aging in place.

            An early on cancer pal, Val, since deceased at the age of 44, died looking so young and angelic – her wasting body resembling some innocent 10 year old. She was a filmmaker and poet who loved to get people’s stories out of them. She loved elders – the wisdom and whatever else attracted her. I never fully understood. She told me her biggest regret was not getting to live those senior years. Her plan was to interview them to gain access to the experience. I never asked her how she dealt with her own aging in place – frankly, her treatment arc may not have given her that experience. She went more from exuberance to frontline treatment to long remission then to 18 months of active wasting away. My trajectory is more steadfast decline.

            So much of life’s journey seems to be about taming the ego. I am middle aged but feel much older. It sucks but really, why care? If I let go of my ego (Don’t I look good for my age?) I can enjoy the sublime truths of being multi-age, nimble once, swerving towards dowdy now and voluntarily raising my hand for any treatment option that keeps me on this planet albeit feeble and slow moving. The same day as I drafted this I watched an older woman in her late 70s perhaps even early 80s, quite attractive, move swiftly from curb to the middle of a busy street where she then adopted a more sedate pace. I admired her. That is who I intended to be; instead I stick to my new one speed. But in that speed I bike wherever I need to go, I accumulate 12,000 steps daily per my pedometer’s tracking with 30 minutes of these steps taking place on a trampoline as I jog in place with weights in my hands hoping to rebuild some bone. I am not what I expected at this age or any age but with my new mantra of ‘slow and steady’ I get where I want to be and I have gained skills in leaving my ego aside. Perhaps, I am a more evolved person at this sedate pace, as if I care. 

The Flight of Val

My friends,

 She is gone.

I got this simple post a day late. Weary from an all day cross-country plane trip, I now waited for the train that would take me towards my lodging. I was alone in every sense standing on this empty platform. My Smartphone informed me that Val was dead. My breath caught.

There was no surprise in the news. I had visited Val in hospice the night prior. Val lay there emaciated, glowing, moving in and out of lucidity. Cancer had won the struggle for the body. Diagnosed at 39, surrendering at 44, Val, in the words of her obituary, “relished life.” In the same obituary it noted, “In her hands a cancer diagnosis became a creative medium for conjuring an astonishing rich garden of community.”

I was lucky enough to be a small part of that community.

Val had stable cancer when I met her three years ago, two years into what she once called “This Great Difficult Thing” but she was still getting her ‘magic juice’ every three weeks with an eagerness I found encouraging. Here she was, made to order. I had put the word out that I wanted to meet a stage iv woman younger than me. I needed to be shown that this journey was doable. Val was a good one for inspiring. When I learned she biked everywhere and was recently seen splitting wood, I requested a date with her.

We spent hours strolling the gardens of Crystal Springs. In retrospect, we both lied a lot, saying how, “this was ok, this knowing that we would die younger than planned.” Despite the big lies we shared the smaller truths of how to find comfort with our terror, how to break down the enormity of our diagnosis, how to cherish the invigoration of knowing that mortality was now more than a concept.

She started her own journey by reminding us that, “None of us are getting out of this alive.” Indeed.

We met a month into my own diagnosis. I still had my long hair on that walk. Val and I were different people – she butch to my femme, she poetic while I sought solace in linear thinking, she musical and I without rhythm. And yet we were consigned to the same path, different entry and exit points, but a specialized highway for those with terminal cancer.

We didn’t maintain a high volume of contact. She was enjoying probation while I was entering lockdown. We had different needs. But Val was always there for me.

Our groups, her Salon of the Scathed and my It’s A Dying Shame, became complimentary platforms for exploring the taboo topics encountered when walking towards death or having death walk towards you – it’s never really clear with cancer. Humor, irreverence and rawness were core to our shared style. We were determined to experience the range of emotions and to enjoy the process.

Val wowed me with her soul too large to be tethered in one body on one planet. I don’t know where we go next. I am not in a rush to find out. I like to imagine Val as her own little prince on her own little planet still enjoying sunsets and sunrises – one more image of Val to delight.

Val wrote once, “I want there to be a good story to tell. How I will do battle and overcome. How you can all relax and not be afraid to click on this blog. And in truth, even if the thing does grow there are many more steps to take. There are more options. More story.” The story is now in our hands.

An ode to Val by Marcy – May 2013

Updates

Thanks for bearing with me during the very hard months of August and September. I must say that my October, which kicked off with surgery, has been great! Being back in the embrace of treatment allows me to decide that my cancer is being disappeared. My next internal scan could have been as early as now but it is now scheduled for late December/early January and that thrills me. My costume for Halloween will be that of a woman without cancer. (Oddly enough, that looks just like me! Note photo above where both Holly and I are in costume.)

Updates:

Melting Matilda, my remaining tumor being named Matilda, (to the tune of Waltzing Matilda) is my current theme song.

My extracted tumor qualified for UPenn by having more than 100 million cells. It took a full year to get to this place! The next steps start in January with the scan and then a trip to Philly (anyone have frequent flyer miles they are desperate to get rid of?) I would sign paperwork that day *if* my cancer is stable and shrunk and I pass other modest tests. Then two weeks later I would be back for a rather invasive process that harvests dendritic cells from my white cells through a dialysis like machine to allow final production of the Marcy Westerling Vaccine. Two weeks to a month later I am back for the first vaccine treatment! I would have a minimum of 5 trips to Philadelphia so you can see why the donated miles will help. I am also checking out free rides in corporate jets for cancer patients. (I know – too funny.)

My current chemo regime is weekly and low impact but there are also unknowns as I am early in the process and a second drug should get added in next week. Will I lose my hair? Place your bet – half the providers say yes, half say no.

My transition from Kaiser to OHSU should happen this week. Honestly, I still do not know if it will happen. Tuesday or Wednesday I will make the final call to see if the incredibly cumbersome process of getting accepted by a prescription drug plan is complete. (For some reason they could not check the right box that allows an under 65 year old to transition plans in their entry window. Medicare can inform me that they messed up the submitted form but since medicare cant talk to them or vice versa – dont ask me why – being right has little value. So I reapply and again they dont check the right box. Really! Since I have a November 1st intake appointment at my new provider and need chemo election day a resolution happens this week be it Kaiser or OHSU. No call today so I am hoping that they finally found and checked the right little box.

Many of you have been very generous with care packages of late. You got me through a hard time. Now you can save them for the next hard moment of testing. I truly pray that after 15 months of recurrence treatment w.mainly bad news we get a little break in the clouds – disease reduction and clearance for the Hail Mary pass to kick off 2013! (And decent election results….)

And lastly, for those in driving distance to Portland I am doing a reading at a local coffeehouse on Thursday, November 15th from 6:30-7:00.

Marcy Westerling will read from her works on Livingly Dying, a phrase borrowed from the late Christopher Hitchens.

While the content may not seem like date night material, it will be an honest chance to walk with one woman as she faces a terminal cancer diagnosis – including the positives of having a husband and community that walk every step with her.  Cancer is epidemic and dying is a given for all who enter this world.  Why not look behind the curtain for 30 minutes?

They have seating for 50 so please spread the word!

Rain or Shine Coffee House is a bright, cozy space at the foot of Mt. Tabor. 5941 SE Division St -
Portland, OR 97206

Another Failed Chemo – Goodbye Doxil

Just a quick update….the burning is done.  After completing 4 of the 6-8 intended rounds of doxil I will get no more.  My burns were too severe (3rd degree) and the drug not effective enough.  Alas.

I am to start taxol on a weekly schedule and continue with avistan.  Taxol (in combination with carbo-platnum that I am now allergic to) is a common starter treatment for many cancers.  It’s what causes the bald head although I might bypass balding and instead face more hair thinning with the lower dose infusions.

In the meantime, I am urged to seek out a clinical trail by my oncologist.  I might prefer he do that but kaiser has strengths and weaknesses.  Sometime this Fall, presumably October but I am trying to get someone to confirm that, I start medicare (2 years 5 months after being diagnosed with a ‘catastrophic illness’.)  I had hoped to stay with Kaiser.  One downside of Kaiser is that it is not insurance – it is health care (what a concept) but they only pay for their health care.  They have been most generous with me but that does not include off site clinical trails.  And the way most clinical trials work is they provide the magic drug (or placebo) but your insurance covers the simultaneous delivery of whatever is the standard of care drug(s).  Picking up the cost of your own standard of care treatments is not doable.

So, that means that as I opt in to medicare I either need to ditch kaiser so that i can better access clinical trials or, modest good news from today, I could opt to stay with kaiser once on medicare and medicare would pay 75 – 80% vs 100% towards clinical trials.  So, maybe that is doable….?  (Oh for a single payer system that would allow me to focus on being sick – although barring that, kudos do go to both Kaiser and Medicare.)

In the meantime, a few of us are traveling to Seattle in early September for the every other year international conference on ovarian cancer – maybe a door will open there. It’s all researchers presenting to their peers but they allow patients to attend for free.  Very cool.

I arrive to the Seattle conference as a chemo failure.  The list of chemos that dont work for me is mounting. My cancer grows.  Now would be a good time for a door to open.  I am concerned to leave doxil, a drug I had pinned my hopes on, but I am pleased to stop being burned alive.  And how I will cope with weekly taxol we will know soon enough.

Thanks for all your interest, compassion and support.  xo marcy

Adapting to a (Too) Short 1st Remission

 

 Last week was tough.  Too many consults with doctors that crushed our few hopes.  I am inoperable in the abdomen.  I am inoperable in the chest.  I am too high risk for radiation.  Chemo is the only option.  First choice chemo, doxil/caelyx, is available in every other country but ours as big pharma has created a supply line collapse because of unregulated greed.  (I just heard that there are no drugs available to treat TB in this country – that should scare everyone into action.  Government needs to step in.)

It is wrong but it is also my only reality.  I need drugs now.  Cancer doesn’t wait.

My docs did not initially agree on a chemo approach with one wanting to proceed gently (to preserve my marrow for as long as possible) but the other wanting to be as aggressive as possible even if the optimum drugs are not available.  We will go (not that I have felt very consulted) with the most aggressive approach because they believe I am young and fit enough to handle it.  My first infusion will be Monday, November 7th with or without the surgical port installed to make treatment more bearable.  I stay on the waitlist for the top choice chemo but no one expects availability of that this year.

Mike and I leave for a 2 week visit to family in Holland that starts later this week.  It’s all about making the most of the now.  And in that spirit I must stop typing, get on my bike for the 10 mile trek to my fitness class for cancer warriors, then to my clinic for acupuncture and then for my first session of spiritual counseling.

much love,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.

Transitioning to a New Life

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.