I have WHAT? Coda: Mastectomy

Breast cancer cellThis week I posted the last of three posts about my diagnosis with breast cancer at the end of 2003. Now it seems appropriate to post about my mastectomy. This post, originally called “Valentine’s Day 2004 or… I left my breast on the Mount of Olives” first ran on February 14, 2012. To recap: Part 1 (discovery), Part 2 (biopsy), Part 3 (diagnosis).

Fourteenth of February, 2004. There was a heavy snowfall. In Jerusalem that is almost as rare as it is in Los Angeles. Many streets were closed, and many people were afraid to drive on the streets that were open because, after all, Who knows how to drive in the snow in Jerusalem?

I was in my bed in the hospital and prepped for surgery. The orderly came to take me up to the operating room and I freaked out. No, don’t want! Stop – there must be a mistake – no, no, no! But all that was mostly on the inside. On the outside I appeared anxious (who wouldn’t be?) but rational.

In pre-surgery a male nurse came over to take report on me and check me over. He introduced himself and asked all the questions. He took a marking pen and made a huge mark on my left breast. Goodbye left breast. I made some feeble joke about not getting the wrong one, and he kindly and seriously told me that he would make sure of that. He stayed with me until I went under the anesthesia.

They wheeled me into operating room. People were bustling around doing their jobs. The nurse stayed with me. I heard two other nurses talking about the snow and wondering aloud if the surgeon would make it in. What? He’s not here yet? Please don’t tell me I’ll have to go through this again.

A surgery tech brought out the instrument tray. I looked at it with what I hoped was an interested expression on my face. It was probably more like sheer terror, because my nurse asked another one to set up the screen in front of my chin. “But isn’t she having a general?” “Please, I’m asking you. She’s looking at the tray.” So they set the screen up. But now I can’t see! How can I be sure you’ll do everything right? I can’t see! 

All of a sudden I felt a bustling, a purposefulness in the room. “Is the surgeon here?” “Yes.” Terror. Oh dear Lord! God, my God, bless his hands. Bless the work of this team. Bless me and give me strength to get through whatever comes next. Dear God, I am so afraid! Be with me now.

The anesthesiologist came up next to me and uttered the canonical phrase, “You’re going to feel a little prick now.” Excellent! The pleasantly heavy calmness settled over me, and…

* * * * *

Pain! I started panting like a woman in labor. Hoo hoo hoo hoo. My friend Jeannie, also a nurse, was standing next to me. She signaled the Recovery nurse who came over with an injection. I slept again.

The next time I awoke, still in Recovery, I was in pain again but aware of my surroundings, aware of Jeannie. Aware of the bulky dressing and the surgical drains where my breast used to be. Aware of the drain under my left arm. Aware that the surgery was over. Aware that pain could be controlled.

Aware that my life had forever changed.

My friend Aliza wrote about this day from her point of view. Please read her guest post here

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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, @medicallessonsauthor of http://www.medicallessons.net/ for the original inspiration for this post.)

Canticle of the Sun

Today, the fourth of October, is the feast day of Francis of Assisi. Popular culture has made of him a sort of tree-hugging hippie – and there is that side to him – but the spirituality he developed and lived is exigent in the extreme. Nothing wishy-washy about it.

The son of a merchant, Francis was not well-educated. Clare of Assisi, the nobleman’s daughter who together with him founded the order that came to be known as the Poor Clares, had much better Latin than he. Nevertheless, Francis composed a number of poems or songs in the dialect of his native Umbria. The only one to have come down to us so far is the Canticle of the Sun, composed shortly before his death. In fact, it is said that the last verse, the praises of “our Sister Bodily Death” was composed minutes before he died.

I love this text because it is at the same time exalted and lowly, magnificent and simple, spiritual and practical – like Francis and Clare themselves.

This translation from the Umbrian text of the Assisi Codex is attributed to Bill Barrett.

Most high, all powerful, all good Lord!
All praise is yours, all glory, all honor, and all blessing. 
To you, alone, Most High, do they belong. No mortal lips are worthy to pronounce your name.
 
Be praised, my Lord, through all your creatures,
especially through my lord Brother Sun, who brings the day; and you give light through him.
And he is beautiful and radiant in all his splendor!
Of you, Most High, he bears the likeness.
 
Be praised, my Lord, through Sister Moon and the stars;
in the heavens you have made them, precious and beautiful.
 
Be praised, my Lord, through Brothers Wind and Air,
and clouds and storms, and all the weather, through which you give your creatures sustenance.
 
Be praised, My Lord, through Sister Water;
she is very useful, and humble, and precious, and pure.
 
Be praised, my Lord, through Brother Fire, through whom you brighten the night.
He is beautiful and cheerful, and powerful and strong.
 
Be praised, my Lord, through our sister Mother Earth,
who feeds us and rules us, and produces various fruits with colored flowers and herbs.
 
Be praised, my Lord, through those who forgive for love of you;
through those who endure sickness and trial.
Happy those who endure in peace, for by you, Most High, they will be crowned.
 
Be praised, my Lord, through our Sister Bodily Death, from whose embrace no living person can escape.
Woe to those who die in mortal sin!
Happy those she finds doing your most holy will. The second death can do no harm to them.
 
Praise and bless my Lord, and give thanks, and serve him with great humility.

Living in an Undefined Space

So. I have Stage IV breast cancer. I am not going to get better. I am already experiencing pain and fatigue. Barring an act of God, I will most likely die within the next few years.

At the same time, I can still take care of myself. I cook (a bit), clean (a little), work (some). So far, I can manage most of my pain with prescription drugs that are non-narcotic. I can still ride my exercise bike, just not as much as I’d like. I can still laugh and I can still love.

It feels selfish when I want to talk to close friends about what are usually called “end-of-life issues”. It feels like self-indulgent drama-queenery to talk about my feelings about the cancer and about dying. I feel like a jerk when I have to cancel arrangements or can’t talk on the phone because I am not well enough. I feel like a selfish, entitled idiot when I find myself crying for no apparent reason. So many people are suffering more than you, I tell myself. Lose the drama. You don’t have it bad in the least!

I don’t pray for healing any more. I pray for God’s will to be done and for the grace to accept everything with peace and joy. It wasn’t a decision to start praying like that; it just happened. I haven’t stopped making plans, but the scale of my plans has contracted a little. The God I believe in does miracles, but by their very nature miracles are unusual. I’m not counting on one.

It’s an undefined space that I occupy now. It’s uncharted territory for me, and I don’t know how to conduct myself. I worry a lot about the people who love me. I pray for them all the time because I know that my dying and my death will be painful for them. I thank God that I am blessed with people who love me – so many people are deprived of that.

. . . . .

On a more practical note – tomorrow (yes, Sunday is a working day here) I go back to the neurologist to see about those holes in my skull (the venous lakes) and my more frequent and intense migraines. It’s a nice change to go to the doctor for something that can be treated.

You can’t always get what you want…

You can’t always get what you want
You can’t always get what you want
You can’t always get what you want
But if you try sometimes you might find
You get what you need. 
(Rolling Stones)

I was disappointed today. There was something that I wanted, not something huge, a little thing that I’d had before and wanted to enjoy again, but for some very good, sensible reasons I can’t have it. I was disappointed, even though I completely understood why I can’t have it. “Life is like that,” I said. “I’ll survive.” (A bit of irony there for those who know how much I don’t like that word.)

And I will, of course. It’s a little thing. It’s as though they were out of anchovies at the pizza place so I had to be content with a different kind of topping. I have the choice to sit and pout or to enjoy the other kind of pizza. Me, I’ll take the pizza every time!

Sometimes, though – and this is just between you and me, Internet – sometimes I almost wish I wasn’t so mature and sensible. Sometimes I wish I could pout and shout and stamp my foot and insist that I am very, very special, so the pizzeria can good and well go out and find me some dang anchovies! (Why yes, I am four years old.)

It wasn’t anchovies that I wanted and upon reflection I am pleased that I can’t have what I thought I wanted. It would have been to the detriment of someone else, so ultimately to my own.

It is humbling to realize that I am still so self-centered and selfish that I can seriously consider doing something that would not be in the best interests of another person just to satisfy my own wishes. That kind of “behumblement” is good. It is an excellent reminder, in this Lenten season, that I am not put on this earth merely for my own pleasure.

I have a responsibility to the others in my life and to all the people I touch in one way or another, a responsibility before God, whom I love and want to serve with every fiber of my being. My choices have an impact on me, and on everyone else, too. Your choices have an impact on me. We are not alone.

I got what I needed today. Because I am so far from my goal, I am still disappointed that I didn’t get my druthers, but that is not very important. I got what I needed, so thank you.

Abyss: The depths in me call out to the depths in you.

 

Abyss by Karol Wojtyla (John Paul II) Translation by Jerzy Peterkiewicz
Abyssus abyssum invocat (*)
 
You always see it as space
filled with cascades of air
where glass splinters reflect and glitter
like seeds planted in distant stones.
 
Now observe the abyss that glitters
in the eye’s reflection.
We all bear it in us.
When men are gathered together
they shift the abyss like a boat
on their shoulders.
 
Nothing to bypass in this commotion.
Take a ray from the eye and write
your sign.
Though you see no abyss in the mind
don’t imagine that it’s not there.
Light may not reach your sight, but the boat
shifts on to your shoulders:
the abyss is clothed in flesh,
become fact
in all men.

(* This is part of Psalm 41:8 in the Vulgate, 42:7 in English. In one translation, “Deep calls to deep in the roar of your waterfalls.”)

When I was very young, a teacher wrote on the chalkboard at the front of the classroom “Man is a gregarious animal.” I don’t remember why she wrote it, but there was a kind of solemnity about the moment that has stayed with me. We need one another. It is in our nature, part of the stuff of our being. And when there is no one there, we feel incomplete. There is a gaping hole at our center, an abyss, if you will.

The depths in me call out to the depths in you.

The psalmic verse that Wojtyla uses as a subtitle reflects the psalmist’s sense of detachment from God, of great loneliness, of painful awareness of his separation from the One he longs for above any other. We hear it from the very beginning of the psalm: “As the deer pants for streams of water, so my soul pants for you, O God.”

The depths in me call out to the depths in you.

“The abyss is clothed in flesh.” The abyss is within each of us, a part of us. We need one another. We complete one another. We fulfill one another.

The depths in me call out to the depths in you.

I am a solitary by choice as part of my religious and spiritual walk. I work a few hours a week with other people, but mostly alone. I spend six to eight hours a day in prayer and meditation. Several times a year I go away to live entirely alone for a week or more, and at least one weekend a month. Those are intense periods of being with my Creator in a special way.

The rest of the time I do my best to allow myself to be touched by the people around me, and to touch them. It might be with someone who comes to me for help, or with a coworker. It might be by writing this blog or by commenting on someone else’s blog. It might be by writing a letter or sending a photo. It might be in my prayer and meditation that I seek to remove the barriers that divide us; it might be by direct action and dialogue.

I do not have complete success all the time. I don’t expect it. I keep at it.

The depths in me call out to the depths in you.

Invictus: Survival, Autonomy, Faith

William Ernest Henley Vanity Fair 1892-11-26 (from Wikipedia)

A smarty and funny Twitter friend and blogger recently reminded me of William Ernest Henley’s poem Invictus. Think of it as a Victorian teenage boy’s version of Gloria Gaynor’s I Will Survive. At the dawn of his adolescence, Henley was stricken by osseous tuberculosis, eventually having to endure a below-the-knee amputation at age 17. He must have suffered severe pain throughout his teen years and young adulthood. It is said that Invictus was inspired by the amputation; it was published in 1875, when Henley was 26.

Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

Far from expert on the Victorian era, I have the impression that it is a time of contrasts: sickly sweet sentimentality coyly nestles up to the robust “manly virtues”. It is the era of “muscular Christianity” and of strictly defined class structure and social systems. It is an era rife with sexual taboos, but its pornography is read to this day. An era of contrasts, of division, of merciless social expectations. Individuality was not encouraged.

The title Invictus (“undefeated” in Latin) was not Henley’s, but that of a later publisher. But it is perfect, isn’t it? A young boy suffering from a painful, usually fatal illness. Boys don’t cry in that time and place; they soldier through. Despite looking at first blush like a poem of extreme self-reliance, to me Invictus reads like a battle cry of strong faith in the midst of desperate circumstance.

He recognizes the reality of his illness and his grief at the loss of health and limb (the night that covers me, black as the pit) as well as the reality of his “unconquerable soul”. He graphically describes his physical and mental suffering (Under the bludgeonings of chance / My head is bloody…) and his survival (…bloody but unbowed). Looking forward, he sees nothing but more trial, more suffering, death. And then the afterlife:

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

My reading of this, which may be unorthodox, looks very much like Erich Fromm’s point in Man’s Search for Meaning. I am living in circumstances I cannot change or control, but one power will never be taken from me: the power to choose how I deal with it. And the way I deal with circumstances of necessity changes the way they affect me. It is a dynamic relationship: by changing myself I have changed reality.

There is a Jewish saying common among the Orthodox and the Hassidim: הכל בידי שמים חוץ מיראת שמים. Loosely translated, it means “Everything is in God’s hands except fear of God.” That is where free will comes in.

I can choose how I live. As a person who believes in the Christian afterlife, I believe that how I live today will affect how I spend eternity.

I am the master of my fate:
I am the captain of my soul.

I shall be made thy music

Since I am come to that holy room,
   Where, with thy choir of saints for evermore,
I shall be made thy music, as I come
   I tune the instrument here at the door,
   And what I must do then, think now before.
…..

This is the first stanza of John Donne’s “Hymn to God my God, in my Sickness”. Donne was an Englishman who lived on the cusp of the 16th and 17th centuries, a man who sacrificed career, reputation and even freedom to marry a woman. He traveled extensively abroad and came home to be a lawyer. A womanizer in his youth, he fathered twelve children with his wife and never remarried after her death; from a family of Catholic martyrs, including Thomas More, he became a member of the Anglican clergy and was named Dean of Saint Paul’s. He is perhaps best remembered today for his poem “No Man is an Island”. He died, some think of stomach cancer, in 1631 at the age of 59.

Donne’s life seems very modern to me, as peripatetic and mouvementé as that of a Baby Boomer. It certainly reminds me of mine. I bumped around for decades among cultures and subcultures, from continent to continent, career to career, from mainstream to margins and back again,  before coming to rest here in Jerusalem, with a life that I could never have imagined for its depth and breadth and luxurious comfort of soul. Yes, comfort of soul, even while the body is tired and ill.

Why do these particular five lines speak to me? I am living with cancer, not dying from it at this time, yet the reminder of death is never far from me. I relate to the prospect of my own death in different ways at different times; for now, I am more or less matter of fact about it. Death will come to me, it will come to you, it will come to everyone now living. Fact of life.

Donne’s concept of death in this poem is far from dispassionate. I shall be made thy music – I will become God’s music, the song of the heavenly choir, and now I am in the anteroom, looking in and preparing myself for the moment I enter. I tune the instrument, the part of me that is eternal, here at the door / And what I must do then, I think now before.

With the same firm, gentle and precise touch that once tuned my viola, my guitar, now I tune the instrument of my eternal being and prepare for the moment when I am made music.