Welcome to Livingly Dying

Standard

Welcome to a space dedicated to the process of livingly dying – staring at imminent mortality and yet residing in the world of the living. More and more of us are finding the words terminally ill and chronic illness co-mingle. We are living longer and better despite a dire diagnosis/prognosis. But the path is not easy.

We bounce between denial, deep despair, and sheer optimism. All the while, many of us face treatment regimes that whittle us down and a current culture in the United States unfamiliar with sitting with death and dying. These writings will be of most value for:
a. people navigating the balance of living when told you are dying
b. people pursuing creative approaches, especially those stimulating our immune systems to fight back the diseases trampling us
c. people interested in witnessing one person living each day with terminal illness.
Livingly Dying Essays, Clinical Trial & Creative Approaches,  and Medical Industrial Complex Woes make up the three categories on the lower right column of the front page allowing you easy access to content that most interests you. To receive new posts click the follow button in the upper right column. I share my journey to support collective efforts to live well while dying. I am feeling my way out loud. Thank you for joining me. Comments are always welcome, in fact, they cheer on the process. If you scroll below this welcome, you will find the running narrative with most current post on top.

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 

Alive! Three years into the cancer journey

Alive! Four + years into the terminally living journey.

Marcy Westerling – marcy@rop.org

Ten Days of Okra

Standard

The story was great even if the promise seemed slim. There was little to lose in completing Ten Days of Okra. I started serendipitously after a year of keeping it on the back-burner. I had told some friends over Friday night dinner about the okra cure as we sat worrying about my ca 125 being on the rise despite heavy-duty treatment. We felt a bit desperate. On Sunday, October 5th a friend showed up with a half dozen baggies of okra, parboiled to perfection. Barriers removed, it was time to start my okra cure.

images-1

There was little instruction beyond the great story that motivated us. Larry, husband to Belinda my vaccine partner during the UPenn Trial, narrated the tale. He was tasked with picking up a swing set for their five-year-old. He pulled up to find an 80-year-old man rising from his rocking chair to greet him. ???????????????????????????????????????????????????The guy was full of stories and had lots of time. He wore his britches up towards his armpits. He amplified each point with the use of his remaining arm. He started by explaining the missing arm he lost at birth. It was a rough start in life. The unborn child was presumed dead and to save the mom they yanked him out, tearing off his arm and leaving him unattended while they worked on the mother.

He pinked up on his own finding oxygen and eventually made a noise that got him attention as a living creature. He views his entire life as a gift. He evangelizes the point. As a young man he was diagnosed with terminal cancer and sent home to get his affairs in order. Praying in his car he heard god clearly state, “If you eat okra for ten days you will be fine.” He did. He was there as proof. An 80-year-old orating from his front porch to every car that stopped.

Larry’s wife, like me, has advanced ovarian cancer. The old man shared the okra story then moved to an outside freezer filled with bags of okra. He handed Larry a big bag. Belinda and he were just finishing up their ten days as Larry summarized the experience with great humor. (Please note: okra is a powerful cleaner out of you gi system.)

A year later Belinda is the only patient in our trial that hasn’t recurred, keeping in mind that we don’t know all the other patients. I was game to try okra.

Okra relishes extended, hot weather. I am a northern gal. You don’t find okra fresh, frozen or pickled with ease here. But it is the end of the longest, hottest summer I recall in Oregon and my friend tracked some down at the state’s largest farmers market. I had to parse out what I had, not sure I matched the big bag pulled from the freezer in the story. But I ate it every day for ten days and loved it.

A great story should have a rousing end. This one might but not yet as today’s test results show a third uptick in my ca 125. I must replace carboplatin with a tougher alternative not because it is better but because my body can no longer tolerate the first choice. I don’t like loosing drugs; I don’t like increased side effects; I don’t like cancer growing. I wonder if I need to double (triple?) my intake of okra – desperate times call for desperate measures. If you find any pickled okra, send it on.

Ever hopeful

Ever hopeful

Angels and Okra

Standard

Since June I have survived with the help of strangers and a hardy core team – angels all. As I careened from triumphant retirement from an arduous (how that definition keeps changing!) long distance clinical trial year to an unbelievably short cancer vacation interrupted by a truly shocking cancer surge, I found my situation too demanding to cope with my many friends’ confusions. My rollercoaster ride, after four years, seemed to jar many friends off the course back in June just as my own vocabulary and capacity for explaining what I have always expressed as a terminal path, diminished.

It's a challenging ride.

It’s a challenging ride.

My coping attitude was, “Seriously, YOU’RE confused?”

I dropped seeing folks. I didn’t have the energy to support external confusion about my saga. I knew our mutual love was as strong as ever but that we now had contrasting needs. I couldn’t educate beyond my blog right then.

My world was reduced but then re-expanded. A trusted core stayed present and new angels stepped forward. A neighbor in a basement apartment next door started leaving flowers and cheer. Old friends agreed to host me with no hesitation as I popped up needing a bed and a toilet to puke in – definitely not an ideal guest! – and the simple yet extraordinary lengths they went to, provided deep solace. The New Yorkers on buses and street corners who saw my moments of need and were there or just stepped aside.

When I relocated to Marin County, California for care I knew NO ONE and, worse yet, this was not a community (think suburbs and small towns) that you can operate in on your own. Cars and money are required. I composed a five-sentence plea for support, sent it off via facebook and found myself adopted by a new crew of angels. They asked nothing from me and have been driving me,

Meet Charlene, a driver with style.

Meet Charlene, a driver with style.

feeding me

Meet Sylvia - cooking another healthy dinner!

Meet Sylvia – cooking another healthy dinner!

and loving me ever since only expanding the amount of love they offer with each visit. I truly enjoy my treatment visits to Marin County!

This last trek, courtesy of Angel Flight West, volunteer pilots IMG_1325flew me from Portland to California! These new angels have eased my enduring efforts to make treatment into vacations. Who has time for pre-treatment nausea when you are touring the vast and gorgeous landscape of Oregon and California at 8,500 feet? IMG_1320How grand might you feel stepping off your private plane, onto a small tarmac, bypassing the germs and chaos of commercial air travel, to find a friend with car feet away ready to take to you the next leg? IMG_1330

Cancer may suck, but angels’ rock and roll!

The power of strangers is they accept you as you are. You can either take them in or walk right by depending on your own needs. They aren’t bogged down by the complexities of your saga. It’s very simple. You have a current need. They never tell me that they just can’t track where I am when. I am there. In need. Case closed.

Thank you, Angels, new and old, obvious and hidden, you keep me going.

How does okra tie in with angels? You would know right now if my new exhaustion levels didn’t force the okra story to be tabled to the next post. But stay tuned; it’ll be worth it. Okra always is.

A Look At Envy

Standard

A former colleague joined the recurrent Ovarian Cancer club recently and we have re-connected in a sisterhood far beyond tax fairness. We accept our reality while exploring every avenue for slowing our walk towards death. She wrote a poem I share below. I, with recurrence in 2011, relinquished my envy of old age as I focused on living long enough to turn 60. I have friends who would love to reach 50, or 40, or 30 and suspect they will not. As a child the first phrase that I was ever motivated to memorize was, “I cried because I had no shoes until I saw a man with no feet.” But admitting what we envy is to be human.

Before dying at age 44, a friend interviewed “little old ladies” so that she could experience that future knowing she would never live it. I loved that problem solving just as I love Sandra’s clarity with words.

images-4

Old Age Envy by Sandra Morgen

Envy unleashed:

walking past a man in his 70s

hauling himself down

an uneven path

before summer heat

boils the morning.

Last night

under a vine maple

lit by a gibbous moon

the silhouette of

a couple in their 80s

her blanched hair escaping hairpins

his back straight with effort

frail fingers knotted.

I used to dread old age

imagining loss, dementia,

fading, being a burden.

Cancer trumps those forebodings

incubating envy

but not resentment

an aching appreciation

of what is unlikely to be.

images-1images-2images-3

Can You Hear a Snail?

Standard

The Sound of a Wild Snail Eating by Elizabeth Tova Bailey is a profound and lovely book that shows how rich being alive can be no matter how “confined” we appear. Written by a woman dramatically bedridden (sitting up to travel to medical appointments, her only outings, is not possible) by the onset of an unknown disorder. This young and vibrant woman accepts her life lying down where just changing position is a big adventure. Rather than resist, she embraces her reality and builds a full world. A wild snail, brought home from a visitor’s walk in the woods she can no longer visit, is given a small perch on her nightstand. The snail’s world, vast to it, becomes her portal to stimulation and engagement.

A GREAT Book

A GREAT Book

The other week I attempted an honest response to how my summer has been. A summer of loss, I named it. I wrote in rebellion to an acquaintance having described my status (to me) as “Great!” I wrote that update while equally loving the summer of 2014. I regret my inability to capture how times can be both grim and wondrous – one truth need not cancel the other. Acceptance is the bridge. Increasingly I believe that balance is a core purpose of life. Joy despite sadness.FINALScreen_Saver_ETB_5_copy-300x168

This morning I found out that my cancer seems to be breaking through treatment. I grieve. I handle logistics for my next journey to treatment on Monday. I prepare for a more intense period while feeling wonder at entering a phase more intense than the now. The dog and I walk through the woods and find enough comfort to know it is all just fine. I am not okay with my reality but  I can accept that it is my reality.

Excerpt from Chapter 2: Discovery

“Each evening the snail awoke and with astonishing poise moved gracefully to the rim of the pot and peered over, surveying the strange country that lay ahead. Pondering its circumstance with a regal air, as if from the turret of a castle, it waved its tentacles first this way and then that, as though responding to a distant melody.”

“I hear you are doing GREAT!”

Standard

Recently a friend noted how difficult it was “to know how you are doing.” It’s true, I suppose. I have used the Livingly Dying blog this summer to report on the macro challenges of trying to access the care that I think is best suited for my current situation rather than bore folks with the blow by blow of this summer’s treatment.

In the jumble of the last 4-½ years of living on treatment it is unproductive to rank the various moments. But this summer’s treatment is hard – between the frequency, toxicity, length and travel, I have been living a half life as one full week (plus) goes into treatment and recovery. My exhaustion confuses me. Am I tired, how tired or have I slipped into depression? All of the above may be most likely.

This week I have accomplished tasks as cooler temperatures invited activity. It thrilled me. By Wednesday night I was violently ill – did I do too much, random luck or am I cursed?

I just don’t know how I am.

The other week I ran into an acquaintance as I arrived at the memorial of a friend. She bellowed from across the street, warm smile on her face, “I hear you are doing great!” And I wondered in what possible context she was using such an adjective to describe my reduced life of constant nausea and limitations. Was I supposed to nod in agreement? (I am doing great compared to a chemo patient in Gaza or Syria.) Instead, I declined her bear hug, saying my blood counts required vigorous avoidance of germs that day, my nadir. She asserted that she felt great. “Yeah”, I said, “but it’s not about you.” I felt like the grumpy curmudgeon I am.

This summer I have had minimal social contact – these slight encounters leave me bruised and confused. Alone, I am content.

It has been a summer of loss. I lost the cancer vacation I’d so hoped for after completing the phase one clinical trial cross county. Instead my cancer went nuts. My June to do list, gleefully assembled in May when I was “healthy” for 45 days, was pretty damn vibrant. I was excited! This summer I have lost many trusted comrades as they close out their cancer journeys. Some have been in active choice; other’s reluctant, as they died one by one. I have done more soul searching on when and how I will cease treatment. Not yet but the time inches uncomfortably close. I no longer know my next steps. I now understand that a body can only tolerate so many years living on chemo without breaks. It’s not just about containing my cancer; it’s about keeping the rest of my body functional.

So, how am I as I close out the summer of 2014? Depleted, ever hopeful and ever realistic. Please accept that reality and don’t call me a cancer “thriver” or “survivor” or tell me I am doing “great”! This summer I identify only as a cancer veteran crawling around far too much. And yet very, very glad to be alive.

Adopt Me, Please? Chemo Fanny-pack Included.

Standard

This week I used social media to spread the word that I needed a household with a spare room close to my new chemo clinic in Marin County, California to adopt me. I am not familiar with California, have few contacts there and knew no one living in Marin County.

Adopt Me!

Adopt Me!

As a community organizer, I frequently ask people to donate for a cause. I prefer not being the cause but life dealt me a needy hand in 2010. I pursue cutting edge treatments to extend my life, and thus I need to travel. I haven’t yet figured out a way to get donated flights but I can make flying my primary cost. I bring my own food, find free housing and use public transportation.

I transferred my treatment to California last round (and yes I owe you a story on that). Friends living a county away in Sebastopol offered to house, shuttle and feed me, which they did with zest. I even got a great dog companion and to review a brand new film (My Straight Son from Venezuela) as part of the deal. The commute, though, was wrong in every way. So sadly I sought out a new host family closer to the clinic.

A Great Place!

A Great Place!

How to get adopted (again) in a community I didn’t know? I started by asking patients being infused at the same time. They referred me to the oncology social worker. She was very nice but listed out only former programs, all cancelled, which would have helped me in years past with no replacement options. I was slightly aghast at the model. Actualizing a current safety net for patients was clearly not going to happen.

So I drafted a little note and started sending it out to whoever had California connections. I posted it on facebook. I sat back and waited. In the interim a stranger sent me an email. He had just read my article in the Fall Quarterly edition of YES! Magazine

Find My Article Inside on Livingly Dying!

Find My Article Inside on Livingly Dying!

on Livingly Dying and was writing to thank me. He closed his note with a Marin County address. I wrote him back and said, “Hey, thanks for your note and guess what, I am getting treated in your county and need housing.” He quickly offered support and soon his friends were spreading the word. Long story short, a community of helpers in the nearby community of Mill Valley has sprung up.

Local Host Sought in Greenbrae/Larkspur (Marin County) Community

Do you have a guest room and a big heart? Oregon cancer patient travels to Marin Specialty Care Clinic for cutting edge cancer treatment. Current travels bring me here every other week for two nights. During the day I am being infused at the clinic. I am a fit, vibrant woman. I need little support outside of a place to sleep. Questions/Ideas – marcy@rop.org

Some friends and family wonder why I don’t get a motel room. I even kind of like motel rooms – free ice and cable!

Lonely...

Lonely…

My rejection goes beyond pure budget woes although the truth is the travel of the last two months has run more then my travel for an entire year of flying to U Penn for treatment. Containing costs is the boring reason. Continuing to thrive is a bigger reason. I value community, I value barter, and I value direct contact with new people going beyond their comfort level. Finding community hosts keeps me feeling that I am living a life beyond medical care.

I fly out Tuesday for my next treatment cycle. It will make me sick for a full week — I dread the infusion. But these past few days I have focused on feeling good right now, finding new community and meeting them via the internet as I count down (not to being sick) but to a new adventure. My new host tells me, “Dinner is at six.” as she inquires on best foods. Two women have volunteered to drive me between the clinic and Mill Valley – one has a textile studio in her back yard that I hope to tour as a fellow textile artist. Perhaps I can borrow a bicycle from some one else? Keeping my true identity as I also accept my reality as a terminally ill cancer patient is not a bad balance to negotiate.

This summer I have vacationed ; ) in the Bronx Riviera, Harlem east and west, midtown Manhattan, Sebastopol and now I am off to discover more attractions of Northern California. Yes, I fit in 31 hours of chemo as well that brings me to my knees but until I am down I will enjoy the distractions. Thank you to the dozens and dozens who have spread the word and considered or signed on for a more active role in making my Marin County excursions the vacation I never dreamed of.images-2More soon on how I went from the Bronx clinic (the people’s clinic aka Bruckner Oncology) to a Marin Clinic with organic snacks and bountiful views – quite a change in zip codes!

Vignette Two – Nothing Compares 2U

Standard

As promised, Vignette Two – Compass Oncology – another heartbreaker revealing exactly where the patient fits into the medical industrial complex.

The great singer Sinead O’Connor launches into her 1990 heartbreaker Nothing Compares 2U counting down, “It’s been seven hours and fifteen days”. I always loved that opening. Since leaving Compass Oncology July 30th at 1:30 p.m. that fragment has frequented my mind. There was no romance involved with my heartbreak. It was a purely dispassionate reminder that the medical industrial complex only wants to prolong my life one way – their way. 

But you judge as I recount.

As soon as I choose the Bruckner Protocol, my team not only took on the task of getting me into this NYC clinic but also took on scrolling for prospective local providers to partner with the protocol. While we awaited OHSU’s determination, I asked around for oncologists who were either creative or in small private settings. We needed low red tape. Compass Oncology met neither of those criteria but several people pointed to the same doc as “prioritizing what the patient wanted” and no other names were offered up. So we gave him a try despite reservations – we hoped by being very, very clear we could avoid wasting resources.

Friends worked with the new patient administrator to clarify the sole purpose of the appointment, a local doctor to administer this protocol, and underlined that given my current travels and treatment I did not want to fit in an appointment with a lukewarm prospect or a dead end. I only was willing to meet with an interested doctor. (Am I repeating myself enough?) We checked in regularly to make sure that all the clarifying paperwork was in and reviewed in advance. The new patient administrator was great and reassuring until the final week. She confessed all she was doing to meet our reasonable demands but expressed doubts that the doctor was paying attention. The day prior, she called to say the doctor had pledged to call me that day with any questions. I stayed home and waited. No call came. The friend accompanying me wanted to know, “are we on?”, I gulped and said, “yes”. She arrived to pick me up at 10:15 the next morning.

The receptionist greeted us with over 20 pages of paperwork that I refused to fill out, saying, “I am here for a yes or no. If I become a new patient I will fill it out.” The new patient administrator was called in to back me up. I now had a clipboard of only three pages to fill out. I thought about the ever-expanding marcy westerling medical forest

clear cut for paperwork never to be read

clear cut for paperwork never to be read

being clear cut in my honor – a clear cut I could come to terms with if any health care provider had ever proven to read the reams of pages they demand. Sometimes I entertain myself by leaving pages blank – no one ever calls me back to fill in the blanks. Never.

My friend and I return to waiting. We watch a YouTube of African cocoa growers being introduced to chocolate, the product they make possible, for the first time. It helps five minutes pass. But then I am out front of the building pacing the in fresh air that gives me calm – even if the fresh air is in a large parking lot on a busy street. I create a pacing grid keeping me near the entrance. My pedometer will tell me I pace for over a mile while waiting. We are called in, put in a typical small, airless room to wait. I open the door, pace the hall both to observe and calm. I watch three women at a counter chatting. I decide to engage. “When do you think I might actually see my doctor? It’s been quite the wait.” They all rush to aid but of course have the non-answers of the system, “oh, he must be on his way.”

Eventually, a cheerful young woman arrives to review. She starts off poorly inquiring about a doctor I haven’t seen in years. This would be the pattern for the next hour. I was not nice. I said, “hmmm. I wonder if you have found the health summery that clearly shows who are my current doctors.” I then clarified, again, “I am here for one reason and one reason only and that is to hear if the doctor will do a specific protocol. It is a yes – no situation.” She left and then sent in the next woman who spent the first five minutes shuffling papers in her lap but at least in an effort to drill down to the topic at hand. Clearly no pre-work happened. She avoided eye contact. I was now a problem patient.

Her questions once started were mainly relevant; although she too was convinced doctors and systems of year’s prior were still treating me. Whatever. I moved her to 2014. I moved her to the protocol. There was a lot of silence as she studied the simple sheet of documentation. Her questions got smarter as she focused in. She might not have done homework but she was a quick study who wasn’t sure she liked what she saw. She said, tell me more about this clinical trail. I told her it was not a clinical trail. She insisted it was. I insisted it was not and three minutes were lost with the back and fourth that ended in truce not resolution. Then she decided it must not be legal. I assured it was, that all the drugs were FDA approved and covered by Medicare. She disagreed. I said it was off label use, routinely done. She assured me it was never done. Sigh. This was getting old. I switched tactics and asked her to look at how healthy I was, the robust lab results and the declining ca 125, perhaps, my body could provide testimonial. She conceded my point.

She left the room, we returned to waiting, me back exploring the boring hallways that make up every medical facility I visit.

The doctor arrived. He entered and immediately informed us he would never do the protocol. What perfect clarity for yesterday! He informed us I have recurrent ovarian cancer and it runs a certain course. Yes, I concurred, why did he think I was being so creative in my treatment options? He then proceeded in his own go round of why Medicare would never pay for this; my facts were entirely not relevant although I repeated Medicare was already paying for these treatments for me. I was ready to leave. My friend had given up a half day of work. The doctor closed with my favorite comment, “As a quality of life issue, you should not be flying back and fourth to NYC every other week for treatment.” OH MY GOD – this is exactly why we were in his office. Agreement and rejection in one farcical visit.

This doctor and this agency had every right to reject my request for a certain treatment. In fact, we anticipated it and thus requested they skim the few pages of data and give us their first instinct opinion. If it was a likely no, no need to proceed. We met every one of their requests for endless paperwork. They clearly understood their own staff’s repeated request that they review in advance. In the medical industrial system, those in power nod their heads agreeable, and proceed with the endless bureaucracy that ensures they can bill and the patient’s have a new hobby – sitting in waiting rooms.

By the way, the greeting for patients on the Compass Oncology website  states, “The experts at Compass Oncology are here for you every step of the way with answers, support, compassion and respect. We understand cancer treatment is a highly personal journey, uniquely different for each patient. It is a journey filled with many decisions and potential directions. For decades, the physicians and staff at Compass Oncology have been united by a singular focus: to help our patients find a clear path to hope and healing.”compass-footer-logo

Fighting for Treatment (again)

Standard

When my cancer surged unexpectedly in early June, I re-oriented my psyche for a physical battle. I had never before had such a high volume of cancer nor felt it with every move and it had showed up with such speed, in just 45 days off of treatment. With surgery removed as an option and my track record of not being super responsive to chemo, I knew I needed an aggressive plan or to be content with starting a more active stage of dying. I chose the former – the Bruckner Protocol. I had bookmarked this protocol over a year prior should I be in this exact circumstance. Within a week of contacting the Bruckner Clinic, they had reviewed all of my paperwork, engaged in salient back and fourth conversation (often after-hours between me and the actual doctors) and scheduled me for an intake visit and 29 hours of chemo.  My first chemo cycle happened within this first week!!!!

The Bruckner Protocol is a minimally documented or published regimen with limited longitudinal data. (The doctors are focused on doing versus writing up – the data awaits compilation and presentation.) I  fly cross-country to receive the treatment in their clinic.  I made the choice based on being a highly informed, extremely motivated terminally ill patient. I wasn’t sure this protocol, or anything, could keep me stable, but I knew this protocol had a higher possibility of letting me return to stability and a shot then of staying stable with other treatments. It was my best hope.

My most trusted peers affirmed the decision. It was bookmarked in their “last ditch” file as well.

I have now had 3 rounds of my 29-hour, every other week NYC based infusions. My tumor marker is in steady decline. I fly back to NYC next week for round four.

A full 50% of my life now goes to travel to NYC, infusions and recovery. In the other week, you might wish for me as I wish for me, relaxing moments with friends and family but no, you would be so, so silly. My good week goes to full on battle with the medical industrial complex. I did not select this battle. I am merely seeking a local doctor who will follow my treatment request and give me the Bruckner Protocol, which uses only FDA approved drugs. Apparently, patient’s rights do not included allowing a dying, informed patient to present an obviously working, out of the mainstream choice.

Let me give you, dear reader, a few vignettes to illustrate the perverted life of a patient fighting to stay alive through the end of the year.

Vignette One – Oregon Health Sciences University (OHSU)

OHSU Opulence

OHSU Opulence

I have made clear in prior posts my love of OHSU. While I wonder at times what it means that they are such an opulent campus (who is paying for this?), I enjoy the vibrant energy, art-filled, green-filled spaces that buffer tough treatments with distractions. They are a public, non profit who in their own mission statement claims, “Setting the example for integrity, compassion and leadership, OHSU strives to:

  • Educate tomorrow’s health professionals, scientists, engineers and managers in top-tier programs that prepare them for a lifetime of learning, leadership and contribution.
  • Explore new basic, clinical and applied research frontiers in health and biomedical sciences, environmental and biomedical engineering and information sciences, and translate these discoveries, wherever possible, into applications in the health and commercial sectors.
  • Deliver excellence in health care, emphasizing the creation and implementation of new knowledge and cutting-edge technologies.
  • Lead and advocate for programs that improve health for all Oregonians, and extend OHSU’s education, research and healthcare missions through community service, partnerships and outreach.

June 13th, I got my devastating scan results and a phone call from my OHSU doc assuring me, “we will fight this.” That afternoon I emailed her the first of many detailed emails explaining why I did not want to accept her treatment proposal but instead requested that she partner with me in utilizing the Bruckner Protocol to beat back this cancer volume. I sent her the links to the clinic as well as all available papers on the thinking and delivery of this protocol immediately. It was a complete introduction to the clinic. I thought OHSU’s mission might make this an easy match.

Given my arduous treatment schedule, I insisted that her office wade through the materials prior to me coming in for an office visit. After all, a visit should be based on their agreement to use this protocol because I have already made my decision. The office staff kept asking for more information and finding new red tape that needed to be worked through. They were attentive. We were responsive. Finally, it was time for the office visit. It was short and upbeat, with the doctor arriving, asking if Medicare would pay? I said, “yes.” She said, “Oh, well, then this is a no brainer.” She then explained why she had no reservations with the protocol even though it was atypical. She felt “the doses present a tolerable risk.” We spent the remainder of the office visit with her recruiting us to a fundraiser. We left light-hearted – we had done it! We were back at OHSU!

The next week I returned for a final visit to Bruckner Oncology. The evening of the first night of treatment, I got a message that the OHSU Pharmacy had met and rejected the protocol finding the documentation too limited (it is limited.) By the next morning I was wretchedly sick and the clinic had a heck of a time stabilizing me. Bad news, travel and poisons don’t mix very well, it seems.

The saddest part of the rejection came that Friday morning as my OHSU doctor, a wonderful, compassionate doc, left me a voice mail disclaiming any endorsement of the protocol, calling it “crazy” and asking me to return when I could document its efficacy. (Obviously, my rapidly declining ca 125 not counting.)

A research facility requiring documentation for a treatment is entirely reasonable. To ignore the material presented and waste 45 days of a patients time by skimming and not processing what is provided, that, dear reader, is wrong. Maybe what I am doing is crazy. But the deciders could have decided that June 13th when I provided them with what there was in terms of documentation. They failed in their job. I did not fail in mine.

Vignette Two – Compass Oncology coming soon – another heartbreaker revealing exactly where the patient fits into the medical industrial complex.

 

Reporting In

Standard

Some periods of time are too dense with experiences to narrate. Add in the sharpness of the struggles, their lack of resolution, a heat wave, a chemo cocktail designed to knock you on your ass and a bit of silence might ensue. My focus is on putting one step in front of the other. Surviving.

The good news is we are surviving right now and still imagine August as a calmer month. Perhaps I will have vignettes to share then. I pack for my third trip to NYC since June 21st. This trip I do solo, despite my husband’s protests. With an uncertain travel future looming and mounting costs, I need to know that I can make whatever path I follow sustainable.

The last trip really felt vacation like even if we never got much beyond the infusion suite.

This trip will be down and dirty. I will be late to arrive, early to leave, just getting in my 29 hours of infusion time. Turned away at the deluxe, free cancer housing in midtown Manhattan with a terrace to delight

Me, reclining with chemo overnight bag pumping away, on the cancer terrace.

Me, reclining with chemo overnight bag pumping away, on the cancer terrace.

and a waiting list to match, I got adopted by an old colleague in West Harlem – a touching kindness and a treasured connection to my non-cancer life.

In lieu of truly filling you in on the now, I offer a brilliant short piece written by my first cancer pal, Bev. She has offered me solace as I learned to live with terminal cancer. This week she entered hospice. She will leave this world with a bit of my heart. Enjoy Mystery Bag, a little peak at living with cancer.

Mystery Bag by Bev Lipsitz

I was in a writing group for women with cancer. One day, the facilitator brought in a bunch of paper bags. She told us to pass them around and without looking, feel inside each bag.

Then she gave us each our own bag, and told us to reach inside,  and still without looking,  write about what we found.

When I felt inside all the bags, there was only one item I could identify. It felt like a swizzle stick. I thought I might write a story about a wonderful vacation in Hawaii.

But I got a different bag, with something I couldn’t identify by feel. Hmmm, what to do next…

Let’s try a CT-Scan. Fill the bag with contrast.  Lay it down and slide it in and out of a machine that looks like a giant donut.

Click, click. Breathe. Hold it. Breathe. Hold it. Click, click.

Sorry bag, the pictures show that it’s cancer.

Oh no! Now what do we do?

Surgery! Slice the bag down the middle. Take the damn thing out. When you’re done, staple the bag back together.

Oh this thing is ugly. Can we learn anything more about it? Sure…Slice it up. Send samples to the lab. The report comes back: its OVARIAN cancer. OH NO, everyone says that’s a bad one!!!!

Did we get the whole thing out? Leave any pieces inside? What if there are some crumbs that didn’t get out?  How do we get rid of those?

Chemotherapy! That should take care of it. Pour some poison in the bag.  What’s that? The poison burned a hole in the bottom. Anybody got any tape?

Oh by the way, even if this works for now, this cancer could come back. We might have to do this all over again…and again…and again…

This bag is a mess. I wish I had gotten a different one, maybe one with some candy in it, or a brownie.

You know what, though? This bag is stronger than I thought. Even with the cancer, and the poison, and the staples and tape, this bag can carry a lot of stuff. Don’t worry, bag. If that thing gets too heavy for you, we’ll bring in reinforcements. Wrap you in a blanket. Make you comfy cozy. Sit with you. Don’t be afraid.Unknown

 

Thank you, Bev, for your clear way of looking at our lives. Dont be afraid. love always, marcy

Off to the Bronx Riviera

Standard

Not every infusion center lends itself to the vacation metaphor. The Bruckner Clinic is a little on the gritty end. And life-saving experimental chemotherapy cocktails have their own emotional and physical challenges rarely woven into the vacation experience but, hey, they are just barriers. In hours I fly off with my beloved for 29-hour infusion number two at (ok, near) the Bronx Riviera. Not bad, eh?

We are, actually, excited. We may not get a chance to frolic on a beach but we will get an adventure, time in the big city and time together. IMG_8714For those of you who do get to vacation in the Bronx, send us a postcard from Orchard Beach; we are curious.

I have felt strong for almost a week, my belly feels significantly less full of surging cancer and I am ready for round two.

images

My Own Steamroller

Standard

I never hoped to own heavy equipment that would be my big brother’s dream. But here I am with my own steamroller. imgresIt has just spent four days rolling over me but last night it headed for the garage. Or somewhere. I didn’t look. I snuck out of bed and practiced being alive.

I have joined Team Bruckner and I am not sure it is the easiest team to play on. I trust they will adjust my dosing to accommodate the depth of my four days of post-first-infusion misery. But 29 hours of infusion will probably never be easy. I add in cross-country travels.

My husband just bought a ticket to accompany me when I fly back out next Monday. I don’t envy him the job of chaperoning – it’s half clean up crew and half security. My dose of steroids must be HIGH as the mere folding of a tee shirt can leave me howling in a rage. The dog and husband look fearful when I leave bed. This is not what I want for them or me, a puking madwoman.

Am I extending my life or insuring that all will be able to bear what comes next? This seeking out of the good death at the right time may be for wiser folk than I.

My infusion cocktail is made up of six therapeutic drugs and endless anti-nausea and steroidal perks. I start with the standard cocktail, as (such confidence!) my cancer gets tamed the dose will be tailored and lightened. At the close of day one infusions, a shoulder bag arrives filled with my to-go dose; it’s my overnight pal pumping away. It gives a new angle to purse snatching in the big city. This connects right to a needle in my chest. The cocktail is not specific to my brand of cancer but rather the drugs are selected for how they play off each other, minimizing the cancer’s ability to adapt and maximizing the impact of each drug.

Since I am coming off a year of immunotherapy (which they are a fan of), they hope that they can take the cancer-eating sharks imagesdelivered to my body this last year and wake them up by putting blood in the water aka decaying cancer.

Time to DEVOUR cancer.

Time to DEVOUR cancer.

Hmmm…. sounds good but it always sounds good and reasonable. Too bad I have learned that cancer is entirely unreasonable.

Team Bruckner is a place of hope, a last stop for most. I think it is my only chance of getting past my cancer’s outburst but I recognize it as a big gamble and the verdict will stay out for quite a bit longer. But hey, I have a steamroller I’d love to loan out.images

They Found My Uterus!

Standard

It’s been a sobering week. Did I expect my cancer to return to visible status? Yes.

I thought it would wait through the summer and I never considered it would return in an immediately life threatening way. But it did and I get the situation.

My response was action since I still hold out for obtaining the greedy age of 72. Between my new physical realities, deep sadness and coordinating three major cancer centers in three states, even with great helpers, I was exhausted. Yesterday my only task was to get to OHSU and piss in a cup. And I said “no.”

I opted for a chair in the gorgeous sunshine, perfect breeze and faced my grim reality with my heart not my head. I might just have to say goodbye.

My husband intuited my reality and arrived home early. We sat together and talked end of life issues. It was lovely. It is what is within our control. The mood was deep and yet light and oh-so-tender.

This morning I awoke to an emailed copy of UPenn’s reading of my ct scan of last week. One issue I had had was, “where did my uterus go, when did I have a hysterectomy and why a vaginal cuff?”

Where is Marcy's uterus?

Where is Marcy’s uterus?

But when your belly is full of cancer, you let go of the esoteric questions. The vast majority of women with ovarian cancer have a full hysterectomy as part of their debulking surgery. I did not. For some reason when I transferred to OHSU they decided I had a hysterectomy. It’s led to a little chaos like being denied a pap smear because I don’t have a cervix. I don’t. How do you know that? I think I have a cervix. Who snuck in and grabbed it and why? These are the kind of mess-ups that entertain me too much.

So, I have wondered out loud about these missing body parts. It’s just so perfect: “Grief Stricken Woman Loses Uterus.” A deserving headline for somewhere.Unknown-1

And then this morning at 7 am UPenn informed me that they found my uterus. It is just where it is supposed to be! I have a cervix, no vaginal cuff and, sigh, still a belly full of cancer that they declared having greater spread then OHSU. You win some. You lose some.

I sit with my grief in my heart, it is very real, but I refuse to lose my wit and sense of what I love about being alive.

As I pack a suitcase full of pills for my Monday travels, I sigh at each new bottle that offers to offset some side effect of treatment. I will come back feeling much more poorly. These drugs help and hinder. I pack not quite believing that my short break is over but knowing that if the sun is shinning when I am in NYC that will be enjoyed lavishly by me because that is within my control.images-1

Summer 2014 Vacation Plans Take Shape

Standard

I am off for a new vacation adventure — destination New York City. Most of the summer tourists might be checking out Broadway or the beach but not me, I am heading to Bruckner Oncology.

Bruckner Oncology

Bruckner Oncology

My volunteer travel agent, Carole Zoom, interrupted her final wedding details to find last minute tickets. She even threw in some of her own frequent flyer miles. How to say, “Thank you.” I hope to meet her for the first time later this summer.

Another friend in NYC, Jenny Levison, has map quested my every move upon arrival, is seeing if she can help with rides and made her home available. Despite her husband’s sons wedding being this Friday. She just kind of dropped everything and made this sound like her plan for the week. My mom and sister are now vying to see who wins the chaperone ticket for this trip. I am feeling wildly popular and loving it.

The ever intrepid Holly Pruett, quarter backed without question getting my massive files to NYC, and the doctor to review, comment and schedule me for this next week. The staff seem great, the doctor incisive in how he has already parsed four years of treatment history into a winning plan for circumventing my aggressive cancer despite my high failure rate with chemo.

He is known for treating us chemo failures, a large group of cancer patients that usually just die. He admires my existing treatment team and will work with them and even feels he can compliment the immunotherapy trial start up effort while he stabilizes me until my turn comes up for the T Cell Depletion Part Two, presumably this winter.

Other friends have brought in cheer, food and flowers to keep the modestly catatonic Mike and I of good spirits.

I have cried for a total of 60 seconds. I know this news is dire. I also heard my body SCREAMING, got tested and have felt my body settle down since the results came in.

I had a back up plan researched and it played out perfectly. Dr. Bruckner was where I wanted to go if things went bad. Everything has only confirmed that plan.

I value my local doctor a lot but knew as soon as she shared her treatment proposal that it was a path towards death – it wouldn’t work for me. Some day I might select those drugs but not now. She accepted that. I have had two surgical consults and they both said the exact same things about the amount of cancer I currently have leaving me inoperable. I don’t agree with that but I accept that – they were quite certain.

I feel hopeful. Not for a cure, ha!, but for continuing on the path assigned me. My body feels strong. My naturopath is working to address my blood sugar issues that probably caused my loss of consciousness earlier this week. And two days that total sixteen hours of infusion, well, that’s gotta do something. Right?

Stay tuned.

warmly, marcy

Goodbye Sweet Cancer Vacation

Standard

My last infusion of chemotherapy was March 15th. I realized that I might be getting a chemo break aka cancer vacation in April just as some of the heaviest detoxing from avistan was happening (relentless headaches and body pain.) My two docs officially agreed to give me the summer off in May. Loving the concept, I greedily pushed to delay testing until August and the answer was yes!

Oregon’s weather during these same spring months was a rare and absolute delight – day after day. Most agree they have never seen a more perfect spring. I took delight hour by hour. My many walks each day slowed by the need to smell too many flowers. My husband finished off our patio giving me a dream location to visit and rest between walks and the occasional task.

The first month I moved slowly with recovery, the second month I jammed in a four state solo road trip across the great northwest then returned home to transform a barren gravel area into a newly envisioned meditation loop. I cleared the area, I gathered 36 boulders from other places into an oval, I dug down two feet to loosen the hard gravel and then relocated five yards of compost berming up my new “meditation garden.” (More on that topic soon.)

My Meditation Garden!

My Meditation Garden!

Done I collapsed thinking, “wow, I might just have overdone these past few weeks.” But I was pleased as I took to rest and recovery. Every day I seemed to need more rest and had a few new complaints but I stayed slowed down and waited to feel better.

Yesterday I sent the below email to friends. My cancer vacation is over. It was a lovely break.

Subject: Marcy’s cancer takes a gallop

As some of you know the last two weeks I have faced dramatic changes in how I have felt. Technically, for the first time feeling “symptomatic.” It was almost hard to take seriously cos the changes are so fast and severe. Almost.

I asked for testing Monday. It was approved Tuesday. Tests happened yesterday. Doc called this morning before 8 am to say the cancer is very active and moving fast. She said she would be back in touch asap w.a plan and “we would fight.” Her immediate suggestion being topotecan and avistan.

I am working to get my files to UPenn hoping they might be game for surgery. I dont believe my cancer is very responsive to chemo. My doc here is not open to surgery. I have not yet seen the report myself but I feel it – deeply and constantly. It is effecting my breathing and moment by moment comfort.

Mike is sad and I am pretty focused with little room for emotions. We had the separate drama of me losing consciousness Tuesday morning. He didn’t like finding me collapsed on the floor bleeding. We think it’s a food/sugar related thing but it’s hard to get a doctor to comment on that right now.

So, not much more to say. I had felt pretty cocky that this was not my year to die but I dont feel cocky about anything right now. Cancer is relentless and random and I am a teeny tiny pawn doing what I can. YOUR support means so much. Right now we have nothing much to say – this is all that we know. Two weeks ago we were on a cancer vacation. ;  ) Neither one of us has much ability to manage a conversation right now unless you are a doc.

I do value what a very lovely spring this has been. Watch out – it’s Friday the 13th out there. Stay safe.

lots of love, marcy10152646_10152422082198708_4231432561548744429_n

Good Deaths, Good Dying

Standard

The opening line of my friend’s sister’s obituary moved me with its gentle force. The sentence named the deceased, summarized a few of her accomplishments and then announced that she had, …”peacefully ended her own life at her home on May 20, 2014.” The photo shows an attractive woman brimming with life. She decided how to cope with her diagnosis of Alzheimer’s Disease when diagnosed four years prior. From what her sister narrates, and another lovely photo captures the day prior to her death, this woman decided to have a good death.

Beloved sisters saying goodbye.

Beloved sisters saying goodbye.

A good death is not that easy to come by. I am no expert but I have been in the club of the dying for the last four years and I have watched quite a few deaths happen, more than quite a few. Labeling a death “good” or “bad” is risky but for me they seem to fall into those simplistic categories. A good death is the one we want. Right? We might vary in how we describe it with some imaging a dramatic ball of unanticipated flame as an ideal way to end it all but for most of us, the notion of having a period of closure with loved ones, then a selected few gathered around in a familiar and peaceful spot then taking your final breathes with no active pain or resistance seems ideal.

It should be easy to stage a good death but neither life nor death is always amenable to choreography. Barriers to a good death include individuals not able to express a concrete vision, usually because they don’t have a safe and encouraging circle within which to plan, let alone not living in a society that accommodates such choices – individuals, community and society.

I watch another friend journey towards a good death. In March 2014 it was not on the horizon. By April she had a stage IV lung cancer diagnosis and a “treatment plan” of “morphine and home hospice.” By the end of May she started on oxygen. Her communiqués throughout never feature her diagnosis or prognosis. A woman of few written words she focuses them as the below sample shares:

May 21, 2014 sunny day-planted snow peas and asters

May 26, 2014 sun peaking in and I have plants to get in dirt

June 2 WONDERFUL FEW DAYS WITH MY COUSINS FROM WI SO WARM AND FUNNY AND JUST THE BEST!

I love watching her revel in every passing moment. Her cancer and approaching death she dismisses with a brief mention of her fear of pain as the cancer grows but her hospice team remind her of their skills and so she heads back out to the dirt, the view of the mountains and I appreciate that a good death is proceeded by a good dying support team.

Another day and another post will look at how a society can join this process.

Facing Chemo – A Personal Perspective

Standard

I was asked to write the below this week. Done, I am now attacking my work space, an intimidating task as I hoard EVERYTHING just in case it could be used in a future project. I want clean. I want work surfaces. But my evil twin brings home every tossed aside item I come across. This cleaning of the art space is a soulful negotiation between my two selves.

beloved clutter

beloved clutter

So rather than write a new blog post, I share what I just wrote for something else, hoping it just might serve a purpose here.

Spilling out on to the floor!

Spilling out on to the floor!

warmly, marcy

Chemo: How I Faced It, Tips I Might Share – A Personal Perspective

A photo documents me beaming out as the very first chemo drip started. My long hair, a source of life long pride, was having a good hair day. A table was laden with healthy foods and drink. I look strong and hopeful. The truth is moments later I asked everyone to leave, turned off the lights and I lay there crying the slow, quiet tears of defeat that seemed to befit a younger stage IV ovarian cancer patient.

My six frontline chemotherapies were pretty standard. No real crises outside of the ongoing saga to find a willing vein. Oh, to have had the starting wisdom of a port! Eventually I got “plugged in”, infused and left, counting off one more chemo treatment until they were done, as was all my bodily hair, and I walked out to build a life in remission.

I approached frontline chemo as an endurance test. I rigorously took notes and followed them attentively. I started a “blackout period” free of all supplements and green tea the day prior to each infusion that lasted for the two days after infusion. A support team coordinated having food available and people to look in the days I would feel the sickliest. The days, in fact, when the last thing I wanted were visitors. They were assigned to bring a book and leave me be, that is if I didn’t head them off before arrival with assurances of just how fine I was. Compared to the horror stories of imagined chemo, I had more good days then bad albeit always weary in a newfound way. I walked every day. I ate well. I enrolled in a local clinic for immune deficient people that offered weekly treatments of acupuncture, shiatsu (Chinese massage), and access to a cancer-trained naturopath who assigned supplements that my Western team of medical experts then approved me to take. East met West courtesy of my body.

I was recovering from surgeries to my chest and abdomen and the news that I had one of the worst cancer diagnosis imaginable. Shock, grief and a raw primal fear I had never before experienced were daily components of my initial reality. The routines of chemo survival helped me by being concrete.

My husband and I moved in with friends in the city when it was obvious I faced a huge medical phase. This decision allowed us to under-function initially as friends took over being the competent leads. They told us what to do when. This allowed us space for walking through our emotions. Living with friends infused such a sober period with joy, love and laughter. I don’t know how we would have handled this same crisis at our beloved home in the woods but I suspect the increased isolation would not have served us well.

Four years later, I am a chemo pro. My port is a dear friend and I have different tactics for the different chemo regimes offered up. My life is good; I look healthy and bike or walk everywhere. I feel strong and hopeful most of the time. I have pride in a new head of hair even if shorter.

Almost One Full Year

Standard

This May 27th 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 22nd 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

Camp Mak-A-Dream

Standard

“No, No. Don’t make me go!” pretty much summed up how I felt as I lined up my gear for departure. I was stuck. I had promised to attend, a slot was held and my gentle husband expressed rare firmness as he guided me to the door. The rental car arrived and I was on my way in a snappy red car. My mood improved within minutes and I knew the decision to take this solo quest across four states, 700 miles and a vast, low population region to gather with other ovarian cancer sisters from across the country was more than sound.

Camp Mak-A-Dream was my destination. cmd-20th-logoOriginally designed for children with cancer, it now adds in sessions for women with ovarian or other (non-breast) cancers – an under-served population. I have enough friends that are camp zealots to apply eventually for one of the free slots (It’s all free!) even though I was reluctant to attend “camp.” Would it be one more humiliation in my new norm – life in cancer world?  But the new norm is all about letting go of ego; few of us make it through frontline treatments without losing control of every possible bodily function. Hairless and facing death, you are challenged to let go of all presumptions about what makes you important.

Nonetheless, choosing camp over an annual gathering of my organizing colleagues seemed a harsh statement. But I went to regain my groove.

Diagnosed in April 2010. Recurred in October of 2011. Still in my first recurrence two years and seven months later, it seems that I am now taking a rebuilding break from treatment to test my body. Rather than just staring into the endless abyss of treatment towards death, I am committed to re-entering the world of living. I wanted the daring of a twelve-hour drive alone through such a massive landscape to remind myself of freedom from treatment. Where better to re-prioritize my life then with a group of sisters who need no back-story.

I arrived a day late to a room full of women partying hard and yet quick to abandon their fun to greet me. I settled into my assigned cabin, found the Art Barn

Marcy's Camp Craft

Marcy’s Camp Craft

and, once oriented, bedded down to ready for a full weekend of activities. Time to climb the climbing wall, ride horses, zip line, attend a sex discussion for women living with hacked into bodies, screen the most excellent movie N.E.D (No Evidence of Disease – the rock band of GYN-Oncologists committed to giving solace to those living with disease and educating on symptoms.) And more….OUR RockBand!

The landscape is lovely. photo 3The camp is built around a subtly steep butte that we are all challenged to climb and we do, at paces that befit our bodies’ status, but no one avoided the challenge. Impressive indeed.

The staff and volunteers create a culture of cheer. It is a cheer that pervades the camp but never crowds out the awareness of mortality each women carries, the 18 deaths of campers in the past year are honored, the women in current crisis or hospice are talked about and tears of sadness blend in well as we exchange treatment realities and hopes. It is a setting of Livingly Dying.

I will close with what I loved most – the women supporting each other with mirth and attentiveness as we took on the challenge of rebuilding confidence in life. The zip line requires that you step off from the tree house ledge into open air. That step is huge. Some women froze as the minutes ticked on. From below we would cheer, reminding the temporarily stuck person that this was nothing compared to what we have already lived through – we cheered for however long it took. And then we each jumped into the abyss of life.

It's hard!

It’s hard!

Anniversaries

Standard

April is my cancer anniversary month. It marks when I bid goodbye to my intended life (so presumptuous!). Initially there was a huge divide between my life BC, before cancer, and WC, with cancer. I am four years into my new life and it more than not resembles my old. I have reclaimed meaning beyond my medical appointments. Cancer is not ALL I think about, instead it is a new nuisance much as my before cancer life was filled with nuisances.

I retain respect for the unending panic that subsumed me when informed I was terminally ill. I make room in my life to reach out to the newly diagnosed knowing the fear, as well as the power of role models – people living with cancer and people in treatment.

In August 2010 Christopher Hitchens shared the sentence that most resonated with me “…but now that I view the scene in retrospect I see it as a very gentle and firm deportation, taking me from the country of the well across the stark frontier that marks off the land of malady.” He never got a chance to rebuild with cancer as he died in frontline treatment.

I appreciate my years of living with cancer but I suspect I will never celebrate my cancerversary with any cockiness or zest. I walk on tiptoes, still, always, but content. I am here, I am here, I am here!images

Below I share my first communication post diagnosis. I hope and suspect that I will never again experience such despair.

Journey With Cancer – The First Hello
Written 45 days after diagnosis (June 2010) and my first formal communication to friends and supporters.

April 20th, 2010 at 6 pm, I park on the side of an Oregon highway waiting for a return call from a doctor. It is gray. I learn that I have “advanced cancer” in a brief call. 36 hours later that diagnosis is refined to Stage IV Ovarian Cancer. There is no Stage V.

In the diagnostic roller coaster leading up to this call I have bartered endlessly, assuring myself of how accepting I could be of any diagnosis but cancer. Congestive heart failure, sure. Rheumatoid arthritis, easy. A fungal infection with a 25% risk of death, absolutely. I share my bargaining chits during various emergency consults where anonymous healers attempt to figure out why the lung of a healthy, fit woman has collapsed. My negotiations fail to amuse a single doctor.

April 22, 2010: it is Earth Day and two days after that initial call. It’s also day three of the oil gusher in the Gulf; it’s the day my dearly departed little brother would have turned 43; and it is the day I am handed my formal death sentence. Any show of control collapses. I have drawn the shortest straw in my diagnostic bundle. My life as I had constructed it comes to a close. Crash, boom! Any illusion of free will has been replaced by the will to live.

It is 45 days later now. I have been coming to terms with my short straw. I see my job as using acceptance to construct a new life, however brief. In recent weeks I try on many faces including wise, gracious, funny and sad but I am never as genuinely sad as when I walk out of my Ovarian Cancer Support Group meetings. It is then I feel in the deepest pit of my stomach the very imminent reality of my death. God damn.

Feeling my death is so raw, unlike anything I have felt before. Thinking about my death stays a mere exercise of intellect – it is a removed and obvious truth that I can surely handle. Feeling death is so incredibly sloppy. Slow tears trickle out as I move towards a very different type of acceptance and grief. There is nothing for me to give permission to in this experience. Death is coming for me and it could be coming fast. In allowing myself to feel the reality of death, my stomach lurches endlessly, radiating out in cold, sharp spasms. It is as though I’m enduring a constant replay of the dream-fall when sleeping – the one where the stomach heaves you awake just as you realize you will hit bottom. But this is real and there is no dream to awaken from. This is a Stage IV Ovarian Cancer diagnosis when you have suspended thinking and grasped TRUTH.

I am re-born in this free fall. I am re-born to the council of my medical team, “You must start living as if the next three months are your last. And when you are still alive at the close, make a new three month plan.” This is living with Stage IV Ovarian Cancer. It is a sneaky diagnosis that will allow me to look and feel great as the cancer makes its own decisions on longevity. It will decide which three months are my last. We will all find out together as the final three months dawn.

I believe I can do this. I will learn to live in three-month intervals. I will hope and dream and build in smaller allocations of time. But am I going to do this in my heart or in my head? In my head it is a mere storyline I can make interesting, wise and abstract. In my heart it is a constant tremor radiating from my stomach as I fall to my death several times a day or, sometimes, several times an hour. I am offered drugs to derail the anxiety as I fall, but what do I lose if I take the edge off? And, if I don’t take the edge off, how will I get anything done or feel any joy or feel anything other than desperation?

45 days in to my new reality and I am bald. My signature long blond hair is gone. Catching a glance in a mirror is jarring, demoralizing. Why this overt humiliation now?

My living quarters are reduced to a single room generously loaned by dear friends to allow me easy access to treatment. They shower me with love, laughter and attention. My middle class American life has been whittled down to what will fit in a few bins. The bins taunt me with lessons of detachment. Must everything now be about preparing me to leave this world?

I have started to vanish. I can sense colleagues and friends, overwhelmed with the demands of their own lives, cutting me out of the day-to-day flow of work-based communication, so as “not to derail me from healing”. I crave updates about everything that formerly was my life. It’s been a mere 45 days and my erasure from the news of the day is underway. Does no one else see the irony of not distracting me from getting well? So many ironies at Stage IV.

There is so much more to acknowledge, like the bundles of love sent my way through cards, food and good reading material. As I free fall, kindness envelops me and cushions such a scary moment with light and possibilities. As we all struggle to find our best place in this very real drama please don’t fear making mistakes. Cancer is a mistake. Reaching out to me will never be a mistake.

I am lonely and scared. I am like a little Who from Horton Hears a Who — hanging on a thistle screaming out, “I am here, I am here, I am here.” Please hear me, love me and help me live this last phase of life as completely as possible. Just don’t rush my disappearance. Please.images

Marcy Westerling
Oregon • June 10, 2010

Cone of Happiness

Standard

It is with great relief and gratitude that I close out a year of arduous and, possibly, effective treatment treks from Oregon to Philadelphia for my recurrent stage iv ovarian cancer.

Cone of Happiness

Cone of Happiness

I first arrived at UPenn’s Perelman Center for Advanced Medicine on April 4th, 2013. It had taken me twenty months to qualify for this tentative visit. Paperwork was signed on May 8th, Aphereisis #1 completed on May 22nd with my starting round of treatment June 5th and 6th of 2013. On March 12th and 13th 2014 I completed my 15th trek to Philly and my 11th round of treatment not knowing it would be my last. But it looks like that was my closing treatments for the part one of this clinical trial! Wow!

It’s been a complicated month since I lowered the Cone of Silence. It is never easy to interpret test results without the hands-on experts leading you and my great UPenn doc was gone until April 10th. The Internet told me a pericardial effusion was a bad sign. On April 17th, my doc could finally advise me from looking at the actual scans that the size of my effusion, a mere 1-2 cm of fluid around the heart, was not a concern. (Another probable side effect of Avistan.)

While waiting to understand my March test results, my body was increasingly crashing from the burdens of Avistan, a drug I knew I was set to go off, which tempered my complaints. What I did not expect was on April 10th UPenn offered that in lieu of dropping Avistan, they would give me a month off of treatment and add a day to my next proposed treatment cycle to determine if they could administer the Avistan. My heart dropped a little. I wasn’t sure I was up for more travel and more Avistan but I did not want to be cavalier about stopping participation in this trial given all that it has meant for extending my life.

Luckily, I had an appointment with my Oregon oncologist scheduled for the next day – my first visit to OHSU (Oregon Health Sciences University) in a year! As I biked to OHSU the next morning I found tears of joy on my face – it was wonderful to be enjoying a commute to my medical world. Entering OHSU-land (the largest employer in the city of Portland) I was awed by how affirming I find this community. I park my bike with hundreds of others. I get my free ticket for a jolly tram that arrives like a descending sculpture over my head and takes me to the top of the hill as if on an adventure versus a medical treadmill. It’s Tulip Sales Day so bright colored blooms are being sold for five dollars to support some good cause. My appointment is in the women’s center, which offers huge windows, a play area for children and adults on a wrap around balcony outside, all taking in the awesome view of mountains. Every moment at OSHU gentles the medical woes with positive possibilities. It is not so bad being sick amid a culture dedicated to hope and zest. Oh, I wanted to come home for treatment.

My appointment started early and my lovely, calm Doctor arrived with all my recent test results and said, “Wow, aren’t you doing great!” I explain that I have four vaccines left and she asserted before I have even biased her answer, “No, I think you are done. I think you have chosen a resolute and courageous path. You have gotten a lot of benefit and you will probably get no more.” I could have jumped in her lap and wept. Instead I listed my medical woes and she decisively attributed them all to Avistan, a drug she also believes in and dispenses often. But my body needs a break.

I await my two great docs deciding what is the proposed treatment plan for me here in Oregon. It is now my body’s turn to prove what it has learned from the Part One Autologous OC-DC Vaccines. I intend to cheer on my rebooted immune system in tracking down and eliminating new ovarian cancer cells. Or I may recur and get in line for a return to UPenn for the Part Two T Cell Infusion. I am fortunate to count down to either option.

May we build a world where all diseased people find they have positive options for getting diagnosed, finding treatment options and not being burdened with a payment plan. Thanks to this clinical trial, I might have a bit more time to contribute to that effort! Let’s add that to my to do list. much love, marcy

New To Do List

New To Do List

Oopsie Doopsie!

Standard

I hope everyone enjoyed the youtube of my friend Annie explaining why oil trains criss crossing the world are not sane nor safe. But, of course, I was not trying to educate on that important topic.

So here you go – the real youtube -

https://www.youtube.com/watch?v=365W0sJq8BE

And thanks for being such helpful readers. Two folks kindly corrected my silly lapse in calling my RECIST read of the ct scan a resist read last time. Two oopsies in a row! It takes a village to keep a blog accurate.

What the Heck is Livingly Dying, Anyway?

Standard

I strive to embrace livingly dying, a phrase I credit to the late Christopher Hitchens even as I co-opt his language. I see it as staring at imminent mortality and yet residing in the world of the living – finding the balance. How do you experience the concept?

Below I share a youtube that a filmmaker, Gerard Ungerman, made this past winter of me grappling with the topic as part of his Respectful Revolution series.

As you have a few minutes, please chime in with your perspective in the comment section at the close of this post.

The correct you tube is

https://www.youtube.com/watch?v=365W0sJq8BE

Another fine but unrelated one is here – I goofed in the original post  https://www.youtube.com/watch?v=6OK8Nut6y1U

Warmly, marcy

Goodbye Avistan and Final Scan Results

Standard

The final results of my March ct scan are in, the RECIST read. The radiologist contracted for the deeper read for this trial signed off on my scan as “no disease progression.” In fact, there was some reduction of disease in the abdomen. I am still trying to get answers about the pericardial effusion but the doctor is out until April 10th so I will content myself with everyone else’s lack of concern! Actually, they see the enlarged lymph nodes as a possible indicator of my immune system fighting per vaccine intent.

Why does my marker steadily rise? How to understand the aggravated lymph nodes and fluid around my heart? For now they are simple reminders that I am in a Phase One Clinical Trial trying to teach my body to fight back my aggressive ovarian cancer. There are many mysteries in this process.

I sometimes feel like the boy in the hills crying, “Wolf.” But the purpose of this blog is to make real life with terminal disease – constant testing, relentless waiting and then unclear results are a significant, routine burden.

The roller coaster of disease ups and downs, engulfed in bigger woes.

The roller coaster of disease ups and downs, engulfed in bigger woes.

For most of 2013 testing was relatively easy because my marker was so stable but as the marker rises, my friends and I with terminal disease find we wait for the other shoe to drop. Stable pronouncements don’t calm as much as they should. But I am determined to accept this news as is – good!

Other news was unexpected. I need to stop taking Avistan, a core drug in the trial, because I have moved into an unsafe range. UPenn is rewriting the maintenance protocol in the hopes that the external review bodies will approve my staying in the trial. I don’t have anxiety about what happens. (My lack of anxiety is also because I am assuming that I will be able to go back on Avistan eventually or still opt in to the Part Two T-Cell Phase when relevant if I take a break from the drug now.)

Avistan is the drug I dragged my heels on starting for 8 months. I was supposed to start with my first recurrence in Autumn 2011. For months I stalled, often calling off the start in the final week even while knowing how lucky I was to have access to this incredibly expensive new drug that many countries and insurance companies refuse to pay for.

I distrusted Avistan for my own hard to justify reasons. It is actually not a chemotherapy agent but rather a “biologic” that works to cut off the blood supply to existing tumors, killing them. When I first started treatment back in spring 2010, I started in a Phase Three Clinical Trial where 2 out of 3 patients were given a trial biologic anti-angiogenic – I still don’t know if I was in the placebo arm or not. It was the marketing overkill, price tag and current reality of what it takes to bring a drug to market that fueled my distrust as well as the rumors that those of us who took the miracle drug got short term payoffs but when the cancer learned to go round it, the result was relentless. I took those rumors to heart. And it is a drug too new to even be approved for ovarian cancer or for anyone to know that proper dosing or use of.

The UPenn team really believes in Avistan and that has lessened my fears. I have now been on Avistan for over two years and my body has gradually been starved by protein being spilled into the urine. Now, I am at grade three status and the risks are too dire for my kidneys. Avistan’s side effects always kicked my butt. Maybe it was payback for my reluctance. Unrelenting nose pain and ever increasing headaches lowered my daily quality of life. I feel joy as I imagine approaching relief of these big discomferts. Ahhhh…..goodbye Avistan for now.

Thank you, dear readers, for staying with me on this roller coaster of disease. I enter a new year ever hopeful! Happy birthday to me.IMG_4850_3

Cone of Silence

Standard

The Cone of Silence is a repeated spoof from Get Smart. It means little. I am lowering my own Cone of Silence as I await a more detailed read of my test results from last week.images

The preliminary intimations show cancer on the move in the chest including a pericardial effusion around the heart. Not good. I will update everyone when I take off my Cone of Silence, most likely when there is a plan of action.

I distract myself with Spring busting out all over – I saw my first trillium blooms this morning. Ahhh….. enjoy, marcy

images

Off On Vacation I Go!

Standard

For those who track, yes, it is technically Philly Trek #15, Treatment #11 but I have decided to make it a vacation instead. Alas, I could not join my gal pals in Tucson this week for frolic in the sun. And the east coast in March is not a traditional spring break destination but why care.

My sister and I are meeting up for a vacation that will include spa treatments (albeit in the chemo lounge), health tucks courtesy of a few scans, and then a day in NYC with colleagues. I am intending to be quite content with this!9.22.07 269

Philly Trek #14, Treatment #10 – Performance Art

Standard

It’s been a while since I have shared a straight up report on my cross-country treks for medical care. I made my initial visit to Philadelphia, Trek # 1, the first week of April 2013  – a pre-intake intake, hoping to position myself, finally, for admission into the Autologous OC-DC Vaccine Phase One Clinical Trial. I had pursued entrance to this trial for the prior 20 months. We had heard a lot of “no’s” but now we were hearing “yes, maybe.” My cancer was looking stable enough to gain me entrance even if I was still amid my first recurrence. Eleven months later, still amid my first recurrence, it was time for Philly Trek #14, Treatment #10.

Often I have felt like a performance artist when completing my Philly Treks. Now, I model the courageous patient, now I crumble in a hospital bed, and don’t look now, because here the heroine, me, weeps on a crowded bridge as she shakes and vomits up her pathetic orange juice in the fresh snow – again and again and again and again, leaving a small and dainty pattern of no great offence. I, the artist, then continue on towards my housing and a new day that can only be better.

Performance Art

Performance Art

Trek 14, the February trek described in the paragraph above, was not dainty. It’s start was delayed a week by a last minute call from UPenn telling me to find new flights. My luggage already stood packed at the door as I awaited my ride to the airport. A bodacious storm (adjective lifted from one weather forecast) was predicted for the final day of my scheduled treatment, a day that requires a team of ten exact people to be at their posts. The Philadelphia weather projection made complete attendance unlikely. Cancelled, I was.

There could be no complications for my new treatment dates the next week or I would be out of compliance with the trial. Weather forecasts looked good at all ends of my travel but the night before my early morning flight to Philly an airline email informed me both flights were cancelled. I got the last seat in the last flights of the next day, feeling lucky, until I arrived at the Denver airport to see FLIGHT CANCELLED in the monitor. Yes, three flights cancelled in less than 24 hours and the weather was mighty tame. I rushed for assistance only to find not only no assistance but also rudeness. Southwest Airlines, I learn, does not shift you to another airline – and their next flight out to Philly was in 36 hours – too late for me to meet the chemo requirement. When I tried to engage them in problem solving (possible flights that might get me towards Philly on their airline) they said “no” and literally turned their backs on me. Oh my.

Only MY flight cancelled!

Only MY flight cancelled!

While a friend, just completing her own not fun medical procedure, stepped in to problem solve options over the phone, I still felt alone and very, very stressed – this was happening on top of a full week of travel stresses. After an additional $500 of expense and a few tense hours later I was set for the only remaining flight to leave the Denver airport for Philadelphia that night. It was on United and I arrived so late that the trains had stopped running requiring the additional expense of a cab. I was a wreck.

I showed up to treatment the next morning already sick with a migraine. My health did not improve but I did value the team’s dedication to easing my pain.

I decided the rigors of travel on top of treatment just might be too much for this gal.

I have testing and results along with my March treatment – always a dicey combination. My sister volunteered to fly in. It should be a great time to assess. My lab work continues to insinuate disease progression. My December tests were highly contradictory. Maybe this month’s results will offer clarity, always welcome.

What will the tests reveal?

What will the tests reveal?

I have had enough time and new information to feel calm with any outcome.

I am tired of travelling cross-country for monthly medical care and, luckily, this isn’t an endless drill. I either close out Part One in the near future, earning a travel break, or it’s time to move on to Part Two. The adventures of Part Two, T-Cell Infusion, dull travel concerns since I will be grounded in Philly until recovered which could take up to six weeks.

So, stay tuned for what comes next.images-2

The Fault In Our Stars

Standard

One good recipe for bypassing self-pity is to exchange stories. The telling relieves you: the hearing amazes you. “Oh, my!” you realize, “it’s all okay in some wacky-grossly-unfair-but-just-fine way.” Sometimes that exchange can happen via a good book. The Fault In Our Stars by John Green is one such book. I got hooked fast as the lead character, Hazel, displayed honesty I could relate to as she narrated the crass realities of a cancer support group for teens.

I share a review from National Public Radio. I cut and paste below for ease. It’s a little tip on a book worth getting your hands on. Enjoy.

Warmly, marcy

The Fault In Our Stars by John Green

The Fault In Our Stars by John Green

‘The Fault In Our Stars': Love In A Time Of Cancer by RACHEL SYME January 17, 2012 5:28 PM

The Fault in Our Stars by John Green

In his Pulitzer Prize–winning book The Emperor of All Maladies: A Biography of Cancer, Siddhartha Mukherjee writes that as recently as the 1950s, cancer was so feared and taboo that the New York Times refused to print the word in a support-group advertisement. It was the second-leading cause of death in the United States then — just as it is now — but it was as mysterious to most people as mortality itself. There is something monstrous about a disease that kills by wanting to live; cancer’s goal is to grow and prosper, with absolutely no regard for its host. It makes sense that people couldn’t speak about it — it’s not easy to commiserate about a nightmare.

And yet, human instinct tells us to band together to fight our enemies, even on the cellular level. Gradually, with scientific breakthroughs and education, cancer became less of a mum word and more of a buzzword. Hollywood jumped on the drama surrounding the disease, and soon films like Terms of Endearment and Beaches were keeping tissue companies in business. Novels and magazine articles highlighted survivor stories; television started adding characters afflicted with illness. Even Sex and the City‘s carousing Samantha had her share of chemo.

In recent years, the trend has gone one step beyond talking about cancer — the goal now, at least for pop culture, is to find the humor in it. Fortunately, John Green is the kind of writer to deliver it.

John Green is the New York Times best-selling author of Looking for Alaska, An Abundance of Katherines and Paper Towns.

Ladies, Put Down the Talcum Powder. Back Away for Everyone’s Safety.

Standard

My older sister schooled me in many a feminine approach to life. Talcum powder sprinkled on the scalp soaked up oil slicks between showers. We stuck with powdering the scalp versus the, apparently, more common practice of powdering the genitals. The scalp may be far from the ovaries but both of us ended up with ovarian cancer – she at age 35, me at age 50.

Risky for your health?

Risky for your health?

I have no idea what happens to all those babies we sprinkle daily with talcum powder.

What I now know is “One report published in 1982 by the New York Times found that Johnson & Johnson was aware that studies indicated women were three times as likely to develop ovarian cancer if they used talcum powder on their genitals.”* And yet the products continue to stay on store shelves being marketed with no warning labels.

This Can Lead to Ovarian Cancer

This Can Lead to Ovarian Cancer

In October of 2013 “a South Dakota jury has determined that Johnson & Johnson failed to adequately warn consumers about the risk of ovarian cancer from talcum powder products, but no damages were awarded in the case.”* And there still are no warning labels on these same products.

(*http://fortworth.legalexaminer.com/uncategorized/jj-failed-to-warn-about-talcum-body-powder-cancer-risks/)

J & J has long targeted its marketing and products to women and yet they have failed again and again to protect women. An international drug shortage of doxil put ovarian cancer and AIDS patients at risk. J & J was responsible as their sole production plant in the United States was found tainted with urine and glass shards and more. Today a generic version of the drug, imported from India, is all that is available – the FDA fast tracked its approval without the usual tests but now there is evidence that the generic version is not showing significant efficacy. Thanks J & J. I would love to see them apologize, remove dangerous items still for sale and, frankly, pay for some of the anguish they cause.

A law firm is taking on the case. I have not vetted who they are or what they offer but I do share what I know.

Talcum Powder Ovarian Cancer Lawyers Launch New Website – http://www.prweb.com/printer/11542029.htm

http://www.talcumpowderovariancancercenter.com/

The Onder Law Firm’s baby powder cancer attorney team announces a new Talcum Powder Ovarian Cancer Center; a resource to the public, the website provides access to no-obligation baby powder ovarian cancer lawsuit case review with an attorney.

St. Louis, MO (PRWEB) January 31, 2014

A nationally-renowned law firm, known for its work in product safety litigation, announces the launch of the Talcum Powder Ovarian Cancer Center. The Onder Law Firm’s new website is a public resource on baby powder ovarian cancer lawsuits, and includes information about the link between talcum powder and ovarian cancer, as well as answers to frequently asked questions regarding baby powder cancer claims.

Talcum powder ovarian cancer lawsuits gained traction of late, thanks to the conclusion of the first lawsuit for ovarian cancer from baby powder in October of 2013 (Deane Berg v. Johnson & Johnson Consumer Companies, Inc., U.S. District Court, District of South Dakota, Case No. 09-4179). The jury in this federal court case found that Deane Berg, the plaintiff, had developed ovarian cancer as a result of frequent and regular use of Johnson’s Baby Powder and Shower to Shower, two Johnson & Johnson products that contain talcum powder. This court win has served as a catalyst for thousands of women and families of women to step forward to file baby powder ovarian cancer lawsuits. These cases are likely to join forces in a Multi District Litigation.

Scientific studies conducted as early as the 1970s have contributed to a body of research on the link between baby powder and ovarian cancer. Most notably, a meta-analysis published in Anticancer Research in 2003 (http://www.ncbi.nlm.nih.gov/pubmed/12820486/), which reviewed and combined results of nearly a dozen previous studies, concluded that women who use talcum powder in the genital area on a weekly basis have a 33% increased risk of developing ovarian cancer. Talc particles may enter the female reproductive through direct dusting or through the use of feminine products dusted in baby powder. Once inside the body, talc can migrate to the ovaries. Talc particles that reach the ovaries are thought to cause an inflammatory response, yielding conditions that are friendly to the growth of cancer cells, accounting for the increase in risk of developing ovarian cancer. Yet baby powder and other talc product labels have never warned consumers of the cancer risk.

The Onder Law Firm is currently accepting inquiries from women and families of women who have suffered from ovarian cancer and have a history of using baby powder for genital hygiene. Baby powder lawyers are investigating these inquiries for possible talcum powder cancer lawsuits against Johnson & Johnson. The Onder Law Firm has won major settlements for clients in the areas of drug and medical device recalls, as well as product and family safety. The firm is nationally-renowned for its work on window blind strangulation, and has notable expertise in fighting on behalf of individuals against powerful corporations. Women and family members of women who have been diagnosed with ovarian cancer and have used baby powder are eligible for a free evaluation with a talcum powder attorney, and may contact the firm through its Talcum Powder Ovarian Cancer Center website.

The Onder Law Firm also welcomes baby powder lawsuit inquiries from other law firms, either to handle these inquiries or work as co-counsel.

About The Onder Law Firm 
Onder, Shelton, O’Leary & Peterson, LLC is a St. Louis based personal injury law firm handling serious injury and death claims across the country. Its mission is the pursuit of justice, no matter how complex the case or strenuous the effort. Onder, Shelton, O’Leary & Peterson has represented clients throughout the United States, and other firms throughout the nation often seek its experience and expertise on complex litigation. It is a recognized leader in products liability cases such as window blind cord strangulation and pharmaceutical litigation. The Onder Law Firm’s talcum powder cancer lawyers provide information to the public at http://www.talcumpowderovariancancercenter.com/.

Where’s My Valentine?

Standard
Keep A Light On Valentine 2011

Keep a Light On – 1st Valentine Post Diagnosis

I like to imagine friends and family transitioning from Groundhog Day rituals (someone must have some) to Valentines Day anticipation right around now. Hopefully, many become a little more excited at the mailperson’s arrival wondering, “Is this the day Marcy’s annual card arrives?” It seems time to confess that you may have a thirteen-month wait.

Melting Heart Valentines 2013

Melting Heart Valentines 2013

For the first time in eighteen years, I produced no Valentine’s Cards. There is no woeful explanation. I am fine. I am behind. Truth be told I am still working on Christmas gifts for some.

I brought out my art supplies in early January, made a design and then, at a certain point of being overwhelmed with all the deadlines I was missing, shook my head, packed up the supplies and crossed off “make Valentines” from my to do list.WindowValentines

Making such an abrupt departure from my traditions felt quite neutral. I have a certain sense that I will make Valentines in 2015 even if that confidence does not extend to 2016 or beyond. And if I never get to make cards again, well, I will have bigger sorrows to contend with. I leave you instead with this summary of how I started the tradition of making valentines. Maybe, after 18 years, this will be the year that I just make one very special valentine for my life partner, Mike, who reminds me of the power of love every day.

And now the embarrassing story behind my annual ritual! First shared on 2/12/12  I started a tradition 16 years ago now.  Sometimes I explained it by saying, ‘well, I never got my Christmas Cards out so Valentine’s Day became my time’, which is true but not entirely.

The real truth is that 16 years ago there was a human dignity activist that I had worked with for a few years, always enjoying my every interaction with him.  He was a volunteer organizer in the small towns of Forest Grove, Banks, and West Plains where he had lived for the prior 2 decades, building his own cabin in the woods with a family to fill it.  He was passionate about on the ground organizing and had a keen, strategic mind.  He was also terribly cute and kind.  We had fun working together.

Then one day he separated from his wife. We started finding reasons to have one on one meetings to plan a series of economic workshops – we stayed on task but we also never managed to wrap up the project.  After many dinner meetings, Valentine’s Day approached.  Since neither one of us showed tremendous nerve in managing our own desires I came up with a safe way to put my heart out there. It was subtle.

I designed a Valentine’s Day card for all my friends.  I made a linoleum print, carving out the negative space then moving on to the next step of hand printing 200 postcard fronts with a huge heart.  After the days it took for the ink to dry, I then hand addressed all 200 cards.  All these weeks of work so that I could send the one to my crush without looking a fool.  I still remember mailing them with a little kiss.  Two days later, Mike and I had our first official date – a winter hike in the coast range that continued past dark.  And, as they say, the rest is history.

Carving in Process

Carving in Process

After 16 years, you would think I would have a database and process but each January I re-invent who to mail to after I complete the printing.  This year, I never managed a second run and so only 100 cards went out.  I know how many dear friends are not getting them this year and for no good reason beyond I ran out of steam.  But you are in good company, as after that first year Mike never got another card of his own.

Every year I wonder if I will manage to get the cards out.  It takes so much time.  This year the design eluded me.  It has to be simple because of the method.  My design drafts were nice, but the state of my life didn’t match the cuteness factor.  January 18th I got my ct scan results that closed with the dreaded words ‘subtle disease progression noted.’  That night I drew my design, carving it the day after.

“The heart is an organ of fire.”  (A statement I always liked from Michael Ondaatje.)  Barbed wire is all about ominous limitation.  Paper, rock, scissors is a children’s game positing which tool is the strongest in the end.

Barbed Wire Valentine 2012

Barbed Wire Valentine 2012

My love and appreciation to so many as I plod forwards on this journey.  I am still on chemo but drug shifts are around the corner because my body needs a break from ‘the big gun’ of carboplatinum.  This entire cycle has been about delay after delay as my blood counts stay too low for treatment.  It’s a roller coaster.  A time without chemo is not yet imagined – if the disease gets stable I will stay on some maintenance infusion probably of avistan.

Happy Valentine’s Day because what is the option.

with love, marcy

A Friend, Indeed

Standard

One of my original friends in Oregon took on the role of advocate-in-chief when she heard of my diagnosis. She showed up the first night, phone to ear and stayed on the line until she got me the next available appointment with an oncologist. She is always there, often ahead of me in recognizing when I might need more hands-on assistance. She never waivers and has never said, “well, maybe….” in a way that makes me regret asking. She flew to Philly on her own dime for the trial intake interview. She is loyal and effective and most definitely the ‘secret weapon’ that coordinated entry into this clinical trial that required such pursuit.Marcy10:6:12

My diagnosis has impacted my circle of family, friends and colleagues in ways large and small. Holly, my advocate-in-chief, was a highly regarded political consultant when I was diagnosed. Now she is a licensed celebrant with a developing specialty in end of life support. (She is still regarded highly as a political consultant, it is just harder to access her time.)

Holly shared perspectives in the essay below, My Friend Marcy Has Cancer. I Don’t (Yet). Enjoy. Warmly, marcy

As a Funeral Celebrant and organizer of the PDX Death Cafe, death – and what happens before, during, and after – is on my mind quite a lot. And so I thought I should share an essay I started several years back about the big questions. The journal Cactus Heart was good enough to publish it this fall.

My Friend Marcy Has Cancer. I Don’t (Yet).9462551

I.

As the crowd of thousands marched downtown to the site of the Occupy Portland encampment, I left to run an errand. I’d been holding a handmade cardboard sign: “My friend Marcy is WAITLISTED FOR CHEMO – Thanks, Wall Street!”  Many of the people reacting to my sign – whether supportive or averse – thought I was the one waiting for chemo. Even the AP photographer who snapped the picture of my sign that ended up on Internet sites around the world asked, “Is that about you?”

They thought I was the one with cancer. In the coming days, I began to wonder.           

An hour after I left the rally, my belly began to feel like an air pump was inflating a basketball inside me. And I grew cold, so cold, despite my wool socks and heavy Guatemalan wool sweater. My teeth clacked and chattered. By the time I got home from my errands I had to unbutton the jeans that had required a tighter belt notch only that morning.

I forced my stiff, aching muscles up the stairs to my house and cocooned myself in a wool blanket in front of our fireplace. When the wracking chills still wouldn’t subside, my partner Amber found the thermometer. We were stunned when it registered 102.7 degrees. Must be broken. She took her own temperature – normal.

It was about 7:00 p.m. when I reached my doctor, who found it very odd: high fever and severe bloating, but no nausea, vomiting, or diarrhea, which you’d expect with food poisoning or a flu. We agreed that I’d try Tylenol and Gatorade and go to the ER if it got worse.

I woke up in the morning without a fever. But the bloating – I was still so unbearably full I found the idea of eating preposterous. I headed in to see my doctor. They took an abdominal X-ray and sent me home. Once they viewed the film, they wanted an ultrasound. I drove out in Friday afternoon rush hour having drunk the requisite 32 ounces of water – four tall glasses of liquid on top of the basketball in my belly. I was in agony.

I figured I ouldn’t get the results until Monday, but my doctor called and left a message around 6:00 p.m. It wasn’t a reassuring “all clear.” His voice sounded concerned. He told me to call him on Monday.

II.

Marcy’s unexpected diagnosis of Stage IV ovarian cancer had ripped the security blanket off our cozy community. In her early 50s, the poster child for effortless exercise and wholesome diet, Marcy exemplified clean country living. I had barely paused to admit my own emotional response to the pronouncement of her terminal disease. I had swung into action, attempting to impose order on this chaos by taking notes at her doctor’s appointments, organizing brigades of helpers, setting up communications systems.

The Monday morning after my ultrasound, I drove to Marcy’s house to accompany her and her husband, Mike, to see her surgeon, a highly respected gynecological oncologist on whom she had pinned her hopes.

During Marcy’s diagnosis 18 months earlier, Dr. C had gone in through her belly button to remove the small amounts of disease in her abdomen – debulking, they call it – but the cancer had already spread to her chest. Although the surgery and subsequent chemo had produced a blessed remission, her cancer holiday was over.  The disease was clearly on the move once again. Marcy’s meeting with her medical oncologist had left her in despair. She wanted the surgeon to offer something more aggressive, to deliver some hope through scalpel and sutures.

Marcy wore one of her trademark loose skirts. Despite her willowy dancer’s frame she had always favored prairie skirts that allowed her unrestricted movement (and she was constantly in motion). Just before her diagnosis, she had shocked all of her friends by favoring chic new slim corduroy jeans. But the bloating that accompanied her chemo had become, in cancer-speak, her “new normal,” and now it was back to skirts. I was wearing a loose skirt that day, too, to ease the bloat in my own belly. And to hide it.

Over the weekend I’d received an email from one of the national ovarian cancer listservs I had subscribed to, promoting the checklist of early detection symptoms we all need to internalize, like the monthly breast self-exam we were trained to do in the early days of the pink-ribbon movement:

Symptoms of Ovarian Cancer

-                Bloating

-                Pelvic or abdominal pain

-                Difficulty eating or feeling full quickly

-                Urinary symptoms (urgency or frequency)

I said nothing of my weekend worries to Marcy and Mike. An extrovert, I’m used to sharing (perhaps over-sharing) the details of my daily life. But not emotions – especially fears, especially existential fears of the sort that if spoken you imagine might obliterate you through their very utterance. Fears like: could two friends end up with the same supposedly rare cancer? Fears like: am I counting on my friend’s cancer to somehow provide me with immunity? Fears like: am I going to worry myself into getting cancer if I don’t already have it?

I was happy to stuff my own unknowns into the glove compartment for the morning; I preferred the immediacy of their fears to my own. I clamped down the impulse to distract us all with small talk or spiritual-silver-lining reassurances. We drove to the appointment in shared tense silence.

Marcy’s meeting with the surgeon delivered further devastation: he had nothing in his bag of tricks to help her. She fled the claustrophobic confines of the consultation room as soon as he left. I waited to get the paperwork and found Marcy and Mike in the parking lot. If I’d been unsure about conversation on the way there, I knew without a doubt there was nothing I could say now. Marcy was in full internal lockdown, desperate to be out of the car and back in her home doing the touchstone rituals she had devised to help her tolerate the intolerable.

As I pulled into the driveway she opened the door, “Sorry… rude…by myself.” She fled, with Mike not far behind her. I sat in my car getting her records release documents in order and offered a few inadequate words to Mike when he reemerged to fetch the documents. Then I pulled around the corner and called my doctor, expecting to hear reassurance in my ultrasound reading. Instead he told me there was a mass over my left ovary. He wanted an MRI to provide more detail. But first I should get to my gynecologist for an exam.

III.

Cancer World. It’s how writer Steven Shapin describes our modern existence in his review of the book “The Emperor of All Maladies: A Biography of Cancer” by physician Siddartha Mukherjee. Mukherjee calls cancer “the quintessential product of modernity.” Modern advancements mean more of us have cancer. We now outlive the diseases that killed our forebears before they had the chance to get the Big C. And the toxicity of our environment surely breeds more malignancy. How could it be coincidence that my father and his sister’s husband both died young of the same rare brain cancer, having shared no genetic link, only mutual employment in the family’s fuel tank cleaning business during my dad’s summer breaks from college and medical school?

Shapin, in The New Yorker (Nov. 8, 2010), argues that the modern impact of cancer goes beyond those who have the disease. He writes that historically, “The agonizing manner of cancer death was dreaded, but that fear was not centrally situated in the public mind—as it now is.” Shapin describes “two new kinds of beings in the modern cancer world.” One is the lucky patient who is now able to manage her once-fatal cancer as a chronic illness with miracle drugs like Gleevac. But Cancer World is also inhabited by the rest of us who are waiting and watching, “legions of the screened and the tested, who become more and more aware of the dangers battering away at their cells from the external environment and lurking inside, encoded in their genes.”

Just a month before my high fever and basketball belly, a surgeon excised a bad mole from my right tricep. The cells weren’t cancerous, but apparently that’s where they were headed. The mole is gone now, clean to the margins, but even in its absence, it increases my chances of developing a melanoma. So does the fact that my dad had a melanoma (separate from his brain cancer). And that my mom had another form of skin cancer, now known to be predictive of increased risk of the deadliest kind. My annual preventive visits to the dermatologist are now on a six-month schedule.

I’m a bit of an early detection nut. I’m not a hypochondriac (am I?); I don’t spend my time imagining myself filled with disease. But I don’t hesitate to call the doctor when I’m not sure what’s going on in my body. And I do every test they suggest.

I’m the daughter of a doctor, a man who knew he wanted to be a doctor as a young boy despite neither parent having graduated from high school. “He never went through the I-wanna-be-a-fireman-or-cowboy phase like the other little boys,” his older sister told me. “He just wanted to be a doctor.”

Thus I was born into my faith in the medical system. Not a blind faith: I believe that if you tell the doctor what’s going on, he or she will work with you to figure it out and will try to make you well or keep you safe. I have a strong sense of entitlement, being raised the daughter of a doctor, white and well-educated. They work for me, these doctors and diagnosticians. If I have questions, they will answer them.

And so I’ve been thoroughly probed and scanned and dissected. A lump removed from each breast in a procedure that strapped me to a narrow table, my arms pinned out to either side, crucifixion-style. A colonoscopy in my mid-40s. Suspicious moles carved out and shipped to the lab. X-rays, a CT scan, an MRI, and a PET scan to follow a nodule in my lung (nodule: another word for tumor, but writing tumor sounds melodramatic given its eventual disappearance).

And four years earlier I had been diagnosed with a bumper crop of uterine fibroids – inside my uterus; hanging from the outer wall on a stalk like a banana; embedded in the wall of my womb. Because I never had the heavy bleeding or cramping that plagues many women with such growths, the obvious solution, hysterectomy, seemed like overkill to me (fibroids are the leading cause of hysterectomy in the United States). But the bulk of my fibroids, equal to a six-month pregnancy, became tiresome. I felt obstructed from within when I did certain yoga poses, when I bent forward on my bicycle. My gynecologist warned of bowel and bladder difficulties; my chiropractor thought my breathing could be impaired and my skeletal system skewed.

I researched my options and opted for an embolization procedure to reduce the bulk without surgery. A radiologist inserted a catheter through my femoral artery and propelled microscopic pellets through it to block the blood flow from reaching the fibroids. I pictured them withering on the vine. A year later, my gynecologist reported with some amazement – she’d been a skeptic – that they had reduced in size by 50 percent, the optimal result expected from the procedure. Since then, I’d thought little about them, except during my annual pelvic exam as my gynecologist continued to marvel about the fibroids’ reduced dimensions.

IV.

The day after I accompanied Marcy on her futile pilgrimage to her cancer surgeon, I lay on my gynecologist’s exam table. She asked the question that seemed to solve the mystery of what had happened five days earlier.

“Did it feel like what you experienced when you had your embolization?” Yes, I realized, it was exactly like that. I don‘t know why it hadn’t occurred to me sooner. The procedure had involved an overnight stay in the hospital to control the high fever and severe pain that accompanies the death of the fibroid tissue when its blood supply is blocked. Now my gynecologist studied the original MRI that had guided the embolization and felt confident that it was consistent with the ultrasound that had alarmed the radiologist and my primary care physician. She would send both scans back to the radiologist to be sure.

It made sense to me now: some of the remaining fibroid tissue had gone into a death spiral. As it died – became necrotic, to get technical – the sanitation department kicked in. Fire up the incinerator (hello, 102.7 fever) and bring in the scrubbing bubbles of inflammation.

Still, I was relieved to get the call from my gynecologist three weeks later confirming that the radiologist had finally issued the all-clear. For now, anyway. The mass that had rung the alarm bell appeared consistent with the early pictures of the fibroids. But as with my dermatologist, my monitoring interval is now at the half-yearly rather than annual mark.

V.

My friend Marcy has cancer. I don’t. Yet. I belong to that tribe born of modern medical diagnostics: the precancerous. The Worried Well.7:4:10 HPMW

Six months after my belly bloat episode, on the eve of Marcy’s 53rd birthday and the second anniversary of her admittance to Cancer World, I joined her and three of her closest friends for a concert by N.E.D.  “N.E.D. is cancer talk,” Marcy explained in her email invitation. “It’s what we all want to hear after a CT scan – that that we are No Evidence of Disease.” By definition, Stage IV cancer is considered incurable, so the women in Marcy’s cancer network strive instead to “dance with N.E.D”.

Made up of six full-time women’s cancer doctors from around the country, N.E.D.’s slogan is, “Breast cancer has a ribbon – but gynecological cancer has a rock band!” The theater buzzed with snappy women dressed for a party. The band started playing – original hard rock ballads belted out by the lone female doc, a hyper-athletic cross between Natalie Merchant and Janis Joplin – songs of love and heartbreak for the ovarian and uterine cancer patients whose disease inspires a rock band but very little funding for research.

They brandished their guitars and drums and microphones and filled our ears with the beat of the human drama – the full catastrophe as Zorba the Greek called it. Marcy and her three younger pals hit the dance floor and threw themselves into it, giddy, gossiping, mugging for photos. I couldn’t quite go there. My mind was busy worrying, calculating how I could get Marcy a doctor like one of those up there on the stage, a rock star doctor who would feel as passionately about saving her as I did. And my heart was stuck on the story she and a support-group friend had told us before the concert started. A year before when N.E.D. had come through town, the youngest member of their ovarian cancer group had shown up and danced her ass off. She’d been on her feet the whole show, having the time of her life. And then she’d gone home and died – that same night.

Anything can happen at any time. Watching all my risk factors – submitting to the twice-yearly exams and all the scans and probes, keeping my body strong, and eating as healthfully as I can – provides absolutely no guarantee that I won’t get cancer or any other illness. Maybe a serious illness isn’t even in my cards. I could get struck by a car and killed as I ride my bike to Marcy’s house.

I reside in what Shapin calls “the risk-factor world [which] holds out hope for avoiding cancer while recruiting masses of us into the anxious state of the ‘precancerous.’” The insurance companies know that’s my address, too. Because I’ve done all the diagnostic tests recommended to me, my only option for individual coverage, pre-Obamacare, was through the state high-risk pool.

My friend Marcy is dying. I’m dying too. We all are. She knows what’s going to be on her death certificate. I don’t. The lumps in my breasts, the moles, the fibroids, the solitary pulmonary nodule – they’re all benign, every one of them.  So far.

During the episode of mysterious high fever and miserable cramping and the escalation of doctors’ concerns, I wasn’t afraid that I was going to die. I’m too good of a rational risk-calculator for that.

My fears reside at a deeper level. Am I big enough, small enough, brave enough, smart enough to proceed with open heart and open eyes through a world that gives Marcy cancer and me just a small dose of necrotic tissue? What sense can I make of a world that gives and takes away so randomly, that offers such exquisite beauty and love and joy and deals out such indiscriminate suffering? Can I make peace with a world that offers certainty, ultimately, about only one thing: my death, and the death of everyone I love?

Questions, I know, no MD or MRI can resolve.