Cancer cannot take this away

Image credit: pixelsaway / 123RF Stock Photo Used with permission.

Image credit: pixelsaway / 123RF Stock Photo
Used with permission.

Yesterday I was in enough pain to take the stronger medication for it. I was also sad and upset about several unrelated bits of bad news that I’ve received recently. I was feeling alone and needy and, truth be told, more than a little sorry for myself. I spent most of the day in bed, feeling drugged and loopy and groggy and dozing off and on, feeling needy and weepy when I was awake. It was not a good day.

Today I woke up and I’m in enough pain to take the stronger medication for it. I am still sad and upset by the bad news. I am still alone and I still need help with simple tasks. But I am not feeling needy, I am up at the computer writing this post, and I am having a friendly chat with my home help, L, who is here working her magic.

So what is the difference between yesterday and today? Yes, my home help L the wonder-worker is here, but the truth is that hours before her arrival I was up and showered and dressed in clean clothes and sitting at the computer doing my sorely neglected email. What changed?

The pain didn’t change. The fatigue didn’t change. The cancer didn’t go away. The sleep issues were not resolved. Why am I up and smiling today? I think it’s the A-word: attitude. Before I went to sleep last night I made a decision to change my attitude.

It’s as simple as it sounds and as difficult as it sounds. I wrote a short update in a Facebook cancer support group to which I belong, and I was complaining about everything from bone tumor pain to mosquito bites. I knew that I would get lots of “poor you!” and hugs and supportive comments and a joke or two in response. But by the end of the my update I found myself writing:

The best thing on earth is that tomorrow is a new day! And also I was able to get up and make some food and drink. And my home help is coming tomorrow. So I should just get off the pity pot and make a gratitude list. 

Damn. I hate it when I talk myself out of my moods! 

I somehow allowed myself to change the focus, to look in a different direction, to change my attitude. Sometimes that’s all it takes.

When I was an undergraduate (a long, long time ago in a galaxy far, far away) I was profoundly impressed by Victor Frankl’s Man’s Search for Meaning. This is one of the books that changed my life. In particular, this: “Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.” 

That blew me away forty-some odd years ago and it still does. No matter what cancer takes away from me. No matter what bad news I receive, no matter what problems I face, I have the freedom to choose how I relate to it. This doesn’t mean mindlessly smiling through a crap storm (remember – not recognizing reality is insane), but it means that I can choose to collapse under it, to fight it, to accept it, to try to change the circumstances, to move out from under it. I can choose to identify myself with the crap storm or to remember that it is separate from me, it is not me. As a religious woman, I can choose to put my faith in the hands of the Creator, remembering that in my religious tradition God helps those who help themselves.

Whatever I choose–even if I choose through inaction–it is my choice. That is the power that is left to me, “the last of the human freedoms”, and when I choose to exercise it I reclaim some of my personhood. My personhood, the choice of my attitude: cancer cannot take that away from me.

Don’t forget: Anyone who is affected by metastatic breast cancer is invited to submit a post for me to publish during October. If you are interested, please contact me at the email in the sidebar or tell me in the comments. We want to hear your voice!

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In the Land of Invisible Women by Qanta A. Ahmed

In the Land of Invisible Women: A Female Doctor's Journey in the Saudi KingdomIn the Land of Invisible Women: A Female Doctor’s Journey in the Saudi Kingdom by Qanta A. Ahmed

My rating: 2 of 5 stars

The writing ranges from indifferent to awkward, but that is not the only reason I rate this books as merely “ok”. It had the potential to be so much more than it is.

Dr. Qanta A. Ahmed is capable of close observation–no critical care physician can lack this ability–and some of her descriptions are very closely observed, indeed. It is a shame that these are mostly limited to the physical appearance of the people she meets and of their clothing, homes and cars.

Yet we cannot call Ahmed shallow because the religious experience she underwent in the Kingdom was clearly deeply felt. I am disappointed that she did not spend more time exploring it and less time looking for well-worn metaphors to describe it.

The main problem with In the Land of Invisible Women, in my opinion, is that it never quite seems to decide what kind of book it is. Is it the description of the author’s religious itinerary? Then why leave that almost exclusively to the section on her Haj (pilgrimage to Mecca)? Is it the story of a Western-trained double-boarded physician who happens to be a woman practicing in the very different and restrictive conditions experienced by female physicians in the Kingdom? Then tell us more about that.

Is this a book about Saudi culture? Then spend less time on describing cars, jewelry and clothing and more time on behavior, attitudes, laws and social expectations. Is it a book about the history of Wahabi extremism in Saudia? Then write it as a history and don’t try to squeeze it in as background in artificial-sounding conversations.

The main problem I found with this book is its lack of focus. There is so much potential here for a riveting memoir or a fascinating analysis. Ahmed sold herself short by taking the easy way out.

This book will be particularly interesting to people with little or no knowledge of Islam, people who don’t know many Muslims. Think of it as a long, chatty letter from the friend of a friend and you won’t be as disappointed as I was.

Not a bad book, just not as good as it might have been.

Visit my Goodreads page.

Pontius Pilate by Ann Wroe

Pontius PilatePontius Pilate by Ann Wroe

My rating: 5 of 5 stars

Saint Pontius Pilate? Ever since I learned that Pilate is venerated as a saint in the Ethiopian Orthodox Church, the figure of Pilate has intrigued me. On the one hand, bad man! Bad, bad man! On the other – wait a minute. Wasn’t he a key figure in the working out of our salvation? After all, he sent Jesus to the cross, where in one explosive moment zenith became nadir became zenith, where the suffering and exhausted “it is finished” became words of triumph.

So it was with great curiosity and excitement that I approached Ann Wroe’s Pontius Pilate. I was not disappointed.

Painstakingly researched and brilliantly imagined, Pontius Pilate combines everything that is best in historiography and historical fiction. Wroe presents several Pilates, each portrait exquisitely drawn and consistent with the research… and each portrait amazingly different from the others.

I guess I’d classify this book as speculative history. It is history through a prism, rather than a microscope.

I reread Pontius Pilate every year at Lent. It has yet to disappoint me or seem old and tired.

Highly recommended to anyone looking for an intelligent, fluid read that will invite you into a world only superficially similar to our own.

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I’m not ready to die!

Hanging onI’ve written a few posts about acceptance. I sure hope I wasn’t too smug because warmed-up words are not a very tasty meal.

It hit me suddenly today – I’ll be fifty-eight in two days. Will I live to see my next birthday? There is a good chance that I will not. The odds that I’ll reach the age of sixty are minuscule.

I’m crying while I write this. I’m not ready to die yet. I wrote about it in my recent post Saying Goodbye Without Leaving:

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.

[…]

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.

I want to write, don’t know what to write. The last couple of days, I’ve been sort of frantically active, within my limitations. This is a warning sign for me, a cue that I am avoiding difficult emotions. Wisely or unwisely, I looked within and saw…

I’m not sure what I saw. Not darkness – my fundamental happiness has not departed. Not despair – my God will not desert me. Not loneliness – I am fortunate in being surrounded by loving friends. So what is it?

Regrets? No, the only thing I regret in life is an unhealed relationship with a family member. I know that I’ve done all I can in that regard, so I quietly leave it in the hands of my relative and God. As I wrote a couple of weeks ago in Bucket List, I’ve had a good life.

I’m beginning to ask myself how much of this sadness is a control issue. I am a controlling person. I pay attention to detail and like to have my hand on everything going. As I get closer to death, my body compels me to start letting go of more and more. For example, my home isn’t as clean as I’d like (even though the Young Man Who Helps does very good work). I used to be very house proud; it’s hard to let go of this.

My house is just a symbol, of course. It’s not the grubby back door handle that is bothering me. It’s the letting go, letting go, the continuous letting go of life.

I’m not ready yet. How do you get ready to die when life is so good?

Christmas 2012

It is Christmas Eve in the Holy Land. I don’t often speak explicitly about my faith, but it’s no secret that I am a devoutly believing Christian. While the exact date is open to debate, Jesus was born – amazing event! – just about an hour’s walk from where I’m sitting.

Here is a modern take by the “Mediaeval Baebes” on a traditional Latin hymn, Gaudete!

Refrain:
Gaudete! gaudete! Christus est natus ex Maria Virgine. Gaudete!
(Rejoice! rejoice! Christ is born of the Virgin Mary! Rejoice!)
 
1. Tempus adest gratiæ hoc quod optabamus,
Carmina lætitiæ devote reddamus.
(Now is the time of grace for which we have been hoping,
Let us faithfully return songs of joy.)
 
2. Deus homo factus est natura mirante,
Mundus renovatus est a Christo regnante.
(God is become man, nature marvels,
The world is renewed by the reigning Christ.)
 
3. Ezechielis porta clausa pertransitur,
Unde lux est orta salus invenitur.
(Ezechiel’s closed gate has been breeched,
Where light is found, salvation is discovered.)
 
4. Ergo nostra contio psallat iam in lustro;
Benedicat Domino: salus Regi nostro.
(So let our gathering now sing brightly;
Praise the Lord, salute our King.)
 

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.

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.

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!

More scans (Update 2)

CT scannerAfter speaking with my oncologist, my GP called me back this evening. The onco asked for more tests: CT scans of my chest, abdomen and pelvis. The referrals were faxed to me this evening – they’re marked “urgent”. The oncologist said that after the CTs are read she may ask for a biopsy (I suppose of the finding at the sternoclavicular joint) and then they will discuss the skull mets.

So. Okay then.

I didn’t think I was having any particular problem with going for the scans; it’s a pretty routine procedure at this stage of the proceedings, after all. I went about making a nice dinner (pasta with button mushrooms in a peppery cream sauce and a tomato-fresh basil salad). I carried the plate from the kitchen out to the table and… the whole plate of food slid on to the floor. Then I noticed my hand was shaking.

This was upsetting in all kinds of ways! I hate to waste food, and I’m kind of a nut about a clean house, and I hate it when my emotions control me instead of the other way around. Harrumph. I cleaned up the floor and threw away all that perfectly good food because I washed the floor today and there was probably still detergent residue on it. I washed the floor again because I clean when I’m anxious.

What’s with this anxiety, anyway? The tests are expected and routine in my situation. The results will not change the fact that I have Stage IV breast cancer. Yet, I suppose I’m anxious about the possible outcomes, that is, that the cancer may have spread to lung or liver as well as bone, or to my ribs or pelvis. It’s still Stage IV, though; there aren’t any more stages than that. I don’t know what I’m anxious about. I just need to accept that I am and move on.

Treatment at this point is about prolonging my life. Once all the data is in, I will make a decision about that. Do I want to prolong my life with cancer treatment? How much quality of life am I willing to sacrifice to that end? There is also the issue that it is much easier to say “no thank you” and not start treatment than to say “enough” and stop it. Easier in terms of the Israeli medical establishment, and perhaps easier on the people I love and who love me.

There is also a moral issue. My life does not belong to me; it belongs to God. That raises another question. When I stand before my God, will he be disappointed in the choices I’ve made? At what point can I morally choose to prolong my life no more? If I suffer, is there redemptive value in my suffering? (Yes, there is.) Do I have the right to curtail that before time? How will I know?

Big questions, all. Too big for me right now. I go back to the psalm that I love so much, that I quoted earlier this month, this time as a goal to move towards and not as a description of a state attained.

For right now, I’ll just keep breathing and turn off the speculation machine in my head.