Chronically terminal rumination

Last week I published a post about ways of referring to people with cancer at different phases of the disease (Cancer Words), mostly based on an article and a letter in the Journal of Clinical Oncology. (The link will take you to a Medscape Nurses review of the discussion.)

You know how a cow chews her cud? (Bear with me here.) She ingests her food and it goes into the first part of her alimentary canal, the rumen. Then she regurgitates the partially digested food and chews it up some more. This is called chewing her cud, and it is the characteristic of animals we class as ruminants.

Now then. This should make it clear that ruminating is not unlike throwing up a little in your mouth, an unpleasantness I try to avoid. On the other hand, some concepts do bear more than just passing consideration, and how to refer to my disease is one such. (Okay, at this point I should probably let you all know that I’m writing this post while under the influence of oxycodone. Keep up with the drivel, and we’ll ultimately get somewhere together.)

My problem with the terminology can be summed up like this:

• I am not a survivor. I haven’t died of cancer, but there are secondary tumors at various places in my body. Active cancer.
• I am not terminally ill. That is, I am terminally ill, but not in the sense of qualifying for hospice at this point.
• I am chronically ill, but not in the sense of someone who has schizophrenia or diabetes or hypertension, in that I will eventually die of this chronic illness, God willing.

(“God willing” meaning that I’ll die of cancer unless  a war or terrorist attack or something, which is not all that unlikely around here, kills me first. Or the end of the world. Whatever. The point is, I’d rather live out the span allowed me, even with chronically terminal or terminally chronic cancer.)

In a very real sense, I am Living in an Undefined Space. I often say I am living with cancer, but cancer does not play well with others and is not a good roommate. I wrote about this in one of my very first posts, Have I survived yet? At that time, I wrote:

Living with doesn’t always mean “liking” or even “getting along”. Successfully living with a spouse or a roommate or in a family means respecting each other’s personal space, not impinging on their rights, not imposing our own will on the other one without their consent. Sometimes it means speaking up, protecting our space and our rights because the other one doesn’t respect them. I didn’t invite cancer into my life, but in it came. Cancer is not good at sharing space, does not play well with others. Okay, then. That’s a reality I have to deal with. Cancer and I are living in the same body now, so how can we do that successfully?

Over a year and a half later, I can say two things with certainty:

I am still alive. (Yay!)

I still don’t have the answer.

Cancer Words

I’ve written quite a bit about the power of words. Words are potent, sometimes in magical. Words do not only express our lived experience, they also give it shape, name it, describe it. One aspect of philosophy of language deals with the interaction and mutual influence of words and thought. Fields as diverse as linguistics, clinical psychology and economics address this idea in different ways.

But everyone agrees that words are important, powerful. That is why, like many other people, I care about what labels I attribute to myself and others. I have written quite a bit about that. You might want to look at The Problem with Surviving and Have I Survived Yet, for example.

So it was very interesting to find a link to “After Cancer: Debate About Terminology Beyond Treatment” in today’s Medscape Nurses newsletter. This is part of a discussion that began with “Cancer Survivorship: Why Labels Matter” (J Clin Oncol. 2013;31:409-411) by Canadian social scientists Kirsten Bell and Svetlana Ristovski-Slijepcevic.

Bell and Ristovski-Slijepcevic clearly attribute importance to the terms we use. The Medscape article quotes them: “Words not only describe, but construct, the phenomena under question,” they wrote, explaining that the term “someone who has had cancer” may ignore “the ongoing presence of cancer in the lives of many” who have had the disease.”

The discussion is continued by Paolo Tralongo and his colleagues, who suggest a range of terms, but attribute the importance of terminology to the way a term helps or hinders a patient in coping with the disease. They suggest a range of terms–patients with…

• acute cancer (for people in treatment)
• cured cancer (for people “who have long been disease-free and have reached a time when their mortality risk does not exceed that of their age and gender peers”)
• chronic cancer (for people with advanced cancer that alternates remissions and relapses)
• chronic cancer, active phase

I strongly encourage interested people to follow the link above to the Medscape article. There you will also find links to the original articles and letters in the Journal of Clinical Oncology. 

The word “survivor” annoys me for a number of reasons that I’ve described elsewhere. The main reason it annoys me at the moment is that I haven’t survived it yet; I still have cancer in my body. The term “chronic cancer” intrigues me. My stage IV disease is advanced, but not yet terminal (i.e. I am not expected to die in the next several weeks or months). Perhaps “chronic” is the best way to refer to it.

“Chronic cancer” has the advantage of being clear, specific and easily understood. It is very low on drama, even less dramatic than “living with cancer”, which has been my preferred term to date. I’m not sure yet, but I think I like it.

(As terminology. The disease itself is one of the worst things that has ever happened to me.)

Saying Goodbye Without Leaving

Back View of a Woman Walking with Bare Feet; A Bundle in a Plaid on her Back. Turner, 1801. Click on the image 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.

Wednesday Video: Stephen Fry Kinetic Typography

October being Anniversary Month, I am republishing some of my favorite posts, so why not repost a favorite video? I first posted this “Wednesday Video”  the 28th of March 2012. Enjoy!

A wonderful video by Australian graphic artist and web designer Matt Rogers at Rogers Creations, making delightful, creative use of a text written and spoken by Stephen Fry. Is it a rant? Is it a plea for sanity?

It is certainly a delicious interlude for eyes and ears and mind.

Fundamentally happy

October being Anniversary Month, I am republishing some of my favorite posts. This one seems appropriate after my drama queenery of last week. It was originally posted on January 25th of this year. I chose it because it’s always good to remind myself that I am in charge of deciding where to put my attention. Thank you for reading.

Today I read a post called “Pigeons” in one of my regular blog-reads, Table for One by Solitary Diner. I stopped short at this:

But as I thought about it, I realized that despite having a long list of potential self improvement projects, I am fundamentally happy.  Not all the time, certainly not at 4 am on a night float shift when I want to toss my pager into the fires of Mordor, but overall I’m happy.  And with very good reason.  Balancing out my list of pigeons of discontent is a very long list of things to be happy about. 

And I thought – hey, me too! I am fundamentally happy. My next thought was – When did that happen? Without going into a lot of detail, I can say that I have had a lot of pain in my life. I’ve lost people I love; I’ve been betrayed by people I trusted unconditionally. I have experienced catastrophic illness in my loved ones and in myself. I have been in material need. I have been in spiritual desolation. I have borne intense physical and emotional pain. Somewhere along the line, though, I slowly came to the deep realization that even though I cannot always control what happens to me, I can control how I relate to it. Even though I cannot control what feelings come up in me spontaneously, I can choose which ones to allow to stay. I can choose how I react to situations and feelings. “Feelings are not objective reality; they are our subjective reactions to objective reality.”

Ten or fifteen years ago I decided to make being kind to people my default mode of behavior. Aside from the positive results one might expect – more friends, people enjoying my company, better relationships in work and private lives – I noticed my inner world changing, too. As I began to be gentler with the people around me, I somehow started to become gentler with myself.

A few years after that, I began to realize that “feelings are not the boss of me”. I can feel like moldy bread warmed up on a rusty shovel over a cow dung fire and still smile at the person who comes into the room. I discovered that I am not unidimensional or monotonal and that I can feel sad about something, can feel grief and pain, and be honest about those feelings without letting them take over my essential being. My fundamental happiness takes nothing away from being sad or angry at a person or a situation, and the sadness or anger do not destroy the fundamental contentment.

I am a deeply spiritual and religious woman with an intense prayer life. This, I have no doubt, plays an important role in my fundamental happiness. My Creator created me as a human being with emotions, “and He saw that it was good”. I am grateful for the ability to feel emotions, because I have also known the flat, internal deadness of depression. But just as I do not have to allow myself to be ruled by my appetite for food or sex or exciting adventures, I do not have to allow myself to be ruled by my feelings.

Just as I choose to “live with” cancer, I choose to live with my feelings, knowing that they come and go, ripples on the pond of my contentment.

In the 13th century, Clare of Assisi wrote to Ermentrude of Bruge:

Our labor here is brief, the reward eternal; may the excitements of the world, fleeing like a shadow, not disturb you. […] Gladly endure whatever goes against you and do not let your good fortunes lift you up: for these things destroy faith and those demand it.

Living intentionally and being the master of our feelings are far from new ideas. Having found my center, my fundamental happiness, I can afford to take a couple of steps back from the “excitements” of my inner world and decide where to place my energy.

I have no idea if I’ve made any sense in this post. I’d be grateful for some feedback.

It’s your own fault! (October Repeat)

October being Anniversary Month, I am republishing some of my favorite posts. This one is on a recurring theme. Thank you for reading.

“Didn’t you get regular check-ups? Is it in your family? Do you smoke? You bottle up your feelings too much and now your body is expressing them for you. You should meditate. You’re not eating properly. Did you or your parents ever have dealings with the occult? There must be some secret, unconfessed sin in your life. Why don’t you pray for healing? Don’t you have enough faith? Why did God do this to you?”

Every one of these comments was addressed to me by a friend or acquaintance shortly after I was diagnosed with cancer. At first I tried to reply politely: No, it’s not in my family, I don’t smoke, the people I live will be the first to tell you that I am not one to shy from expressing her feelings… and so on. After a while, I quit replying at all because I was not sure that I could do so politely. “Who do you think you are,” I wanted to scream. “Don’t you realize that these questions accuse me of giving myself cancer? You’re blaming me for being ill! I know your questions and comments are your way of expressing interest and concern, but why is it that you suddenly feel utterly free to make the most personal comments and speculate about the most intimate details of my spiritual life?”

I soon came to a different understanding of these intrusive and often insulting questions and comments. They are not so much about me, as they are about the person who is addressing me. We human beings are accustomed to having a certain amount of control over lives. Psychologists tell us that helplessness is the most difficult and painful of emotions. If I can point to a behavioral, environmental or spiritual factor in my neighbor’s catastrophic illness, then I can be reassured that I can avoid that illness by controlling those aspects of my behavior, environment and spiritual life. But if this terrible thing “just happened” to my friend, why it might “just happen” to me. And that would be intolerable.

When I was a teenager I was awakened early one morning by a serious earthquake. It was the scariest thing I had ever experienced: I put my foot down on the floor and the floor wasn’t there. The noise came from everywhere and nowhere. Terror. Sheer, visceral terror. The following days saw the aftershocks. I wasn’t alone in being paralyzed by fright by them, each as strong as another earthquake. Some psychologist came on TV or radio, I don’t remember, and suggested a way to cope with aftershock fear.

Get angry, he said. Stamp your foot, yell, command the earth to stop shaking! Our fear is sub-rational, he explained, based on our powerlessness in the situation. By acting as though we have power over the earthquake, we somehow trick those sub-rational parts of ourselves into believing that we actually have the power. Aftershocks last several seconds and stop, but our sub-rational being doesn’t know that. Hey! I commanded the earth to stop shaking and it did! I’m not a powerless victim; I can take control.

A similar mechanism is at play, I believe, when people try to find the cause of my cancer in something I could have controlled but didn’t. I think much the same sub-rational motivation lies at the heart of a great deal of victim-blaming behavior. She shouldn’t have worn her skirt so short. He shouldn’t have been out walking that late. She should have had an alarm system installed. He should have paid more attention. It’s their own fault. It couldn’t happen to me. I’m in control. I’m safe.

Surely there must be a way to make ourselves feel safe without resorting to blaming others.

Have I survived yet? Part I (October Repeat)

October being Anniversary Month, I am republishing some of my favorite posts. Today’s is the first of two posts that attempt to explain my attitude to the cancer and why I choose to say that I am “living with” cancer; I am not fighting it or suffering from it, and I haven’t survived it. The second part is here. Thank you for reading.

This is not a cancer blog; it’s a blog about my life. My life is about flowers and lace and words and languages. It is also about having only one breast and limited use of one arm, about periodically going to a place where they inject deadly poisons into my veins. Remember “We had to destroy the village in order to save it”? (See Ben Tre if you are too young to remember or old enough to have forgotten.) They had to mutilate my body in order to save it. They have to poison me in order to heal me.

Once again, my life is about mysteries and contradictions, about thread wrapped around air.

The vocabulary of cancer treatment is often very violent. We fight the disease, we kill the wildly proliferating cells, we destroy the tumor, we wipe it out. I hate that approach. It is completely foreign to my core values, to how I try to live.  I try not to use those words. I prefer to say that I am living with cancer. When I want to be French and Franciscan and whimsical, I even talk about frère cancer, borrowing a page from Francis of Assisi who wrote about “our sister bodily death” in the Canticle of the Sun.

I don’t use the vocabulary of war in talking about cancer because war has a winner and a loser and no one knows which side is which until the dust clears. I prefer the language of coexistence: living with. The cancer and I share space. That doesn’t mean I don’t treat the disease, and I’d have infinitely preferred not to have to share, but it does mean that I do not invest my mental, emotional and spiritual energy in battle and thoughts of destruction.

Our words inform our thoughts, and our thoughts shape our experience of reality.

Living with doesn’t always mean “liking” or even “getting along”. Successfully living with a spouse or a roommate or in a family means respecting each other’s personal space, not impinging on their rights, not imposing our own will on the other one without their consent. Sometimes it means speaking up, protecting our space and our rights because the other one doesn’t respect them. I didn’t invite cancer into my life, but in it came. Cancer is not good at sharing space, does not play well with others. Okay, then. That’s a reality I have to deal with. Cancer and I are living in the same body now, so how can we do that successfully?

(I would like to thank Dr. Elaine Schattner, @medicallessons, author of http://www.medicallessons.net/ for the original inspiration for this post.)

Despair and Hope

As voluble as our generations are when talking about our feelings, we didn’t invent that kind of emotional transparency. In fact, I sometimes think that earlier generations were more creative about it, particularly the poets.

It’s pretty obvious to anyone who looks at my poetry posts, that Emily Dickinson is one of my favorites. Feminine, independent, strong, emotional, spiritual, clever and intelligent – few poets touch me as she does and has done since I first read her when I was a child. Each of these poems expresses a state of being that is opposed to, yet intimately connected, with the other.

First, “It was not death, for I stood up” (355):

It was not Death, for I stood up,

And all the Dead, lie down –

It was not Night, for all the Bells

Put out their Tongues, for Noon.

 

It was not Frost, for on my Flesh

I felt Siroccos – crawl –

Nor Fire – for just my marble feet

Could keep a Chancel, cool –

 

And yet, it tasted, like them all,

The Figures I have seen

Set orderly, for Burial

Reminded me, of mine –

 

As if my life were shaven,

And fitted to a frame,

And could not breathe without a key,

And ’twas like Midnight, some –

 

When everything that ticked – has stopped –

And space stares – all around –

Or Grisly frosts – first Autumn morns,

Repeal the Beating Ground –

 

But most, like Chaos – Stopless – cool –

Without a Chance, or spar –

Or even a Report of Land –

To justify – Despair.

….

And then, the better known “Hope is the thing with feathers”(254):

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,

 

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

 

I’ve heard it in the chillest land
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

Take Umbrage or Move Forward?

This poem by Ben Downing appeared in the July/August 2012 print edition of The Atlantic. By means of simple couplets and just four uncomplicated sentences, it communicates a home truth: “[umbrage] makes us less”.

Umbrage

Taken, given:

friendships riven.

From shadow or shade,
it instantly puts paid

to hard-won clarities
and causes us to freeze

up with unearned righteousness;
it makes us less.

How much better to combat it.
We should take umbrage at it.

…

There is a quotation lately attributed to Benedict Arnold, the war hero-turned-traitor of the American Revolution: If your great umbrage would care to meet my high dudgeon at 12 paces, I would be happy to entertain you at dawn. I haven’t been able to confirm the quote or to find any context for it; in fact, it appears to have originated in a History Channel film. Be that as it may, it is a wonderful example of where taking umbrage can lead – not to resolution of problems, but to “friendships riven”.

You know those people who take everything personally? I used to be one of them, and let me tell you – it is a painful way to live. I spent hours – days! – feeling hurt, angry, frustrated. I was paralyzed,  chewing over what I should have said, imagining what people thought of me, planning how I would get back at them. (I never did.) In other words, I was blocked. There was no way to move forward while I sat wallowing in so much powerful negativity.

Eventually, I worked that out and realized that I had to start taking responsibility for my feelings. The self-help world is full of pithy sayings to this end. What people think of you is none of your business. When people insult you, it says more about them than about you. No one can make you feel inferior without your consent. Feeling resentment is like drinking poison and expecting the other person to die. I decided to quit worrying about the others and to make my life as good as I possibly could. I never looked back.

Of course, I still get angry sometimes. I can still feel hurt by an inconsiderate remark. I still react with pain to insults. The difference, I think, is in the duration and in what I do with the feeling. These days I can usually realize how I’m feeling, understand why I feel that way, make a decision where to go with it. Sometimes I have to look at myself and deal with the truth in hurtful words, change myself. Sometimes I can laugh off the insult as being based in the other person’s inner world.

Sometimes they really hit on a sensitive point and it’s not so easy to move on, but I do my best to get over it with the resources I have at my disposal. It’s not always quickly accomplished, but it’s always the goal. You know the saying “Living well is the best revenge”? That’s not the reason I work on myself and try to become a better person, but as a side effect it’s not entirely unwelcome.

Death. Change. Life.

The Oasis of Ein Gedi, west of the Dead Sea.

It’s a poetry reading kind of day and I turned, as I so often do, to Emily Dickinson. Thumbing through a couple of collections, here is where I stopped (poem 749):

All but Death, can be Adjusted—

Dynasties repaired—

Systems—settled in their Sockets—

Citadels—dissolved— 

 

Wastes of Lives—resown with Colors

By Succeeding Springs—

Death—unto itself—Exception—

Is exempt from Change—

…

It’s odd to read such an optimistic poem in which death features so prominently, but it exactly suits me at this moment.

All but Death, can be Adjusted… I’ll speak to this a little more when I get to the last line of the poem, but for now I am reading it at face value. Death is the only thing that is inexorable, unavoidable, unchangeable.  Death will come to all creatures. It is the only inevitable.

Everything else can be Adjusted, changed somehow. Dynasties and governments can be repaired or replaced. Systems (for me right now that speaks loudly of bureaucracy) can be settled in their Sockets, they can be dealt with, controlled, tamed. Citadels, seats of power, both physical and moral or psychological, can be dissolved, can be conquered or undermined, made to dissapear.

Wastes of Lives can be resown with Colors. This is a particularly beautiful image. Imagine someone’s painful, lonely, guilt-ridden, fearful, anxious, limited life as a broad expanse of wasteland. Now watch as it gains new life By Succeeding Springs – springs in both senses: water sources and seasons of growth. Spring after spring floods the wasteland and changes it until it is resown with Colors. We have all seen that, many of us have experienced it, some of us have been privileged to work with people in the wastes of their lives, slowly and patiently, until they, too are resown with Colors. I can think of no greater joy, no greater privilege.

So we have see that Dynasties and Systems and Citadels and Wastes of Lives are not inevitable, they can be changed. Only Death–unto itself–Exception / Is exempt from Change, says Dickinson.

Yes… and no, says Knot Telling.

Yes, death is inevitable. Everything that is alive will one day die. So in that sense, yes: All but Death, can be Adjusted. But for me, there is a larger sense that derives from my spirituality and my religious beliefs.

I believe that death itself is a change, a passage from one plane of existence to another, just as real but very different. Theologians and mystics provide all kinds of (sometimes amusingly conflicting) details about in what the difference consists. I don’t worry myself about such things. I content myself with knowing that my bodily death will come, probably sooner rather later at this point, and that something else, something unimaginably different and wonderful awaits me. As Francis of Assisi said in The Canticle of the Sun “Be praised, my Lord, through our Sister Bodily Death, from whose embrace no living person can escape.” Yes, embrace! When our Sister Bodily Death comes for me, I will embrace her and we will dance as she guides me through to the next thing.

As I’ve said here before, and I insist again, I’m no bliss ninny. I am not rushing headlong toward death, but I know it will come and with Stage IV cancer that will most probably be sooner rather than later. I am concerned about being dependent on others at the end of my life, but I am not in the least worried about what will come after I die. As C.S. Lewis wrote in Till We Have Faces: A Novel of Cupid and Psyche, “Death opens a door out of a little, dark room (that’s all the life we have known before it) into a great, real place where the true sun shines and we shall meet.”

See you there, when the time comes!