504158EF91EAA8A27A35DB2FC810D5BC

Dying, Not Losing

Today I read a wonderful post by Nancy Stordahl of Nancy’s Point about the phrase “lost his or her battle with cancer”. I agree very strongly with Nancy on this point and it made me think of some posts I’ve written on the same topic, but with a more personal slant. There is one in particular that I wrote two years ago, when I thought I’d be dead by now. I’d like to post it again today. Unless I get hit by a bus or something I will die of metastatic breast cancer. But I am not a loser.

Goodbye Without Leaving

 

Back View of a Woman Walking with Bare Feet; A Bundle in a Plaid on her Back.
Turner, 1801. Click here to go to the page at tate.org.uk.

I read Goodbye Without Leaving,  a novel by the late Laurie Colwin, almost twenty years ago. The book is funny and moving and very representative of its time, but what has stayed with me all these years is its epigraph:

Americans leave without saying goodbye,
Refugees say goodbye without leaving.

Refugees say goodbye without leaving. In that sense, living with metastatic breast cancer is like being a refugee from life. It feels like I’ve been saying goodbye to friends, to places, to activities, to life itself for years now. Unlike the refugee who carries home in her mind and heart even though she is physically elsewhere, I am still physically in the country called life but in my mind and heart I am in a continuous process of leaving it.

This is not to say that I am depressed. I am not. (I even have a psychiatrist’s opinion to that effect.) But I am living in the constant knowledge that I will die sooner rather than later, that I am on “borrowed time”. (I don’t care for that phrase “borrowed time” because it contradicts my worldview, but it is convenient shorthand.)

It is now almost nine years since my initial diagnosis, which was at Stage III. The metastasis was diagnosed fairly quickly thereafter, but it was confined to my spine and was stable for a very long time. Since it has begun to spread, though it remains in the skeletal system, I have become more aware of the very real death sentence that is metastatic breast cancer. This has been brought home to me even more by the apparently permanent blow to my immune system (neutropenia) since my most recent round of chemotherapy, over a year ago. I have had to make major modifications to my life style.

The thing is, I am not ready to die. I love being alive, even with all the restrictions that are now my lot. I don’t know how to deal with this and it often makes me cry.

Most people by now are familiar with the Kubler-Ross “five stages” model: denial, anger, bargaining, depression, acceptance. Although Kubler-Ross said that people do not necessarily go through the stages in this order and that not everyone experiences all five of them, people generally relate to them as a kind of preparation course that everyone completes in good order.

Even though I know better, I have fallen into the trap of thinking that way, but again and again I have proved to myself that not only is this not a linear progression, but it also is not a one time passage. It is not as though I have to start with denial and progress steadily through to acceptance and if I don’t, them I’m doing it wrong. (Question: is there a wrong way to die?) I find that I skip around and repeat these “stages” so much that I no longer think of them as “stages” (the word itself implies a progression) but as “states”, states of being, that expand and contract in importance and that change from time to time.

I think I have accepted that I have terminal cancer and that I am going to die much sooner than I otherwise would have. But I don’t want to.

I’ve written elsewhere and in another context about how I feel about acceptance.

Next to humor (and I make some pretty awful jokes), acceptance is the coping technique I do my best to cultivate. Accepting an unpleasant or bad situation – war or abuse or cancer, for instance – doesn’t mean that I endorse it or like it. It just means that I have looked at reality and noticed that it is real. Not accepting reality is fairly insane. I can’t even work to change something until I have noticed and accepted that it is real.

I don’t like that I am going to die, and I am not ready to die, but I know that I am going to die. I can only hope and pray that as my death approaches and becomes more immediate (unmediated by time) that I will be able to live each day with faith and courage, grace and humor to the last.

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9 Responses

  1. Elizabeth J. says:

    “Faith and courage, grace and humor,” beautifully said!
    No one really knows how long we have, but we with metastatic cancer know our days are shorter than most others. And it isn’t the things and places that hold us here. Surely there will be music and flowers and beauty and laughter in Heaven, all without the pain of cancer and treatments. No, it’s the people we don’t want to leave, friends and family. Our hearts ache at the thought of not being at that youngest child’s wedding someday. At realizing grandchildren probably won’t remember us. When we listen to friends making plans for the distant future, one we dare not assume we will have.
    I, too, feel like I am not ready to say good-bye, yet at the same time, I’ve already quietly begun to say good-bye within my heart.

    • Knot Telling says:

      Yes, it’s an intersting dyanamic, and you express it beautifully: “I, too, feel like I am not ready to say good-bye, yet at the same time, I’ve already quietly begun to say good-bye within my heart.”

  2. Susanne says:

    It also bothers me when people say “You’re so courageous!” with that kind of approach. It’s not courageous to accept reality. It’s sensible. It is what it is, and no amount of perky pink ribboned positive thinking is going to change that. It’s sensible to realistic, so one can be realistic about their treatment, the effects, and managing their quality of life.

    You’re smart. You’re sensible. You’re pragmatic. These are virtues worth looking up to. Reality isn’t always pretty, but then, cancer’s not pretty. But it’s a matter of accepting that what is, is, and walking forward from there. “What can I do to make today the best it can be for me?” “What can I do today to manage my symptoms and protect myself for as long as I can?”

    • Knot Telling says:

      I completely agree: cancer is about as far from “perky” as anything can be.
      I don’t feel courageous, either. It’s not courage because it is not a matter of choice.

  3. Nancy Clark says:

    You make excellent points. Those useless platitudes such as “loosing the battle with cancer” have been something that I’ve found annoying for years. The other day, I saw an online article about a cancer death of an actress I’d never heard of. The article in “Latin Times” said that “Mexican actress and singer Lorena Rojas passed away today in Miami at age 44 after battling against cancer. Lorena, who courageously faced the disease with courage and a positive attitude with different stages since 2008,,,” I replied with the following comment, which so far has been “liked” by 83 people, so I think I hit a nerve. Please stop the lazy and inaccurate characterizations of death from cancer as “loosing the battle”. No one who dies from cancer is in a war or fighting a battle. We’re being treated for and living with a disease. Sometimes we are cured, often we are not. Those who are dying from disease are sometimes shamed about “giving up” their “fight” when they may have an illness that is no longer responsive to treatment, and when further treatment may only cause much more suffering and possibly shorten their life. If this is news to you, go to pbs.org and watch “Being Mortal” with Dr. Atul Gawande. Those dealing with life threatening illness deserve a better conversation.

    • Knot Telling says:

      Thank you, Nancy.
      I’m almost done listening to “Being Mortal” as an audiobook. It’s very impressive.

  4. Maxine D says:

    I certainly know what you are saying about the ‘stages’ of grief – DH and I are living with his chronic, incurable illness. One of our major ‘weapons’ is black humour, but yes, we both get antsy at times, and other times there is just the acceptance that this is the way the cookie crumbles. I try to buoy him up when he gets down, and vis versa. It’s just our lifestyle….
    Blessings and prayers
    Maxine

  1. 21 February, 2015

    […] a person “losing their battle” with cancer.  The Cancer Curmudgeon, Nancy, Lori, and Knot all offer their perspective.  And on a separate but related topic, Lara’s post on the […]

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