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

“Community is the Best Legacy”

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1.3.2On August 23rd, as wildfire smoke cast an apocalyptic haze over the state, more than 200 mourners gathered to celebrate Marcy Westerling’s life, grieve her death, and commit to living her legacy. For those unable to join us, we’ll share elements of that love-filled five-hour gathering here on her blog. In the presence of Marcy’s legendary bicycle and flowers picked from gardens across the state, we eulogized her, viewed slideshows of her life and her death, listened to her words, shared a meal together, and danced, danced, danced.

We talked much of the sisterhood Marcy formed around herself. Our closing speaker was the man we claim as our brother for life, her husband Mike Edera. Marcy was well pleased with the life she’d built. Her greatest regret at her early exit was that she wouldn’t be able to grow old with Mike. “We’re such a good team,” I can hear her saying to and about Mike. “Such a good team.”

~ posted by Holly Pruett

 

Community is the Best Legacy by Michael Edera

Once we figured out that Marcy did NOT have a bad case of bronchitis but, rather, a collapsed lung, we drove across town to have the fluid in her chest drained. As I drove, Marcy was texting and e-mailing away. I said “Honey, don’t you think we should find out what’s going on before we tell the world?”

“Are you kidding?” she said. “I never get sick. This is my big chance!”

By the time we were admitted for the procedure – called paracentesis – our dear friends Deb and Brandt were already in the room with us. From that point on, until the end, we were lifted by the hands of a loving community that never, ever let us fall. The love this community showed was manifested in just plain hard, difficult, and sometimes frightening work. I do not want to think about the hours that Holly put into managing the medical side of the house, the amount of times Pam re-arranged her life to fly out here, the hours Deb and Brandt spent by Marcy’s side, the steadfastness of her friends Kelley, and Cara, and Amy, Sarah and Grace, and Brigette, and Steph, and Susan and so many more.

Marcy understood something that I did not, at that time. As “Good People”, we all know that we have an obligation to help. But Marcy also knew that as humans, we have the right to ask for help. Think about that, it’s a big deal. It was a lesson she had learned at great cost.

On our first date, Marcy asked me who my political heroes were. I said some predictable bullshit like – Gandhi, Dr King… She told me her heroes were the women of Perugia, Italy. Then she told me the story. On one of the first days of her Junior year abroad in Italy, she was abducted and assaulted. She escaped her captors and fled down the street with them in pursuit. A group of young Arab men, street vendors (in Italy the undocumented can get no other work), put a cordon around her and protected her. When she went to the police to report the crime, the cops threw her in jail.

Somehow, word leaked out to the local feminist movement that a foreigner was in jail for trying to press rape charges. They canvassed all the jails in town, found Marcy, helped to get her released. Then they stayed with her, and supported her through the whole trial, which resulted in a conviction. It was an experience and a lesson that would inform the rest of her life.

That’s why, years later, as a thirty-something, single woman living out, as a lesbian, in small-town Oregon, when she ran into the Oregon Citizens Alliance gathering signatures for the vicious anti-gay ballot measure 9 at the town’s only grocery store, at the post office, where she could not ignore the thing, she reached out to Susan Pharr and Scott Nakagawa and Tarso Ramos and others for help. It was this small group of visionary people that went on the road to create the template for what became the Rural Organizing Project. She understood that people would respond if you asked for help, and you had the right to ask.

There was no difference between Marcy and Marcy-the-political-person. It was always a personal response to real life experience for her, never abstract theory.

In the last five years of her time, she brought all her skills to the fight against cancer. She asked for, and received help again and again. From oncologists, surgeons, complementary healers, researchers. There was nowhere she was afraid of going, nothing she would not consider. At the same time, she reached out and found people all over the country to support, to draw into community, to put their heads together to try and figure out the path through this wilderness that cancer patients enter.

She had ‘Cancer Warrior’ tattooed on her arm. I hate tattoos, but she didn’t consult me and I had to admit it was an apt one. She fought her battle the way Bruce Lee advised when he said:

“The great mistake is to anticipate the outcome of the engagement; you ought not to be thinking of whether it ends in victory or defeat. Let nature take its course, and you will strike at the right moment.”

She struck at the right moment again and again. She showed consummate skill. As was her way, she drew us all into the fight: The wonderful Deb and Brandt, the irreplaceable Holly, Amber, Cara and Amy, Chris, Leo and Cora, Jess, Sarah, Kelley, Brian and Quinn, Grace, Brigette, Finn, Jack, and Thalia and Mike, Mary Lee, Donna and Jan, Baker and Eve, Doodle and Susan, Julia and Thomas, Jamie Dawson, Chip and Nancy, David and Elaine, Joe and Lisa, Darrel and Diana, her friends from the Livingly Dying group including the wonderful Kim and Roz and Adele, the political associates and colleagues who constantly checked in on her well being, Ramon Ramirez, Scott Nakagawa, Susan Pharr, Tarso Ramos, Gary Delgado, Eric Ward, Jenny Levinson, Kathleen Saadat, Madeline Talbot, Barbary Dudley, Cathy Howell and so many others, the scores of friends she made on her blog, too numerous to mention individually by this frazzled guy, her hosts from around the country – Sharon in Philly, Sylvia and Bill in Marin Co, Kate and Michael in San Jose, and Thomas who helped us so much, the pilots of Angel Flight who flew her around like a rock star for free, her great, and noble sister Pam – who fought for her in a way that is impossible to describe and Pam’s daughter Kathryn, our brother in law Steve, our niece Nina who loved her so much, her brother Randy, her mother Mary who was there with her from the beginning to the end, her Dad Karel and Step Mom Doris who helped us so much, her cousin Colette, my family who made it possible for me to keep going – sister Terry, brother-in-law Gary, nephew Chris who spent long hours with us in San Jose, niece Claire who made herself available again and again, niece Mia who was always so loving to us, sister-in-law Peg with a lot of hard-learned, indispensable wisdom, my brother Fred, who passed on ahead of Marcy, Vida Lee, my son Jonah who shouldered my whole work load, and my oldest friend Katherine who kept the business from flying apart, and many, many people who I am forgetting to mention.

You can see that she raised an army for her last fight even if she was defeated by a much more powerful foe.

I don’t know what comes now. I look ahead and the future is dark, murky, smoky you might say. It’s not just my personal grief. We are entering into difficult times.

Whatever happens, let’s remember how large a community we have built, from family, friends, political comrades who are also friends, from care givers and plain old generous people who reached out when asked to help. Let’s remember that we have an obligation to help out, and we also have the right to ask for help. It’s around those two ideas that we hope to build Marcy’s living legacy.

We want the lessons of organizing community – which literally were the lessons of survival for Marcy – to have the widest possible reach. So that when people look for help in confronting unaccountable power, help is there, put together by a self-aware community, because community is the best legacy for the work we do.

Please RSVP for Marcy’s Memorial Celebration

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Marcy Westerling

Living Legacy Memorial Celebration
Sunday, August 23rd, 2015

3:00pm (arrival at 2:30)
Portland, Oregon

Dear friends, family, colleagues, and fellow organizers for social justice,

You are invited to the Marcy Westerling Living Legacy Memorial Celebration on Sunday, August 23rd at 3pm at 1st Unitarian Church, 1011 SW 12th Ave., Portland, OR (arrival at 2:30). Please RSVP here.

Marcy was many things to many people – a friend, a mentor, an inspiration, daughter, sister, aunt, partner and wife – but to all of us, she was an organizer.  She was always listening, thinking, feeling, writing, and plotting or scheming, as she would say, to bring people together to make their lives and our world better.  She continues to challenge us to use our personal and collective power to counter the wrongs in our lives and push with courage and determination towards justice for ourselves, our communities, and our world.

On August 23rd we will be remembering and celebrating the many ways that Marcy lit up our world and our lives and brought us together.  We will be grieving together and we will be honoring the legacy that Marcy has left us, and continues to challenge us to advance.  Hosted by the Rural Organizing Project, and lovingly planned by her family, friends, and colleagues, we will be following Marcy’s direction to grieve our loss and celebrate her life with sorrow and love.  All are welcome.

Please RSVP here and make sure to note if you will be joining us for the ceremony from 3:00 – 4:30 pm and/or the community meal and dance party 4:30-7:30, and the ages of your children if they will be attending.

If you have not already submitted a tribute with your own reflections on the way Marcy touched your life, please consider doing so.  These testimonies will be compiled and shared at the Marcy Westerling Living Legacy Memorial Celebration and beyond.  Please send us your stories, however simple or elaborate, about how Marcy has made a difference in your life and your organizing. No contribution is too small or big. Email cara@rop.org to share your tribute to Marcy Westerling.

We also invite everyone to honor Marcy Westerling and contribute today to sustaining her legacy through the Marcy Westerling Legacy Fund.

If you have further questions about the Marcy Westerling Living Legacy Memorial Celebration, please feel free to contact Cara Shufelt at cara@rop.org or Holly Pruett at hollyjpruett@gmail.com.  If you are interested in volunteering to support this event, please email Grace Taylor directly at grace@rop.org.

With love, grief, and gratitude,

Cara On behalf of Marcy’s friends, family and organizing community

Marcy Westerling Living Legacy Memorial Celebration

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Hold the Date:
Marcy Westerling Living Legacy Memorial Celebration
Sunday, August 23rd, 2015
Portland, Oregon

Dear Friends,

Marcy Westerling was a powerful force: a visionary organizer, movement leader, cancer warrior, friend, partner, mentor and an inspiration to many. From the living rooms of small town Oregon to the halls of the medical industrial complex, Marcy organized for her communities and was a true freedom fighter in every sense of the word.  The world is a more just and beautiful place because of Marcy.

The afternoon of Sunday, August 23rd Rural Organizing Project and Marcy’s friends and family invite you to join us for the Marcy Westerling Living Legacy Memorial Celebration.  We will come together, those who knew her well and those who may have only briefly been touched by her, to honor her memory, her life and her legacy.

Please mark the date in your calendar now. More details to follow soon.

With love and gratitude,
Cara & Holly on behalf of Marcy’s friends, family and organizing community

In Memory of Marcy Westerling

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The incomparable, unforgettable Marcy Westerling: March 25, 1959 – June 10, 2015

Marcy Westerling, a long-time community organizer with a passion for justice who founded the Rural Organizing Project, died late June 10th in her home in outer southeast Portland amidst the flowering gardens she loved so well, in the devoted care of her husband Mike Edera, family, close friends, and her loyal dog Sawyer. In the 5 years and 3 months since being derailed, as she put it, by Stage IV ovarian cancer, Marcy continued her lifelong role as a leader and organizer, informing and inspiring countless followers around the world through her reports from the frontlines of treatment on her blog, “Livingly Dying: Notes & Essays on Daily Life with Terminal Cancer”.

Marcy traced her identity as an organizer to her Dutch ancestry and the role her forebears played in the resistance movement during WWII. Her childhood on rural Long Island, NY shaped her love of being outdoors. Marcy graduated as an art history major with honors from Smith College in 1981 after attending the University of Florence during her junior year. She credited her time in Italy with teaching her about the power of women standing up for other women; she came back to the US and founded a campus rape crisis center.

Marcy’s first job out of college was with ACORN (Association of Communities Organized for Reform Now) in Minnesota and then Iowa. She learned more about the workings of power through three years serving the developmentally disabled confined to institutions.

In 1986 Marcy moved to Scappoose, Oregon, enchanted by the idea of life on a houseboat. She got involved in Central American solidarity work with the Ben Linder Brigade and then from 1988 to 1993 served as executive director of the Columbia County Women’s Resource Center, a grassroots feminist rural crisis intervention program. As president of the board of the Oregon Coalition Against Domestic & Sexual Violence during this time, she began to do statewide work responding to violence, bigotry, and injustice in rural communities.

Spurred by rural resistance to divisive homophobic ballot measures, Marcy founded the Rural Organizing Project (ROP) in 1992 to develop the ongoing capacity of pro-democracy groups in over 60 rural and small town communities in Oregon. This network of Human Dignity groups, committed to a broad agenda of social change including cutting-edge anti-racist solidarity work, was the first of its kind in the state of Oregon and has since become a national model featured in videos, magazines, web sites, blogs, books, journals, and national radio shows. Marcy provided hands-on training to organizers in Wyoming, Texas, Maine, New York, Colorado, Washington, Idaho, Nebraska, and Minnesota.

A number of prestigious awards and honors have recognized Marcy’s accomplishments and pioneering leadership. In 2009 she was granted an Open Society Fellowship to advance her model of organizing at a national level. In 2003 she was selected from 3,000 nominations for a two-year Ford Foundation Leadership for a Changing World Fellowship, accompanied by a $115,000 cash award. In 2001 she was one of eight national civil rights leaders selected for a two-week delegation to Israel.  A frequent featured speaker, Marcy gave the 2000 commencement address at the University of Oregon. Marcy was honored with awards from organizations including the Oregon Chapter of the National Association of Social Workers, Ecumenical Ministries of Oregon, Social Justice Fund NW, Lesbian Community Project, McKenzie River Gathering Foundation, Columbia County Women’s Resource Center, Coalition Against Hate Crimes, Oregon Gay and Lesbian Legal Alliance, and Right to Privacy PAC.

Marcy’s groundbreaking solidarity work with Oregon’s farmworkers union was documented in an ethnography titled “Building Alliances: Collaboration Between Causa and the Rural Organizing Project in Oregon.”  Marcy and PCUN President Ramon Ramirez spent a year as the “Marcy and Ramon roadshow,” traveling the country telling the story of their collaboration.

Marcy served in volunteer leadership roles for Political Research Associates, Oregon Coalition Against Hate Crimes, Western Prison Project, Columbia County Citizens for Human Dignity, Community Action Team, Columbia County Alcohol and Drug Planning Commission, McKenzie River Gathering Foundation, and the Rainbow Coalition.

Marcy’s hands were never idle. She biked to work with dog and computer in her basket, rain or shine. She quilted during meetings and gardened in between conference calls. She reused every piece of paper and stretched every dollar. She sent out hundreds of handmade Valentines every year and made her surroundings beautiful. After Marcy and Mike met through their shared political commitments, they moved to a half-acre pond surrounded by orchards, animal pens, and year-round beds of vegetables and flowers. They fed themselves from what they harvested, sold eggs, and imagined a small farm stand at the end of their driveway that would be the pension that neither of their cherished day jobs offered.

Marcy was a force to be reckoned with: fiercely smart, brave and bold, profanely funny, strong and determined. She brought these same qualities to her life as a cancer warrior – the moniker she had tattooed onto her wrist. “I dare the world to ignore my diagnosis just as I defy any attempt to limit me to my diagnosis,” she wrote. In nearly continuous treatment for five years, she tracked every possible option and enrolled in clinical trials and innovative approaches that took her from Philadelphia to the Bronx to Marin County and San Jose. She kept her doctors on their toes and organized other patients and an impressive support system everywhere she went. In Portland, she cycled to chemo and complementary care appointments with a large “Cancer Sucks” sign affixed to her bike.

Marcy shared her quest to “enjoy every moment of every day while having my pink slip from the world” through her blog, which was accessed by women from 45 countries, along with interviews, a support group she organized, and articles published in a range of venues including YES magazine.

After her diagnosis, Marcy and Mike moved from their house on the pond into town where they created an incredible urban oasis. If Marcy had any regrets from her purpose-filled life, it was that she didn’t have a chance to grow old with Mike, her partner in every sense of the word. She described her notion of heaven as one in which she would be by Mike’s side for eternity in the gardens of their homestead, in the sun, with water burbling nearby. In an essay written for the local Ovarian Cancer Alliance Marcy wrote, “While I stay saddened at how deeply interrupted my life was and how likely it is I will die younger than planned, I do marvel at how content Mike and I are with the life we rebuilt. We had a good life. We have a good life.”

Marcy is survived by her sweetie Mike; mother Mary Westerling, father Karel Westerling and his wife Doris; sister Pam Westerling, her husband Steve and their daughter Kathryn; brother Randy, his wife Peggy and their children Nina, Ricky, Peter, and Jonathan. Marcy was predeceased by her beloved younger brother Peter. Joining the family in mourning Marcy’s death are Mike’s family and Marcy’s tremendous circle of devoted longtime friends, organizing colleagues, and other cancer warriors, in Oregon and across the country.

Marcy chose a natural burial at River View Cemetery in Portland, and encouraged frequent visits to her grave. A public memorial will be held at a future date. University of Oregon is establishing a Marcy Westerling Collection on Rural Organizing. Memorial gifts are encouraged to a Legacy Fund established in Marcy’s honor by the Rural Organizing Project. Visit ROP.org for details.

 

Peaceful & a Little Grumpy

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June 4, 2015 

Alas, it looks like I continue to die… so that’s what I’m doing – patiently and kind of happily, dying.

Letting go.

I live each day, peacefully and admittedly a little grumpy as I prepare to leave, alongside Mike, beloved Caregiver of the Year.

I am amazingly tired. Bye for now.

Posted by Marcy’s care team: Marcy continues to be so appreciative of all of your love and concern. She knows it’s been hard not to hear from her so she’s asked us to post this message from her on her behalf. Your support means the world. With thanks and love.

Transition to Hospice Update #1

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Hospice is “designed to give supportive care to people in the final phase of a terminal illness and focus on comfort and quality of life, rather than cure.” Actual rules require that several doctors agree that the patient is in the final six months of life before they can enter hospice care. That is a very subjective agreement for doctors to reach although not in my case.

Six months is a long (and potentially) wonderful time.

This first week of transition has felt quite zoo-like or a bad, too long Saturday Night Live skit – not the oasis of calm I was seeking.

My house as a zoo.

My house as a zoo.

Why? I came home with an NG Tube connecting my stomach with external equipment that pumps anything that enters my stomach out. I can stop the pump to allow pills to enter the blood stream but the basic idea is that I need an exit plan for my stomach and my cancer has blocked that off. This requires that I am tethered much of the time to equipment. And the consequences of things not working are

  1. gross (stomach fluids on my lap) and b. it can make me feel yucky fast.

    It looks so innocent

    It looks so innocent

Of course, things went awry from day one and diagnosing the actual problem required an array of people, being paid by an array of sources – e.g. problem solving within health care bureaucracy. Yes, a very bad week. Since I couldn’t diagnose the problem, I defaulted to blaming everyone. In (almost) retrospect there are probably more praises to be sung.

Hospice problem solves. They may need pushing, they may need patient clarity, they may need time but they seem to persevere. Yesterday, they finally got OSHU, the discharging hospital, to release the equipment that only they could provide. Yesterday they brought in a man with 40 years experience with NG tubes to visit, explain the situation then get to work.

I am now informed, calm, and have a really new frame for understanding the revised role of the NG tube now that I am in hospice. And it includes eating and minimal reliance on the pump, a step towards normality. And my oasis of calm…?  search

Warmly, marcy

And a Time for Goodbye

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My ten day allocations of living shrunk last week when my team of doctors decided that I was no longer eligible for chemotherapy. Chemotherapy being my only active tool to contain my cancer which seems to be invading more and more of my body. I entered in-home hospice Friday.

I have yet to sing the praises of hospice. The main difference is that I am at home (nice) and that Mike is now a deputized nurse (not so nice.)

I don’t feel good. It hurts to talk (ng tube goes down my throat to extract fluids from my stomach into a cute little bucket.) I have received no actual nutrition since i entered the hospital. Nothing can stay in my stomach with out me throwing up. And nothing can go beyond my stomach. There is no detente in site.

I wont pretend to keep blogging much. I think the above sums up my trajectory. I will soon die. I am not scared but I am truly sad.

Thank you for finding this blog, passing it on. Perhaps it will have a future in another’s hands.

I am not encouraging visitors. I find this a time for quiet reflection.

Much love to all and most especially my care team that formed the night of my diagnosis and has stood by me through it all. And my beloved partner, always – Mike Edera.

Goodbye, marcy

Dreaming in Ten Day Allocations

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A Brief Update from Marcy

Phew…..my 2015 roller coaster ride continues. In early April intensifying pain turned into non-stop vomiting indicating a bowel obstruction. I was admitted to OHSU, a teaching hospital where courageous bedside manner was being tested as I was informed on the severity of my status. One option presented, being “sent home to starve”, sent my support circle and I into an advanced stage of grief. The hospital advised waiting to see if my body could self-heal through fasting and no liquids to aid bowel recovery.  (Please Note: I have since come to understand that being “sent home to starve” is harsh language for a common way to die. As the organs begin to shut down due to cancer, the body no longer wants or needs food and then water leading, in fact, to what can be a very peaceful death.)

You Need Your Bowel - outer pink.

You Need Your Bowel – outer pink.

As my blog reported on April 7th (With Love and Luck) I did recover from this bowel obstruction but I remain at higher risk for more. As has been true for all of 2015, I continue a downward slide. It hurts to walk, so I don’t walk. I feel my cancer despite my opiate patch.

When first diagnosed I was informed that I needed to learn to live in three month increments. I did. I feel like my new mandate is to live with ten-day increments (the time it would take for a bowel obstruction not to self-resolve) and this feels hard. I need to think about every thing that I put in my mouth. Is it low fiber? My farmer husband is aghast that all that he grows and prepares for me as organic and full grain is now condemned.

White bread only!

White bread only!

I continue to find some amusement in the ironies of life.

Palliative care is now an active team member. They are great. They also advise me against hospice since in hospice I can have no chemo treatment and I would die fast. I am still opting for life.

I had a few days in the hospital where I had NO PAIN. I felt stable for the first time in 2015. I work towards that stability and then rebuilding all the strength I have lost.

This optimism is eased by my latest ca 125 showing a startling drop from 173 to 117. For days I refused to open any other messages from OHSU fearing they would retract the numbers.

Who knows….?  My body, my cancer and modern science rules.

Given my current weak status and high need for sleep, I am NOT keeping up with email. If you email me, hold your queries (please!) and instead just give me YOUR update. My blog will do its best to keep you posted.

If you live in the Portland metro area and want to help with daytime transportation or food support, let me know – again most of these helpers will get low contact with me – just talking tires me more than I can afford right now. I am officially dull but eager for your monologues.

Much love, marcy

Love and Luck

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Pain was my companion for all of January, February and March of 2015. Extreme, escalating and new types of pain brought me to the ER early April 2nd. Today, April 7th, I was cleared to order real food! If I can keep it down, I can go home later today or tomorrow. A Fentanol patch now experiments with keeping me pain free for the rest of 2015.

The week was full of gloom and doom – dire language from docs predicted a direct pathway to death. My friends and I cried a lot as we planned my burial, memorial and more.

Yesterday four liters of fluid were removed from my belly. No doctor expected that I really had ascites. I pushed for an ultrasound. With ten pounds of ascites removed, my intestines could move to their real homes. My bowels can breathe and re-inflate to do their job. I might just be back in the business of living.

Is this event a big marker on my path? Yes. But really, as always, it means I need to find a chemo that can work. I can’t stay alive with the volume of cancer I have.

So with love and luck, and hundreds of candles lit, maybe we can cheer the chemo on. Thursday I am happily re-ensconced in my chemo throne. Hoping yet realistic.

Thank you all! Love, marcy

Falling Off the Tightrope

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I share a post below that my friend Holly did to a circle of close friends. I went to the Emeregency Room Thursday, April 2nd, early in the morning after my sister, a doctor in the Midwest made urgent calls to friends and me saying, “Go to the ER now.” Everyone scrambled to get dressed and I was out the door in five minutes, overnight bag in hand. All my complaints and moaning of the last few weeks neatly adding up to a bowel obstruction. As cancer expands it damages organs in its path.

I had enormous pain because what came into my system, food and liquids, could no longer exit. Below is the update as of two days ago. I have now been in the hospital four days with no food and just sips of water as we wait to see if my body can self heal. My first try at food may be Wednesday. Chemo is set for Thursday.  Warmly, marcy

Hi everyone,

I know you’re anxious to hear how Marcy’s doing – thanks for your patience.

Marcy is still at OHSU Hospital. She is stable and relatively comfortable, alert and very on top of her situation. That said, this is clearly the diciest her situation has been. A sudden downturn is possible at any time.

Marcy asks that you light a candle for her and focus your thoughts and well wishes and prayers on her.

Her doctors here at OHSU (and those consulting from the San Jose team) agree that continuing to wait and watch is the right course for her bowel obstruction. She will be in the hospital through the weekend and possibly for a full week as her bowels rest and – we hope – recover. If there are no further complications they agree that continuing her current chemo makes sense… her present situation is not a failure of the chemo, which after only one round hasn’t had a chance to prove itself.

Again, the hard truth is that the current chemo may not be beneficial even after additional rounds, or that other complications could arise.

All the more reason for us to continue to add our own positive energy in support of Marcy’s phenomenal life force and will to live.

Feel free to send Marcy photos of those candles. Email (Marcy@rop.org) remains the best way to let her know she’s in your thoughts (and keep her amused with snippets from your life).

With thanks for your love and prayers,

Holly

Holly Pruett
hollyjpruett@gmail.com
http://www.hollypruettcelebrant.com
503.348.0967

Brava!

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She may make everything look easy and glamorous but she is doing it publicly, with intention and saving far more lives than we will ever be able to count. Brava!  xo marcy

This was originally posted March 24, 2015 in the New York Times:http://www.nytimes.com/2015/03/24/opinion/angelina-jolie-pitt-diary-of-a-surgery.html

Diary of a Surgery by Angelina Jolie Pitt

LOS ANGELES — TWO years ago I wrote about my choice to have a preventive double mastectomy. A simple blood test had revealed that I carried a mutation in the BRCA1 gene. It gave me an estimated 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer. I lost my mother, grandmother and aunt to cancer.

I wanted other women at risk to know about the options. I promised to follow up with any information that could be useful, including about my next preventive surgery, the removal of my ovaries and fallopian tubes.

I had been planning this for some time. It is a less complex surgery than the mastectomy, but its effects are more severe. It puts a woman into forced menopause. So I was readying myself physically and emotionally, discussing options with doctors, researching alternative medicine, and mapping my hormones for estrogen or progesterone replacement. But I felt I still had months to make the date.

Then two weeks ago I got a call from my doctor with blood-test results. “Your CA-125 is normal,” he said. I breathed a sigh of relief. That test measures the amount of the protein CA-125 in the blood, and is used to monitor ovarian cancer. I have it every year because of my family history.

But that wasn’t all. He went on. “There are a number of inflammatory markers that are elevated, and taken together they could be a sign of early cancer.” I took a pause. “CA-125 has a 50 to 75 percent chance of missing ovarian cancer at early stages,” he said. He wanted me to see the surgeon immediately to check my ovaries.

I went through what I imagine thousands of other women have felt. I told myself to stay calm, to be strong, and that I had no reason to think I wouldn’t live to see my children grow up and to meet my grandchildren.

I called my husband in France, who was on a plane within hours. The beautiful thing about such moments in life is that there is so much clarity. You know what you live for and what matters. It is polarizing, and it is peaceful.

That same day I went to see the surgeon, who had treated my mother. I last saw her the day my mother passed away, and she teared up when she saw me: “You look just like her.” I broke down. But we smiled at each other and agreed we were there to deal with any problem, so “let’s get on with it.”

Nothing in the examination or ultrasound was concerning. I was relieved that if it was cancer, it was most likely in the early stages. If it was somewhere else in my body, I would know in five days. I passed those five days in a haze, attending my children’s soccer game, and working to stay calm and focused.

The day of the results came. The PET/CT scan looked clear, and the tumor test was negative. I was full of happiness, although the radioactive tracer meant I couldn’t hug my children. There was still a chance of early stage cancer, but that was minor compared with a full-blown tumor. To my relief, I still had the option of removing my ovaries and fallopian tubes and I chose to do it.

I did not do this solely because I carry the BRCA1 gene mutation, and I want other women to hear this. A positive BRCA test does not mean a leap to surgery. I have spoken to many doctors, surgeons and naturopaths. There are other options. Some women take birth control pills or rely on alternative medicines combined with frequent checks. There is more than one way to deal with any health issue. The most important thing is to learn about the options and choose what is right for you personally.

In my case, the Eastern and Western doctors I met agreed that surgery to remove my tubes and ovaries was the best option, because on top of the BRCA gene, three women in my family have died from cancer. My doctors indicated I should have preventive surgery about a decade before the earliest onset of cancer in my female relatives. My mother’s ovarian cancer was diagnosed when she was 49. I’m 39.

Last week, I had the procedure: a laparoscopic bilateral salpingo-oophorectomy. There was a small benign tumor on one ovary, but no signs of cancer in any of the tissues.

I have a little clear patch that contains bio-identical estrogen. A progesterone IUD was inserted in my uterus. It will help me maintain a hormonal balance, but more important it will help prevent uterine cancer. I chose to keep my uterus because cancer in that location is not part of my family history.

It is not possible to remove all risk, and the fact is I remain prone to cancer. I will look for natural ways to strengthen my immune system. I feel feminine, and grounded in the choices I am making for myself and my family. I know my children will never have to say, “Mom died of ovarian cancer.”

Regardless of the hormone replacements I’m taking, I am now in menopause. I will not be able to have any more children, and I expect some physical changes. But I feel at ease with whatever will come, not because I am strong but because this is a part of life. It is nothing to be feared.

I feel deeply for women for whom this moment comes very early in life, before they have had their children. Their situation is far harder than mine. I inquired and found out that there are options for women to remove their fallopian tubes but keep their ovaries, and so retain the ability to bear children and not go into menopause. I hope they can be aware of that.

It is not easy to make these decisions. But it is possible to take control and tackle head-on any health issue. You can seek advice, learn about the options and make choices that are right for you. Knowledge is power.

This was originally posted March 24, 2015 in the New York Times:http://www.nytimes.com/2015/03/24/opinion/angelina-jolie-pitt-diary-of-a-surgery.html

Finding Peace on the Tightrope

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It’s been a quiet week on Harold Street. I re-started standard of care chemo last Wednesday and after my steroidal protections wore off, I retreated to bed. I felt lousy and exhausted. Sitting up for ten minutes seemed an accomplishment. My extreme response surprises me since the treatment, Gemzar and Avistan, is pretty light in the world of chemo options.

Am I so weak as I continue to stabilize from my January/February deterioration that I can no longer tolerate chemo? Or after five years of heavy treatment is my body just declaring its limits? I have chemo again this Wednesday, my birthday.

I feel unsteadily perched on a tight rope – on one side is the land of advanced terminal cancer, where I have learned to live well, on the other side is end stage cancer, which I have tried so hard to avoid.  images

But aren’t we all on some type on tightrope? And how much control do we truly have?

With love, marcy  images

“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” – Susan Sontag

And Then a Texan Called

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I haven’t spoken much about my HEATT team except to say they are fantastic. They are varied individuals, compatible and unified in their avid curiosity and commitment to how heat treatments can stall disease. The “father” of the trajectory I am on, HEATT, is Roger, a Texan complete with cowboy hat, home on a ranch, and Marlboro man face. He has been working on heat therapies for decades and flies into San Jose for every surgery and, like all the team members, is very available. (They give out their personal cell numbers, answer the phone and seem happy you called!)

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Roger checks in on me regularly. When he read my latest blog post he called from the airport to say, “Whoa, your situation is not that dire from our perspective.” He went on to explain stuff that I cannot easily re-explain but the swelling of my cancer may be its response as it prepares to die. HEATT is working to make changes at the molecular level and that takes time.

I feel a glimmer of hope

I start chemotherapy next Wednesday and I am quite ready – gemzar and avistan, both drugs I have had before. I wish I could start today and have some immediate pain reduction. My kick off palliative care appointment isn’t until the end of the month. But I cherish a small permission to wonder if maybe my toes will step into 2017 and beyond.

If nothing else, I do provide a good story of suspense.

Love, Marcy

P.S. Keep those helpful ideas coming!

 

Future Options – Ideas Most Welcome

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Stabilize then Rebuild. That has been my mantra since returning from the devastating medical experiences of January/February 2015. Stabilizing meant recovering my abilities to walk steadily, speak clearly, regain strength. All of this was happening with great speed. As was a less heartening challenge in eating, growing pain throughout my belly and each day more hours spent in the bathroom in great discomfort.

The removal of ascites (cancerous fluid) helped last week but not as much as expected. And the fluid started returning immediately. I never was so eager for my doctor’s visit as on Wednesday of this week. She palpitated my belly, looked grim and coordinated for me to go right to a ct scan. It seems my cancer has been partying hard in my belly – expanding in devious ways all of which are still not entirely clear to me but in cancer world – volume matters. It is clear that this is the most cancer I have ever hosted.

And I have no tricks up my sleeve – I have used them all. (There are others out there. They are just not up my sleeve.)

The questions of the week now are: Can I stabilize? Can I rebuild? Exactly what phase have I moved into as my fridge starts filling up with ensure – a protein drink for those too fragile to get what they need through meals?

I had decided this blog post should be light. I have posted a few too many heavy ones of late. But what with reality, what can I do? But here is something that cracked me up yesterday. A fairly credentialed writer and blogger wrote a piece called, What if people treated other cancers like they do breast cancer? I looked forward to a good read on funding unfairness. But instead it was a rant (honest and accurate) on the silly ways breast cancer gets attentions but still totally tone deaf to the invisibility of the other 1999 forms of cancer.

It’s a crazy world — let’s find joy where we can.

I do not know what is next but I hope a plan will allow me to enjoy as much of 2015 as possible. (I’d love to step a toe into 2016….)

Lots of love and appreciation, marcy

 

A Time to Nap

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The same day my formal notification came to say that my drivers license is about to expire, I understood that I would not be legally allowed to drive for at least a year. Ho hum. I am slow to comprehend my new limitations. Much of the three weeks in San Jose remain lost to me – I was unconscious. My husband repeats what happened and it seems like a fresh story each time. The after effects of the brain seizures leave me confused so I need to go back to, “and why do I need to do this?”

I use a cane when I walk outside. I don’t walk my dog. I do physical therapy every day. I sleep 12-18 hours a day. I always want to lie down. I am confused often (“Can you repeat that please.”) I must take a drug for the rest of my life that triggers such exhaustion. I am a brain seizure patient.

Yesterday a hospital visit led to a paracentesis where 3+ cancerous liters were drained from my belly losing 8 pounds and offering much immediate relief by removing from my list of woes an inability to eat or drink, significant constant GI distress and lower back pain.

I await my actual treatment plan for my cancer. I am too tired for emotions. And now I shall take a little nap.

Thank you for my friend Holly masterminding the maneuvers and my husband for coping with way too much while I sleep. Sleeping = Recovery.

Survive February (barely). Review Legacy in March.

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As news first circulated that I was terminally ill, many colleagues surfaced who wanted to insure that my work was documented and to offer their skills to the process. Little did they know, I am a hoarder. Few papers were ever discarded by me and many were carefully filed. And then another colleague decided to get a degree in documentation, Sarah Loose, and when she returned from Columbia University she set to work.I am still alive and this project is ready to go public.Most of you live far, far away but if you are near and curious feel welcome to join us this Sunday in Portland, Oregon.

Rural Organizing Voices House Party — Sunday, March 1st

2:00 – 4:00pm

Peace House (2116 Northeast 18th Avenue – Portland, OR 97212

Please RSVP: sarah@rop.org503-367-0157

Over 20 years ago, Marcy Westerling’s passion for organizing sparked a statewide movement for human dignity. Today, that movement continues to break new ground, building county-by-county organizing infrastructure that evolves to reflect the ever-changing face of rural Oregon. Because of Marcy’s work within Oregon and beyond, the Rural Organizing Project’s model has become an inspiration to organizers and communities around the country.

Join us on Sunday March 1st to celebrate and support the launch of Rural Organizing Voices! A project dedicated to expanding knowledge and strategies that advance rural organizing.

Rural Organizing Voices makes Marcy’s organizing wisdom and the stories and lessons learned throughout ROP’s 23-year history publicly available. Funds raised will support the completion of the Rural Organizing Voices Oral History Project and the establishment of a permanent “Marcy Westerling Collection on Rural Organizing” at the University of Oregon, featuring Marcy’s personal papers, case studies on the ROP model and a county-by-county archive. This cache of materials shares lessons from over two decades of organizing in rural Oregon and will be a touchstone for future rural organizers and leaders for decades to come.

We hope you can join us on March 1st! Drinks and light appetizers will be provided. Bring your checkbook!

Host Committee: Barbara Dudley, Cathy Howell, Sarah Loose, Suzanne Pharr, Sandy Polishuk, Ramon Ramirez, Dianne Riley, Deb Ross, Kathleen Saadat, Cara Shufelt, Dave Toler, Kelley Weigel, Elli Work, Thalia Zepatos

The Peace House is ADA accessible; however, if you will be coming in a wheelchair it would be helpful if you could let us know in advance (sarah@rop.org or 503-367-0157).

Not able to attend the House Party but still want to support ROP and these legacy projects? Donations can be made on the ROP website at: http://www.rop.org/rural-organizing-voices-donations/ or by sending a check to: ROP, POB 1350 Scappoose, OR 97056. Include “Rural Organizing Voices” in the memo line.

Marcy, the lab rat, checks in.

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Marcy, the lab rat, checks in.

This is a brief check in as my vision still slows my typing but my vision gets better by the day as does the rest of me but not with out a lot of help!

Here is what happened these last few weeks as my sister, husband and medical team repetitively help me piece together. We arrived in San Jose January 25 for a barrage of tests the next day. We also got to meet with many of the team members – all excellent. Wednesday the 28th early, early we arrived at the Operating Room. The five-hour surgery went well from what I understand. Afterwards, as mandated, I was wheeled to the ICU. It was supposed to be a maximum 24-hour stay or until I woke up. But I didn’t wake up until late day five, despite all their tricks.

Five days of this!

Five days of this!

I left ICU for the hospital then rehab.

In rehab I was helped to reboot. To return to the Marcy I was before surgery and five plus days of NO movement. In rehab, I also had a most unscheduled brain seizure – panic, 911 called, EMTS arrived and promptly treated me and relocated me to the emergency room where my clothes were sheared off, more stabilization, then a return to ICU. I had one more seizure during this stabilization phase.

Apparently, I am the first patient in which treatment seemed to trigger PRES (Posterior Reversible Encephalopathy Syndrome) and Eclampsia:-Review. Of course I am patient #5 receiving treatment # 11.

My current status is that I stay appreciative of being home, the tremendous host support we received in San Jose, at the 24-hour care from my husband and friends, two trips from my sister in the midwest in two weeks

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withPam

and horrified at my current physical status (sleep 18 hours/day due to anti-seizure meds.) I have jettisoned my walker for my cane but I do everything S L O W L Y.

What is next? Good question. I do not know, a reality I hate. I do know that today I start physical therapy. I should be back in San Jose today getting tests to prep me for a second surgery this Wednesday, treatment two. I withdrew from the trial, though, when it was obvious I would be disqualified for treatment two. This allows me the opportunity to re-apply. (And get accepted!)

My big conclusion from the last month? Dying is easy. This living and recovering is very, very hard. Thank you for all the support in the latter!

love,

Marcy, the lab rat

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Modeling Options

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I ran across this quote and was quite taken with it. It describes what I know.

“Many of my friends will see their future in the way I handle mine.” (Said Barbara Rosenblum who died 2/14/1988 three years after her diagnosis with advanced cancer.) “For some reason I am one of the first to face death in my circle of friends. My living with death is a big moment for my community. It is significant.” Cancer in Two Voices

I blog to break my isolation but I also blog because I am living future realities. Maybe living my experience out loud will ease the journey of others.

warmly, marcy

No Marked Exits

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There is a vague line between refusing to greet death and strategically delaying death. In this short essay that arrived in my inbox today, an oncologist calls out useless delaying tactics for stage iv patients. She summarizes, “Multiple lines of therapy in stage IV solid tumors have diminishing benefit, and this is where patients and families need to know that the finish line is the same. You can take the expensive, toxic obstacle course or you can take the easier, cheaper, nontoxic route with excellent hospice care.”

She is talking about me.

I accept my death even as I have not stopped trying to delay it.

Which is the hospice exit?

Recurrent ovarian cancer, clearly terminal, has dozens of treatment options. But, as quoted above, they tend towards diminishing returns.

In my little mind, I decide that by bartering my body to move intriguing science forward I am not just a societal burden. I am paying my way. Kindof.

Today is the birthday of the great, late Martin Luther King, jr. I am used to paying my way in more overt ways that rally others and myself to live inclusively and fairly – to exemplify MLK’s description of beloved community where no one is left untended or in need by policy or neglect.

Today, instead, I hobble with the dog around the block. I hurt. I have hurt for weeks now. I replaced the illness of chemotherapy toxicity with the pain of presumed cancer growth rearranging my torso. There is no escape as each step hurts. Seated I hurt. I am not the builder of MLK’s dream; at best I am the recipient.

I am eager for the HEATT trial to start. I count down in hours knowing that each day off treatment is a burden just as each day on treatment ended up a burden. Weeks like these make me throb with the stupidity of trying to outlive my disease.

The exits are not well marked with terminal illness.

There are dozens of things left for me to try. But when is trying itself wrong.

Getting Cooked in 2015

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Medical plans for 2015 are in place.

The last week of January I will become the only person you know (admit it) that is getting cooked in an effort to stunt her disease. I will get cooked six times as part of this Phase One clinical trial – every 28 days. The cooking, technically known as heating, happens in an operating room with me under general anesthesia for the four plus hours. During the procedure my blood is continuously removed and returned (much like dialysis) as it is heated to the magical 107.6 degrees Fahrenheit temperature. The first hour gets the blood to the required temperature, the last hour cools the blood back down to normal. In the main part of the procedure the blood functions like a radiator to heat my entire body to the 107.6.

107.6 F

107.6 F

There is nothing very new about the idea of heating the cancer to kill it off. It’s been an international effort with Germany and Japan also spending significant time on the concept. The challenge has stayed getting the body hot enough to destroy cancer with out destroying major organs – a tough balance. Clearly, a human cannot survive a two-four hour fever of 107.6.

So how do I intend to survive? Well, my team of doctors believes, and has convinced the FDA, that they have evolved the equipment needed to protect my organs while heating me up. While I will be within the first handful of patients using this equipment, there is a longer history to calm me.

A doctor in Galveston, Texas, Dr Roger Vertrees, designed the initial two generations of  equipment first using it on 40 AIDS patients in the nineties and then 10 very advanced lung cancer patients in 2004. Both were well-documented, credible trials. Dr Lilja, my new doctor in San Jose tracked this work, travelled down to watch and when the Galveston Hurricane images

wiped out their lab suggested they relocate to San Jose where the third and current generation of the equipment is setting sail. Now Dr. Vertrees travels to San Jose for every surgery and is the “founding father” of the working team in 2015.

I enjoyed meeting the San Jose HEATT team. They are run out of a small, no frills private practice under the lead of Dr Lilja, a long time (but still quite young) gyn/oncologist. The hospital they work with, Good Sam, is nearby and also pretty plain and well regarded. Dr Lilja seems to be a bit of a visionary much like Drs Bruckner and Hirshfeld – willing to live a more simple life in the pursuit of cancer breakthroughs.

Dr. Lilja has long explored heated chemo (known as HIPEC) for his patients. HIPEC is hard to tolerate, not relevant for heavily metastatic people like me and serves as no magic wand motivating his look beyond towards HEATT.

I like the dedication, teamwork and vision, which is good because I am putting my life and hopes for a future in their hands.

Expect updates from Marcy the lab rat.images-4

Happy New Year 2015!

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If you are reading this, you are alive and that is pretty darn good.  dec-31-calendar

In a world that barely promises and rarely delivers fairness, my hope is that we each do our individual and collective best to even out the world’s woes.

Let’s reflect on the last year and look forward to a new year by listing concrete ways we have made the world a better place.

Because, really, what is the meaning of being alive?

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warmly, marcy

A Summary Shout Out to Bruckner Oncology

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Please Note: I still owe you an update of my next medical steps – coming soon! Until then let me close out this phase with the great Team Bruckner.

Back in June 2014 I posted about Joining Team Bruckner. I have made subsequent posts about the experience on the Livingly Dying blog. I completed a total of 13 treatments, each two weeks apart and all requiring out of state travel because I could not find an Oregon oncologist to provide the treatment.

I traveled to the Bruckner Oncology clinic in NYC four times and completed an additional 9 treatments in California under their guidance. As I take a break from the protocol it seems a good time for a summary update.

Bruckner Oncology is where many patients go when their oncologists say, “There is nothing more we can offer you.” Some patients, like me, start earlier in the process usually motivated by a cancer crisis. Over the last three years the docs at Bruckner Oncology have increasingly wrapped their big brains and huge hearts around recurrent ovca (ovarian cancer) because they like to focus on the cancers that stay especially deadly.

The partnership between the elder Dr. Bruckner and the younger Dr. Hirschfeld is a thing of beauty allowing every patient access to their best collegial thinking. I have worked with oncological teams in four different settings beyond Bruckner Oncology. I have had few complaints. My teams were caring and solid. I accepted the extremely limited contact with my actual doc. Nurse intermediaries represented me between the 15-minute visits with my oncologist. It worked but rarely felt like it encouraged dynamic problem solving.

To arrive at Bruckner Oncology is to leave that tiered system behind. Yes, there are PA (physicians assistants) and receptionists but they are a bridge not a barrier to your bountiful time with the doctors themselves. I can email or call my doctors directly at any point and expect a sprightly response – even when one is in Europe and the other had a baby late the night prior.

It’s a people’s clinic. No one is turned away. Every problem has an answer and they just don’t stop trying creative possibilities. Saying that, patients still die there. Recurrent, late stage cancer is not an easy to tame dilemma. They keep people alive for longer and have bragging rights on some amazing cases headed for hospice and now in their third year of remission with pancreatic cancer and more.

Their starting cocktail, adapted as needed, is built on the idea that lower doses of compatible chemos allow more impact with less damage and less development of resistance. But like any toxic cocktail it can’t be used forever. They start with that cocktail, continue through a post remission period and then tinker from there. Actually, they tinker throughout. That is why the level of contact between the doctor and patient is so high; they really need to KNOW how we are doing. They order a more comprehensive set of labs than most of us are used to. They listen, they look, they wonder. Throughout the infusion, they roam the room on a regular basis. And their interaction with the PAs and nurses is collegial and constant. There is a lot of respect being shared. (It also seems like staff love their jobs.)

What you don’t find there is a moneyed spa. The people’s clinic is crammed elbow to elbow. The nurses had better be damn good because a lot of the triple checks of other places are replaced with high competency expected of the primary nurses. They deliver. Visitors are often made to wait elsewhere or left standing for hours on end. It is crowded when your policy is to accept everyone. My husband noted, “It’s a bit like getting your chemo in a bus station.”

The front desk is understaffed. They can require multiple checks on every request but you see how much they are handling and so you partner with greater grace than you might at an overstaffed office, where systems are ironically often too staffed to work well. Here the problem is the opposite.

The treatment is Medicare covered. They do use creative, proven approaches like iv vitamin c that is yet to be paid for by any standard insurer but they are quick to advise you of out of pocket costs before you incur them.

The location of the clinic is in the Bronx, which is easy to get to if you are comfortable with public transportation. NYC is a Mecca for being able to get everywhere on little money. The American Cancer Society offers free lodging at Hope Lodge in midtown Manhattan – and an express bus available 5 blocks away goes to two blocks from the clinic.

There is no question that travelling to treatment is a challenge. I traveled cross-country and hated it. And it is expensive! I transitioned to a clinic in N California for treatments – still a slog but staying in the same time zone helps. I continue to seek a local provider but as I document on my blog that is not easy to do in our current medical industrial climate.

If you want more options I recommend that you flag this clinic for a time in your treatment when you don’t like what your local team is offering up. I started at Bruckner Oncology when my cancer surged from no evidence of disease (NED) status to being measured 45 days later in inoperable inches. Now I transition to a Phase One clinical trial knowing that in my six months of care with Bruckner Oncology, they disappeared my high volume of cancer. I transition because my cancer is starting to break through the cocktail and my body seeks a chemo break. I have no doubt that I will return to Bruckner Oncology again in this cancer journey.

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

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