Welcome to Livingly Dying

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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

Holiday Love

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An earnest acupuncture practioner inquired as she prepared to treat me, “Are you feeling stressed with the holidays?” I laughed at the thought. “Not at all”, I said, “this feels like such a precious moment for my family – no one assumes we will get another chance. It’s all just lovely.”

For the past two years, my sweetie and I have traveled to Dubuque, Iowa for Christmas as my mother contends with decreased mobility. There was little point in getting a tree. This year I wanted a tree, lights, and all the small things that give the darkest days joy. My husband offered to cut down a hedge top always beyond my reach – it blocks views and juts up in isolation. He brought it in, surprising us with its actual size. It curls at the ceiling. It is homely and quite perfect, adorned with cheer.

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I used to dread the shortest days of the year but as a sick person I embrace them and feel loss as the days start lengthening. The short days suit my diminished capacities. They seem to bring the world more to my level. Life slows as days shorten and people cozy up – or, perhaps, they should.

The other day I got the lovely story below in my in-box. Prior to being diagnosed a baby had come into my life courtesy of a colleague and dear friend, Amy. Cora joined our workforce at the age of three months as her mom returned from maternity leave. We already had several office dogs (our days with ducks and hamsters behind us)

Duckling at Work

Duckling at Work

but babies can be needy so we had made certain commitments to swap time attending to Cora with after hour completion of tasks – our existing norm. I spent many a work hour with her in my arms.

Childcare at Meeting

Childcare at Meeting

In the chaotic April of 2010, multiple surgeries and wacky efforts to diagnose me left me increasingly scared. I borrowed Cora at every turn. She spent the afternoon with me as I counted down to my big, “yes, I have ovarian cancer” surgery. She would frequently visit me in bed as I recovered. Her mom emailed me this story and photo a few days ago.

May all of our holidays be meaningful and caring.  (And yes, I do owe us a medical update – suffice it to say that it has been an intense month of trying to build medical consensus on my next steps. Consensus may be here just as I disengage from all medical thoughts — cancer, what is that? — for the next week. So stay tuned. And enjoy a little holiday tale.)

Tonight is the first night of Hanukkah and Carol brought a menorah over to light with us. Cora has learned some of the story of Hanukkah this year and chimed in as Carol narrated what we were doing.

We don’t really know the blessing you say when you light the candles so after Carol said the prayer in Hebrew and translated some for us, I asked the kids to share something they were hopeful for.

Cora piped up, “I hope Marcy doesn’t die.” Then she explained to Carol about your bad cancer.

Leo then shared, “And I hope her other person doesn’t die.”

“Mike?” I asked. “Yep.” he said.

We all agreed.

So you our our Hanukkah hope this year.

Holding you both dearly in our hearts.

Much love,

Amy

Cora&Leo

From Gone to the Front Page to San Jose – in one dizzying week

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I was under 10 when Dionne Warwick belted out her hit song, “Do You Know the Way to San Jose“. Clueless to meaning, I could carry the tune. Almost 50 years later it might become my theme song of 2015. A clinical trial in San Jose seems to have accepted me. My first forays into California have left me wondering if I am not destined to rediscover myself as a California (middle-aged) babe.

Four months ago I sent an anonymous appeal via social media to locate nice people in Marin County, California willing to adopt me – sight unseen. I could have been a stalker with crazy intent. My appeal went (semi) viral (http://livinglydying.com/2014/08/29/adopt-me-please-chemo-fanny-pack-included/) and, I was overwhelmed with offers. My every other week treks to chemo in Marin have become a highlight in a rather small life and a source of well justified pride for the local community. The local paper agreed to do a story and it came out on the front page the Sunday of last week.

http://www.marinij.com/marinnews/ci_27036357/marin-residents-adopt-nurture-oregon-cancer-patient

Front Page

Front Page

(Saturday I had keened over my disappearance on LivinglyDying.)

What I didn’t imagine is the story would be my good bye to this stage of my cancer journey – every other week chemo in Marin County.

Monday night, November 24th, as I prepared for the start of chemo the next morning, my daily Google reader listed international media stories from the last 24 hours on ovarian cancer. A press release from San Jose caught my attention. http://sanfrancisco.cbslocal.com/2014/11/23/san-jose-hospital-pioneering-new-treatment-that-heats-kills-cancer-cells/   I recalled reading about this theory a few years back and hoping I could stay alive for its use. Little did I imagine that I might be among its first five patients!

Tuesday night my Marin host family and I spent and hour plus on the phone with the doctor leading up this new clinical trial. Wednesday, from my chemo chair, I started wading through the morass of details. Every day this week I have moved the ball forward at a dizzying speed – grasping the new trial risks and what it would require.

I would need to relocate to San Jose images-1so that I could have surgery every 28 days and report in for weekly mandatory tests and exams. Before I could even figure out my next steps a zealous friend had me adopted by the parents of a wonderful colleague. (They pick me up at the airport this Monday to whisk me to the hospital for intake exams.)

While pushing forward admittance to the trial bigger questions needed to be resolved. Would I lose my position in the U Penn Part Two? (No, it amazingly turns out.) Was I truly in a dire enough position for such dramatic intervention? (Cancer showed additional growth in Thursday test results.) Starting this trial seemed increasingly self-evident. But then, swoosh, I was looking at dropping chemo this week, the 9th and 10th ,  and doing initial surgery December 17th. It sounded exciting until I realized I would have hospital visits December 24th  and 31st. No, 2015 will be a challenging year to survive. I need to travel to Dubuque Iowa to see my mom not able to travel to me. I want a Christmas 2014!

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So, my surgical start will probably be January 5th – reporting in for final pre-tests December 31st (grumble, grumble). The details of the trial sound sobering. But they are less sobering to this person undergoing 31 hours of chemo every other week. The prospect of getting my brain back is exciting – its been fuzzed up by drugs. The prospect of rebuilding, or less undermining, my body is exciting. I take seriously the risks of being under general anesthesia for four hours every 28 days and having all my blood removed and heated for two hours to a temperature of 107.6 but these details cause me minimal pause.

My life as a lab rat,  images-4undertaking early risk for a bit more time, tells me this is not worth fretting. Forwards I go. Goodbye steroids! Let the bloodletting begin!

Thanksgiving 2014 – MIA

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With chemo the two days prior to Thanksgiving my odds at a festive holiday were weak and then the news came Tuesday morning that my toughest drug, oxaliplatnum, would be increased this round. I cancelled my plans. My ritual is to join a host of friends at an expansive farmhouse on the rim of a gorge allowing views to the desert east and the rains west. It’s a magical place holding decades of shared memories. I would miss 2014.

The funny thing about being missing is that you are in fact gone. The art of holding places seems minimally tested. As I slept all day Thursday and Friday I checked my email on the hour hoping for virtual connections. There were few. Clearly the party was taking full attention. Today I awoke to put on real clothes, my moans and belly holding the minimal clues to inner turmoil. But the steroids kicked in – that crazy zone where nothing at all leaves me spent with emotion.

Today my missing Thanksgiving hits me full force. I can feel the truth of being gone. The party continues. I am gone.

Little Leaps, Big Bounds

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Cancer moves exponentially, starting slow as invisible mutated cells find homes (unlike in functional bodies where they are peed out into oblivion) and then the mass or masses take off like that hopeful snow shape in a palm

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that suddenly emerges as an obvious ball worthy of throwing or further building towards a snowman’s torso.images-1images-3

My cancer went from delicate growth (September/October) to a small bound (today). The news comes on the heels of more daunting recoveries from my most recent treatments. My husband scurried from one futile effort to the next to bring me comfort this last cycle, his only reward my teary confession that I wasn’t sure I could continue this path. It felt too hard and, in fact, stupid.

Yesterday and today I feel good (yahoo!) but the news is the cancer is feeling good as well. It’s on the move.

Who to call? What to do? I rollback over my choices, as my personal doubts mount, and recall, “Oh yes, I had to play my big card back in June when the cancer surged so fast.” But I played that big card. The cancer continues to play its hand. My hand holds few backups outside of hoping that the waiting line for UPenn moves fast and that I qualify for a trial slot sooner rather than later (or never).

Uh Oh

Decent

Uh Oh!

Uh Oh!

Last week, I wept at the thought of enduring the back-to-back-to-back-to-back chemo days required by the UPenn protocol – HOW COULD I FACE THAT after these unrelenting five months of aggressive treatments. Today I want to book my flight to Phillly, elbow my sisters off the line and demand the start.

What odd creatures we humans are; or is it bigger than humans this quest to live?

I recall my last dog, Tony, in significant decline as he aged. Was he 16, 18? I didn’t know but he and I partnered in life for 15 adventurous, full years. Then he was deaf, dumb and blind, increasingly incontinent and having micro strokes. His rapid decline timed poorly with my terminal diagnosis. I wasn’t feeling well positioned to pull the plug. I decided as long as his tail wagged, his life was worth living. His tail wagged.

The vet gave me pills a year prior when she diagnosed the micro-strokes and a litany of other poor health omens. She inferred that these could be given for pain management (he wasn’t showing pain) or, hint-hint, to bring things to a close. Oh! My! In July of 2012 strokes left him barely able to walk beyond small circles. He stopped eating or drinking. I gave him every form of permission possible to die and started the pills. He lived. I increased the dosing and another day passed. This was like some very bad, slow moving skit. One night I gave him all the remaining pills, said my deepest levels of goodbyes only to awaken to a living dog and a husband declaring, “we are going to the vet now.”

The vet euthanized Tony – outside, on a vast lawn, on a glorious day. Tony, to the end, resisted. The vet said this was typical of dogs. Now I wonder about me.

Diem Brown was one more reality star I would never have encountered if she wasn’t plagued by recurrent ovarian cancer in the years prior to her death this past weekend at age 32. Two things struck me, again. One, how vibrant she looked mere weeks before dying despite surgeries beyond imagination. We want the dying to give us the courtesy of looking the part. It is the only way we, the outsiders, conceive of what is going to happen next. And then her last tweet, defiant, forward looking despite the cancer having engulfed her body as she swears,  “My doctors are seemingly giving up but I won’t & can’t rollover. Whatever option I have to LIVE I’m grabbing!”

I see this in my peers, regardless of age – at 82 and 32 – I see this commitment to life at all costs. And then there are the elegant exceptions. It’s a very big gray zone. Fighting vs. caving vs. bowing. Life is indeed a balancing act and the guidebooks rather vague.

“Enlightenment is always there. Small enlightenment will bring great enlightenment.” Thích Nht Hnh

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Current Update

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As these shorter, darker days hurtle us towards the close of 2014, it seems time to give an update. Just how am I staying alive these days? And what are my next tricks, if any?

Since late June of 2014 I have been doing several days of chemotherapy every other week. I am on a cocktail called the Bruckner Protocol that employs a varied mix of chemo drugs (often off label meaning FDA approved drugs but not approved for my form of cancer) in lower dose combinations that intend to intensify results without the toxicity. It has shown some success with hard to treat cancers. Using the protocol with recurrent ovarian cancers shows short-term results but there are challenges maintaining disease stability. It is no magic wand.

The doctors at the clinic are confidence inspiring in their relentless capacity to utilize the latest science to keep patients stable. Stability means a lot when you have untamed, terminal cancer. (Remission would mean more.) Drs Bruckner and Hirschfeld were pleased to hear that I not only had already started immunotherapy prior to arriving at their clinic but also that I was waitlisted for a next step immunological trial to open. I needed the Bruckner Protocol as a bridge to keep me alive. That was June 23rd.

I completed four treatments at the Bronx based clinic in NYC, a hefty commute, transitioning to Marin Specialty Care in early August. marinpagephoto2

I am just recovering from my seventh treatment in Marin bringing me to a total of eleven 31-hour cocktails.

Marin Specialty Caremarinphotonew3 became my new home when no Oregon facility was willing to treat me. (Thanks Oregon!) I had heard of Marin Specialty Care from the same woman who had initially presented the Bruckner Clinic as an option to track. Inbal was further down her relentless path with this disease when we met. With a young son to raise and a passion for life she was willing to try all options. Inbal blended zeal with research. She reported on the Bruckner Protocol with a journalist’s skill. For two years I saved her notes. When my cancer surge arrived in June I knew exactly where I was headed, and, in fact, flew off to the Bronx within a week.

Inbal lived in the woods near Oakland, CA. She chose Dr Jennifer Lucas as her oncologist, commuting the hour to Marin Specialty Care. Dr Lucas gave an initial no to Inbal when she requested the Bruckner Protocol but when asked to reconsider, Dr Lucas did, saying to me, “Who was I to say no. She and I both knew that I had no other way to keep her alive.” It is a rare oncologist that can set aside traditional doctrine and agree to a more daring protocol led by the patient. Dr Lucas watched the protocol both work and not work for Inbal. (Inbal died this September.) The clinic used the protocol on other hard to treat patients availing themselves of the free advise of Dr Hirschfeld in the Bronx. I arrived in August of 2014 as their first patient to fly in to their small 7-chair facility but patient number 9 on the Bruckner Protocol. Their entire team had expertise.

It has been an ambitious treatment period. Every two-week period I have three/four days in treatment/travel, recovery is a rather fierce three – five feeling lousy days (during which I moan and repeat, “oh my goodness” a lot) and then I have my rebuilding period in which I have daily health appointments and while my physical body is feeling better, my internal blood work is the weakest leaving me in a state of malaise. It is hard.  (14 days. 4 days treatment/travel, 5 days recovery, 5 days rebuilding.)

An additional challenge is maintaining a former life! My most vibrant health days are in Marin. There my body is in the best shape of the two-week cycle. Volunteers drive me to the airport, fly me by small plane to Marin, new volunteers scoop me up and bring me to my host family. I am fed and loved and dropped off by the 8 a.m. start of the chemotherapy drip. I am finally unplugged from my chemo pump 31 hours later to rush out the door to the driver who gets me to the Angel Flight, which brings me home. The love and dedication of these volunteers floors me. Their motivations fascinate me and, independently, they have become quite a social circle for my few good days each cycle. The fact that my new home is sunny and mild year round doesn’t hurt. My California days are nice.

My Oregon friends wonder though. I return sick and discharged and barely recover before departure. In Oregon, I am largely a missing person.

Where's Marcy?

Where’s Marcy?

All this effort initially showed great promise but back in September we got the first indication that the cancer is working around the therapy. Various tinkering is being tried, timed well as my body refuses to endure additional doses of some drugs. Oxaliplatin replaces Carboplatnum. Avistan is dosed when the stars or protein levels in the urine align. I get every infused anti-nausea med known and yet still, I endure the nausea, the nausea, and the endless nausea. Until one morning it is gone and much of my memory of the darker hours.

What is next? Just this week the University of Pennsylvania released the new T Cell Depletion Protocol that I have been on the waiting list for since June. The first woman will be accepted in January, with a new woman started each month with dose escalation every third patient. When will I be called? Will my weakened body still qualify? And can I keep my cancer calm until that moment?

I think I can. That’s what this whole six-month slog has been about. For now I count down to my next few spa dates in Marin, hoping my new friends are well and the sun will be out. That is far enough into the future for me.

Spreading the Word About Safety Nets

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Recently, a great blog run by a cancer pal called Help Keep A Sister Alive www.helpkeepasisteralive.com (what’s not to love about that name?) asked me to write a guest post on Medicare basics. Now they know I am no expert but they also know peer to peer sharing of the basics can be more powerful than confusing expertise. We all know someone younger dealing with a medical crisis. What they and you might not know is that Medicare and Disability/Social Security can help. Another truth is that Medicare and Social Security are increasingly presented as programs that could be cut – symbols of big government and we hate that. Right?

Medicare and Social Security may be two of the greatest programs of our government. They insure very basic safety nets, unless we think homelessness combines well with a cancer diagnosis or old age. People need to know about them. Read the below and share so that folks facing a crisis may find some financial help albeit fairly modest.

And consider what kind of shape our communities might be in if we tossed aside our current sick health care system chaos and instituted Medicare for All.

A Safety Net for Everyone

Medicare for Anyone with a Medical Catastrophe & Under Age 65

By Marcy Westerling   November — 2014

Medicare is more than the medical program offered to seniors over the age of 65. Medicare provides health care coverage to catastrophically ill people at any age. Those under 65 may enroll in Medicare if

  1. their disease is listed under the Compassionate Allowances
  2. they enroll in disability under Social Security Disability Insurance (SSDI) (should be easy for those who qualify for SSDI under the compassionate allowance aka automatic disability impairments)
  3. they can survive, literally and financially, for the two years of receiving SSDI before Medicare kicks in.

Accessing Medicare when you are under 65 can be confusing. First, few of us are aware of our eligibility and able to afford the waiting period. Second, the system is geared for elders. Other younger people on disability and Medicare can be your best guides.

In 2010 after I was diagnosed with stage 4 ovarian cancer, I slowly recognized that I needed Medicare so that I could leave my good but not good enough HMO. Medicare was my ticket to being able to access the best doctors for my disease wherever they are located and to compete for the best clinical trials.

A chance comment overheard shortly after my diagnosis suggested that I might be eligible for disability. I learned basics like disability is actually SSDI – social security disability insurance. Days later I called the local social security office and a friendly woman not only affirmed this new information but also quickly offered to complete all my paperwork, the short forms of the compassion clause, and to mail them to me. She then asked, “Honey, do you think you can get it from the mailbox, sign the three spots I flag and return it in the return envelope I provide?” This was a far cry from the harsh fight for disability claims I had heard from ill friends where they needed to “lawyer –up” and plan to fight for years. The compassion allowance is a zippy, user-friendly process but you need to be catastrophically ill.

Finding a local social security office to call and using the right language welcomed me into an easy process. Do not give up if your initial contact is a little less perfect. It took me awhile to understand the different rules – five months from start of disease before the first check will arrive, another two years before Medicare enrollment, who to contact when, but despite confusion, it has been relatively easy process. Two years and four months after being diagnosed, my invitation to Medicare arrived in the mail. (Actually, it got lost in the mail but that is another story.)

The most valuable card in my wallet!

The most valuable card in my wallet!

I knew from other patients that I needed not only to make decisions about enrollment in Medicare but also to select a supplemental policy (aka Medigap). Medicare Part B medical insurance typically only covers 80% of approved costs for cancer care. A supplemental policy is key because it covers the remainders of costs on whatever Medicare has paid for but not fully.

I have been on Medicare since October of 2012 and have had all my numerous medical bills from four different states paid in full. I have faced no restrictions under Medicare Part B and I have needed significant medical treatment. Unfortunately not all states require insurers to offer supplementary plans to those under 65 on Medicare. A list of the states that require the offering of Medigap policies can be found here. http://www.medicare.gov/supplement-other-insurance/when-can-i-buy-medigap/when-can-i-buy-medigap.html#collapse-2239 General information about Medicare and Medigap can be found here. http://www.medicare.gov/pubs/pdf/02110.pdf

The prescription drug plan, Medicare Part D, is a tougher story. Selecting a plan is typically based on the drugs you are currently on. For medically needy people it is much better to imagine the medications that you might go on and select a future oriented plan. For cancer patients in particular, we are in a tough position where infused drugs (covered under the very generous Medicare Part B) are increasingly being produced in pill form (covered under the very inadequate Medicare Part D). I am currently navigating these waters. It is clear that we would all benefit from pushing for categories of pills to fall under Medicare Part B through what are called Oral Parity laws.

Finding a Medicare insurance broker in your state to navigate the many choices is ideal. They should not need any payment from you and can plug you into the system to seek the best matches for your medical concerns. This New York Times article http://www.nytimes.com/2014/10/04/your-money/beware-of-shifting-options-within-medicare-plans.html?emc=edit_th_20141004&nl=todaysheadlines&nlid=55177073&_r=0 narrates the basics of Medicare today.

Medicare and Social Security are threatened with changes that may make them less available. If you like the programs, share why with your neighbors and family and the basics of what they do – this will allow others to realize they might be eligible and for our country to consider the merit of maintaining such a safety net for hard times. These programs have allowed me to stay alive.

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Making Real the Good, Bad and Ugly of Terminal Illness – Thank You Yes! Magazine

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Maybe it’s because my work as a community organizer is in my blood, I push to include people and issues that are less understood into routine conversation. Maybe it’s because, while I accept my stage 4b (there is no 4c) ovarian cancer diagnosis at age 50, I still don’t like how it has transformed my life. Or maybe it’s because I hear too often “You look too good to have cancer” from people who don’t understand how that innocent, off-hand comment can disappear my reality of living for five years with continuous chemotherapy treatment.  Whatever the reason, I want to create visibility for the ever-growing community of people living with terminal illness who are in treatment year after year. (Are we survivors? Barely. I am quite sure we are not “thrivers”. I settle on veterans as a better moniker then my personal favorite, losers.)

Illustration by Julie Notarianni

Illustration by Julie Notarianni

I asked a national magazine to cover the topic of people who have terminal disease but are still active in life. They did. Yes! is a quality magazine that takes tough issues and presents them in a solutions frame. We should all be subscribers. I encourage folks to “like” the internet version of the article to show public interest in mortality as a topic for conversation. And who better to lead the discussion than those of us forced into being experts.

In the time it took to move this article from concept to print, far too many of the women I quoted have died. A sadness. Being terminally ill is not a philosophical concept for us; it is an endless process of saying goodbye. It’s gritty and real and currently lonelier than it needs to be. Each of you that listens in or shares our stories are part of the solution.

If you are game – please click on the link and then click the “like” button. Thanks!

http://www.yesmagazine.org/issues/the-end-of-poverty/livingly-dying

warmly,
Marcy

What I Learned About Living From Dying of Cancer

Many more patients are now living for years with the diagnosis of terminal illness. The author describes her journey to what she calls “livingly dying”—facing her death by living in the moment with grace and mindfulness.

by Marcy Westerling

Dying inevitably follows living. What makes for a good death in a just and sustainable world? I think about this a lot these days. Four years ago, at age fifty, I was diagnosed with late-stage ovarian cancer. Active and fit, it took a collapsed lung and two broken ribs before I realized I had a big problem, the ultimate challenge of life: facing my own death.

In the first weeks after learning I was terminally ill, I wondered, “Will I face this in my heart or in my head? In my head, it is a storyline I can make interesting, wise, and abstract. In my heart, it is a constant tremor radiating from my stomach.” As the first months of terror subsided, I began to adapt to my “new normal.” My medical team advised, “You must start living as if the next three months are your last. When you are still alive at the close, make a new three-month plan.” I resolved to hope and dream and build in smaller allocations of time.

I made huge shifts in my life, severing two critical anchor points. I moved to the city from the small town that had been my home for 25 years—my isolated existence in the woods seemed too daunting for the emotional swings of terminal cancer. I retired from the organization I had founded and that had been my life’s work for 18 years. I knew the long hours and stress of the job I loved would deplete the strength I needed for cancer treatment.

I qualified for Social Security disability income thanks to the government’s “compassion clause,” and this got me Medicare two and a half years later. I stepped into my new life determined to live as long as possible. I decided I would live to be 72 years old, 19 years longer than the statistics predicted and an age I found acceptable to die.

It’s estimated that one in three people in the United States will receive a cancer diagnosis at some point in life. Some people die quickly. Others diagnosed as terminal continue to live fully even while facing a death sentence. A friend who had watched her mother die of cancer remarked on my vivacity. In the 15 years since her mother’s death, there have been advancements that make the devastating side effects of treatment more tolerable. Still, it has taken me years after my diagnosis to re-embrace the commitments that populate a full life.

I chafe at being invisible as a person with cancer. I am a lifelong feminist and community organizer. I believe in breaking silence and sharing truth. I pass as “normal”—healthy, white, slender, and heterosexual (having a husband helps). I have lived a life of privilege. For now, I don’t look or feel like I’m dying. I am just terminally ill.

Recently I was reminded of the great Rachel Carson. She hid the pain of her end-stage cancer to keep her Silent Spring message of environmental degradation alive in Congress and mainstream conversation back in 1964.

In 2014, I can choose to be visible. I have a tattoo on my wrist declaring me a “Cancer Warrior.” I sport buttons saying “Cancer Sucks.” I pedal everywhere, slowly, on a bike that announces “Cancer on Board.” I defy every attempt to limit me to my diagnosis as I dare the world to ignore it.

But sometimes I feel I am as isolated in shouting about my diagnosis as Rachel Carson was in secrecy. I look so good that observers may well conclude that the sign on my bike, the button on my bags, even the tattoo on my wrist represent strength and survival. Public or private, silent or loud, the outcomes are the same. Disease creates isolation and barriers from the world of the well. A friend with terminal cancer notes, “We cause discomfort to some because we are living, living in acute awareness of our impending death, living in pain but living as fully as we can while we are dying. Should we lock ourselves away in a figurative darkened room so as not to chance disturbing the hale and hearty with thoughts of death?”

People say odd things when they attempt to comfort the terminally ill while avoiding their own fears. “We are all terminally ill. You just know it.” I more than “know it” as my weary veins dodge yet another dose of chemotherapy, toxic poison that will bring me to my knees with exhaustion, nausea, and brain fog while hopefully keeping me alive a while longer.

While the statistics gave me little hope, real people with cancer provide inspiration. They look normal and live well. They laugh, watch TV, and travel. They haven’t stopped living, even as medical appointments, surgeries, treatments, and side effects disrupt their days.

I sought out other women living with a pink slip from life and discovered how hard it is for us to find each other. Medical privacy laws don’t help. Advocacy groups are often Web- or hospital-based, but not everyone flourishes in those settings. Eventually I created my own support circle of other women with terminal cancer. The group is called “It’s a Dying Shame,” and the outreach flyer states, “Our goal is to explore the rich and peculiar territory of facing our own deaths. Together we can mine the humor, strangeness, and beauty of a life turned upside down. Join us for tea down the rabbit hole.” Our group meetings provide a cherished time to speak our truth without taking on the emotions of friends and family.

People often say to the terminally ill, “You are so stoic, so graceful. I could never handle this so well.” Perhaps not. The truth is you have no idea how well or badly we, the dying, handle it. Kim, diagnosed as terminal three years ago at age 34, says, “Each day can vary greatly. Is it a doctor appointment day? Scan day? A day of total rest and relaxation? A day that the thought of me dying before age 40 leaves me immobilized, weeping in bed, and tightly grasping a heating pad? In a month’s time I go through all of these typical days. And then some.”

Social media also allows us to communicate with new ease about approaching death. Thousands follow Lisa Adams’ blog, where she describes every aspect of the medical and emotional realities of facing death as she copes with raising a young family. She doesn’t make it look easy or pretty. Lisa and other dying bloggers offer a view of pain that is normally rarely witnessed and ask that people with terminal cancer be seen as more than “courageous.” Guardian columnist Emma Keller and her husband chided Adams for over-sharing. I think that those who condemn our process are distancing themselves from Lisa—and me—and from the reality of protracted death.

The current rules of polite conversation make the journey toward death more challenging. One woman said to me, “It is like we are standing in a different room.” We are avoided or jollied up. (“You look so good you can’t be terminally ill” is the most hated and common of compliments.) These approaches insulate people in our culture from sitting with death, sadly but comfortably.

When people with terminal diagnoses communicate about their experience, it may make their walking toward death more doable. I cannot think of subjects better suited for full honesty than birth and death.

There is a trend to reframe some terminal cancers as a chronic disease, perhaps to avoid mention of death, to give hope, or because some terminal diseases are becoming more manageable over the years. One woman in her 40s rejected that label after six years in treatment: “For most people, it makes sense to make plans beyond one month at a time, but even that short a time-frame can turn out to be optimistic for me. Unexpected side effects catch up with me; treatments that we thought were working cease to work months earlier than expected, and suddenly we are thrust again into making life-and-death decisions, lacking any real information about what may—or may not —buy me even a few more months of life. Making plans in this context becomes almost a joke. Something about this state that I live in seems really different to me from what I think of as chronic illness. It is more like a slow dying process, during which I get to LIVE.”

I have noticed many of us with terminal cancer are of good cheer and even invigorated by having no presumption of longevity. We have little choice but to live in the moment; something many talk about, but few can manage. When you live treatment to treatment and test result to test result, there is less room for distraction by petty stresses. We can’t expect to live another year, but if we do survive one year, or five, or ten, we consider ourselves very lucky. My mandate is to live with the shadow of death seated comfortably on one shoulder—I rarely forget, but I often dismiss, my new companion.

I have made a certain peace with leaving this world, a peace experienced only after pondering what I might do, where I might be, what I might become after I die. I live in a culture that offers few views of what happens after death—it is either THE END (humus for the ages), or it is some mythic version of heaven and hell. Neither option works for me. I imagine my next world as Peter Pan did, “To die will be an awfully big adventure,” even if his image of death is more boisterous than mine.

Weeks after my diagnosis, before relocating to the city, I sat in the spring sunshine by a creek at our homestead while my sweetie did the chores I couldn’t do post-surgery. This was a favorite spot of mine. The chickens made comforting clucks in their enclosure to my right while the ducks quacked comically in the pasture to my left. The warmth of the sun reached every nook of my body. I was surrounded by so much that I loved—the tears I cried were happy ones. Couldn’t this be my heaven?

Today, I live in a lovely neighborhood, in a lovely house surrounded by pleasures that don’t take away the sorrow of departure. My life stays filled with joy and meaning as well as sadness and grief. I am livingly dying. Dying is woven into the reality of living. Neither is easy. But just as we live as a community, let’s face death as a community too.

Marcy Westerling wrote this article for The End of Poverty, the Fall 2014 issue of YES! Magazine. Marcy is a long-time community organizer with a passion for justice. She founded the Rural Organizing Project (ROP) in 1992. She is currently on her seventh approach to stabilize her cancer. She blogs at livinglydying.com

Ten Days of Okra

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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.

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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

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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

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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.

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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.

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Can You Hear a Snail?

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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!”

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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.

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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

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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)

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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

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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

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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.

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My Own Steamroller

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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!

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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

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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

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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

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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

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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

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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

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“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

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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

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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!

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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?

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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

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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