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

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18 responses »

  1. I think I like the term ‘veteran’ better than any other I’ve seen so far. Dying is such a taboo subject in our society that nobody wants to talk about it. Thank you for talking about it.

  2. I like the term ‘veteran’ best of all too. You share your words and your journey with us Marcy, and still we don’t know how to talk about death and dying. Thank you for trying to show us how.

    • You’ll have to meet Sawyer! He fits in the basket quite well. I am sad that the new drug I start this week might end my biking career until summer as no cold air can touch my body. I can protect most of me, but keeping it out of my mouth, throat and lungs might not be workable on the bike. Wrong! xoxo

  3. I love you Marcy. Each time that I read your thoughts and feelings, I am overwhelmed with how well you can express yourself. I always share your thoughts with my friends and family members with the hope that this is OK with you. Words that I want to say are hard to find. I wish that I was as talented as you are. I think of you often.

  4. Marcy,

    I am so sorry that this cancer journey has been so difficult for you. As I’ve shared in the past with you, I was diagnosed with advanced staged cancer 4 years ago. At that time, I had surgery and I was told by my first oncologist who did my surgery that my cancer was “incurable.” However, he advised that by doing chemo or chemo/radiation I could give myself “some extra time”. I chose not to do the adjuvant treatment because I chose quality of life over quanity. My oncologist was very upset with me over this decision.

    My second doc…..because I relocated from the East Coast to the West Coast…. agreed that if I didn’t do the chemo or chemo/radiation there was a 99% chance that my cancer would return. I still chose quality of life over quanity and did not do the adjuvant treatment. However, at that time I had a doctor who respected and honored my decision. We moved forward and never discussed my choice again. Now, here I am 4 years later…..still without a return of my cancer.

    With an advanced stage cancer diagnosis, none of us knows what the outcome will be….my cancer could return next week for all that I know. All we can do is choose the path that we think is RIGHT FOR US….find a doc who respects that decision and then let go. We are all going to die at some point in time…..none of us knows exactly when….so if we are wise, we will make the best of the time we have on this earth. Plus, I feel very grateful that I live in a state that has a Death with Dignity Act.

    I wish you peace, Marcy.

    Sarah

  5. Thank you for this thoughtful post. As metastatic lung cancer patient who lives from scan to scan, I know what you’re living, being kept alive by chemo. I’ve been there.

    For now, I’m lucky — I take a targeted therapy in pill form and it keeps my cancer at bay. For me, reframing my disease as a “chronic illness” is not an attempt to avoid thinking that my cancer will likely kill me. It simply gives me and others hope that we might survive a year, or maybe more, rather than dying within a year of diagnosis, as the majority of lung cancer patients currently do.

    I too have blogged about “The Manner of My Death,” “Sharing End-of-Life Preferences” and similar topics. I’m glad to see your thoughts in a magazine — now more people will have cause think.

  6. Congratulations on being chosen by YES! Magazine and writing so well on terminal illness living. I agree with you that Veteran is the better word for living with cancer. Also, thank you for sending Nancy Novak in my direction. We have worked something out.

  7. Hi Marcy, as usual, excellent commentary! I hear a lot of the “you look great.” It’s so much easier for others to say that….than, “you look terrible.” I love reading about your perspective on terminal illness, and also I like the idea of a 3 month plan.

  8. Great article! I also get a lot of “You look great”. But how am I suppose to look? I also had a reaction
    to my carbo treatment last week. I have been doing so well. Makes me a little sad. Keep up the great
    work. Julia

  9. Marcy, thank you again for sharing some very important truths about the process of living with cancer and facing death. We who are cancer free are often at a loss for words when talking with someone who lives with it. Your thoughts and insights are helping not only those with cancer but also those of us who have friends and loved ones dealing with it. Love and miss you.

  10. It is such a weird place to be, isn’t it? I keep thinking “This isn’t how I expected my life to go. This isn’t how I expected my death to go, either.” I still struggle with where I want cancer to be in my life. (Since it is here, since it is staying, I have to accept it and make room for it.) At this point, I don’t want to hide it, but I find that I don’t want it front and center, either. Still not sure where it will end up. Love your blog, and recently found we have some mutual friends, from Mak-a-dream for you and Harmony Hill for me.

  11. Pingback: Counting Down to the New Year: 5 Blogs to Check Out | Life in Slow Motion

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