Wednesday, November 30, 2011

A New Blog

My friend Karen has gotten much in the way of spiritual sustenance from Richard Rohr, who has just started a blog.  

Karen's 12-year-old daughter Katie died of cancer four-plus years ago, and since then Karen has been a whirlwind of activity, raising money for pediatric cancer research, working on educational projects designed to enhance family-centered medical care, and chairing Katie's Comforters Guild, which provides quilts to hospitalized children (in case you need a destination for your holiday donation dollars). 

I'm finding that many of my "bereaved mom" (oh, now there's a great circle in which to be) friends are writing and speaking, very quietly, about the tremendous challenge of the second, third, fourth, fifth holiday season now upon us.  Some things get easier, and some more difficult.  

So I just thought I'd provide these links.

Tuesday, November 29, 2011

Hello God; It's Me, Gannet



When I was sixteen and in the 11th grade, I did not believe in God.  Five years of VERY religious Catholic and Protestant boarding schools,  and the result was that I considered religion to be a ludicrous invention of a desperate humanity.  (I have a college student who sees things in the same way.  He has no idea how much consideration I give to him.)

Nevertheless, I do recall one winter night in western Massachusetts, when I stood in the snow on a hillside under a sky filled with stars and asked, "God, who are you and what are you doing?"

In some ways, I am still that girl.  Without the long, long brown hair.

**********

This ~ breast cancer:  surgeries and all the other unpleasantness it entails, months and then the rest of my life being attuned to the possibility of disaster  ~ is turning out to be, in terms of my experience of God, nothing at all like that of three years ago, after Josh died.  

I don't understand what happened three years ago, and went on for months and months  ~ in the expletive deleted middle of seminary ~ but I do see now that it was a dramatic and deep break from anything that I might have thought or imagined about God. Even in my most cynical 16-year-oldness. It was a place so hugely empty, so very dark, so completely lonely, so desperately sad ~ no wonder no one seemed to understand what I was talking about.  And no wonder I was so agitated and angered by some of the nonsensically pious words people tossed my way. Parallel experiences that intersected nowhere.

Now, looking back, I believe that I got to know God a little better.  At least one small, and very silent, dimension of God.  I have a deep sense of God's presence and labor in places where it seems evident that God is not.

I also think that there was some considerable grace there in that I survived to tell the story.  Literally.

**********
A situation is brewing in my little church.  The timing is most unfortunate: Advent, and a pastor learning to navigate post-cancer treatment. Aren't those enough? I am supposed to be the leader, the wisdom figure to whom people will turn.  I have no idea whether they will do that or not.  I am surprisingly calm.  Anesthesia brain or a genuine confidence in God at work?

Who are you and what are you doing?

**********

Humor persists.  I have an appointment with my plastic surgeon this afternoon.  That phrase, "my plastic surgeon" ~ it would completely crack me up if I weren't so exhausted.  (He's very cute, and smart, and funny.  I hope he is as skilled as his reputation indicates).  I am going to have a plastic surgeon in my entourage for a long time.  

Life is bizarre.

**********

Image: There are some kids at church who want to know what God looks like.  The Helix Nebula, I think.


Sunday, November 27, 2011

Nine Days Post-Surgery

I don't look like this today, but  I did last night.

Positives: 

I went out twice yesterday.  The Lovely Daughter took me shopping for a couple of things and later, The Quiet Husband dropped me off at church.  It takes me a l-o-n-g time to get going in the morning, so I figured that my only hope for an Advent I service was a Catholic Vigil Mass.  It was beautiful, a few new liturgy (effective last night) bloopers notwithstanding.

Pain mostly gone; no more meds since a couple of days ago.   The evil drain has been out since last Wednesday.

Family: They are GREAT.  It must be like living with a blob in the living room, but they put up with me most generously.

Casualties:  

One iron.  I don't know what I was thinking, but I forgot, the first couple of days, that my arm movement was limited.  Small crash. 

Focus.  I can't concentrate enough to read for more than a few paragraphs, and I can't follow a phone conversation; I need the visual cues of face-to-face contact.  I assume this is part of the post-anesthesia fog, but it's quite disconcerting.  The headache (four days) and vision problems (a week) have resolved themselves, so presumably this will as well.

Energy.  I just read something about post-surgery fatigue and it was pretty scary.  I barely move (yesterday was a huge exception), and I am completely exhausted. 

Emotional Life:  Wow, is that on a roller coaster.  Use your imagination.



Saturday, November 26, 2011

There once was a man . . . (Ignatius)

There once was a man named Inigo.  A poorly-educated youngest of many children who turned to a military career as a likely source of fortune and fame.  A man inclined to the pursuit of women and wine.  A headstrong and impulsive leader who was badly injured after a most unfortunate decision to charge forward where retreat would have been warranted.

And THIS is one of my heroes in faith?  A failed Basque soldier of the early 16th century?

Why not Martin Luther, ardently nailing his 95 Theses to the door?  I do, after all, believe in the possibility and hope of always reforming and always being reformed. Why not John Calvin, with lawyerly and scholarly precision writing and re-writing his Institues? I am a lawyer, and a little bit of a scholar, with two advanced degrees in hand.  Why a man at all, for that matter?  Why not St. Brigid, or Julian of Norwich, both of whom brought healing and learning to others in difficult times?

Oh, each one of them has his or her place.  But Ignatius, as he came to call himself . . .

Ignatius spent those long months of bedridden recovery learning to pray.  He learned to meld two stories, that of the Biblical narrative and that of each individual's, into a form of prayer that emphasizes human experience and emotion, that recognizes God laboring in all things that we encounter, that seeks the companionship of Jesus Christ, and that embraces the Spirit's activity in all that we do, and say, and ponder, and hope.

It's not surprising, I think, that as I recover from this wretched surgery and anticipate months more of treatment, I would re-connect with Ignatius.

After he got out of bed, Ignatius had some rather dramatic experiences and did a few weird things.  He made some mistakes, and he returned to school to remedy his academic weaknesses. He formed a small band of followers during his studies in Paris, and the Jesuit order was born.  He transferred his own passion and desire for mission and travel to his men, sending them around the world (and yes, we studied Jesuit missions extensively in my Presbyterian  seminary!) while accepting that his own role called for him to remain in Rome, drafting documents, organizing Jesuit activities, and writing ~ more letters than anyone else in the 16th century.

And how did Ignatius become a hero of mine?  Because one person ~ one elderly, wise, and wickedly funny Jesuit ~ took the time to share his deep love of his spirituality with me.  The Spiritual Exercises of St. Ignatius are, at their very best, a matter of oral tradition, handed from one person to another.  I am often awed by the fact that they made their way from Ignatius to his first followers, to others across the oceans and down the centuries, to a Jesuit who became a key figure in their renewal in recent decades and who gave them to me, and now are passed from me to others.

One-on-one.  There are other Jesuit companions in my life now, and in them I have seen the same generosity, the same intense desire and commitment to share in the prayer and lives of others.  The same willingness to recognize the presence of Jesus in the lives of others.  The same gift of the spirituality of contemplation in action that made it possible for me to move forward, with much help, after the death of my son.

And so, as I emerge from the haze in which I've spent the past week, that's who and what I'm thinking about.  I'm disappointed that I won't be spending the first Sunday of Advent with my congregation,  but perhaps this little respite is exactly what is called for, a transition from the self-absorption of illness back to openness to others.

I would rather be spending my retreat time in a state of good health at Wernersville than in recovery in on the recliner in the living room ~ but then, Ignatius would have preferred India to Rome.

Image: Ignatius the Pilgrim at Guelph (ONT) Retreat Center

Friday, November 25, 2011

Thanksgiving Melancholy

Just so you know, an explicit post follows.  I am actually feeling quite neutral today (Friday, one week post-surgery), but one of aspect of having become a regular writer, even in blog form, is that one feels compelled to leave notes lying around.  A record of sorts.


Herewith, from last night:

Late Thursday afternoon, and I pick up the camera to take some pictures of the Thanksgiving table.

First, though, I scroll back to the images I took a week ago.  Late at night, after  everyone else was asleep, I went into the bathroom and took some of myself.

I have looked at thousands of images of the female breast over the past two months.  Most of them have been medical diagrams, demonstrating the complexity of breast tissue and various methods of excising and replacing it.

I never gave much thought to the magnificent detail of my anatomy.  My  breasts were 58 years old and they spent those years doing pretty much what a woman's breasts do.  They caused me some consternation in my youth, were a source of pleasure later on, and easily nourished three children, including my twin boys.  They looked ordinary and, as fashions became more revealing, they demanded some effort to cover with a  degree of modesty.

 Now one is badly bruised, a spray of black, purple and yellow, and the other is ~ the same color scheme, but not  geography I want to describe.   I can already disguise the reality, and I am told that by next summer I will be able to wear a t-shirt with no one the wiser. 

One of my friends emailed me yesterday to say that the holidays have increasingly become days on which we mark the  losses.   Hers have been staggering, and so have mine.  And while I am exceedingly grateful for the family that shelters me and the friends who support me, for my work and for my usual energy and for the health I was able to take for granted until recently, I miss my boy with a missing so wide and deep that there are moments on these days of celebration, moments through which I can barely breathe.

And so tonight, before I take the photos of the table, I look at the ones of myself.  Those ordinary, well-used, seldom visible breasts. 

They were very beautiful.

Thursday, November 24, 2011

Thanksgiving Prayer



I like this one, by James Martin, S.J., from the Huff Post Thanksgiving Bloggers:

Dear God,

Sometimes my life is so rushed that
I have a hard time remembering to be grateful.
And even when I do remember I don't pause to say thanks.

So help me to remember all the things for which I'm thankful.

For my friends, who make me laugh and keep me laughing at myself.
For my family, who you chose to be with me -- sometimes for reasons I can't quite see!
For my religious community, which invites me to connect with you in new ways.
For my job, which helps me put food on the table and clothes on my back.

And if I have no family or friends, or don't have a job, let me be still be grateful.

For my country, which gives me the freedom to be the person I hope to become.
For my health, which helps me to praise you, and enables me to help others in need.
For the world itself, which you crown with your beauty.
And if I'm still not feeling grateful, increase my gratitude for little things.
For seeing a tree slowly turn red in the fall.
For the surprising cold of the first snowflake on my face.
For hearing a child's laughter on a sad day.
For seeing a beautiful sunset after a tough week.

And if I'm still not grateful,
or am too rushed to savor all you have given me,
Please increase my openness to gratitude.
Magnify my ability to appreciate life.
And help me grow in thankfulness.
For that alone I would thank you,
Dear God.

Image: Sandhill Cranes at Jesper-Pulaski NWR, Thanksgiving 2005

Wednesday, November 23, 2011

Fear and Courage

I woke up awhile ago to the thought that I should delete all posts from the last few days ~ all the posts which show me at my worst and are little more than a self-indulgent dip here and there into the fears and sadnesses that accompany breast cancer and its treatment.

I've decided to leave them up, for the time being anyway, as a reminder to me, even if to no one else, of how easy it is to slide into a state of fearfulness and to let anxiety about myself and my well-being control my decision-making and, ultimately, define who I am.

One of the things about Joel Osteen and his ilk that sends me into a paroxysm of sarcasm is his  constant emphasis on "I" ~ that "I" who is, indeed, filled with fear and pain, who feels alone and terrified and unheard ~ as the solution to my own anxiety, as if my own anxiety were, indeed, the problem.

The reality is that my anxiety is nothing more than the symptom of the real challenge, that challenge being the ease with which illness and loss and all that accompanies them separate me from the confidence that a loving God is laboring on my behalf in all circumstances.

Last night my daughter unwittingly offered me a clue that set me on a new path in unraveling this mystery of challenge and response.  Hearing the story of my early-morning pre-surgery procedure for the first time, she shook her head and said, "I don't understand why the doctors don't listen to you.  You really did everything that you could in advance to explain that your experience of pain is apparently an unusual one.  It sounds like the surgeon nodded and then went on automatic pilot, and then was surprised at the outcome.  It might have been better for her to have said, 'This doesn't usually hurt but, given your description of past procedures, I can't guarantee that.' "

Yes, that kind of candor might have made things a bit easier.  (Also: If she had not insisted that my friend leave.  Note to self: Leave no stone unturned in your preparation.)

But perhaps the important question has little to do with medical procedures or with my response to them.  Perhaps the real question is the one that my professor asked over and over again in my ordination sermon: What is Jesus doing?  Or, as I might put it, in perhaps a less Reformed and more Ignatian manner: into what is God inviting me?

Let's start with reality: I are not young, or strong, or brave, or beautiful, or pain-free, and no insistence otherwise will make me so. (No, I'm not fishing for compliments.  I'm trying to think this through.) But then, if this is not about me, those cover-of-People-Magazine attributes matter little.  What matters is:  What is God doing?
 
My knee-jerk reaction is to say: "Ya got me."

But seriously.  Last summer, Jesuit Father Jim Martin said on The Colbert Report that God's job is to sustain the universe.  If that's the case, and if we believe that what God is doing is, in fact, God's job ~ sustaining the universe ~ then what questions should we be asking, what invitation should we be looking for, during these times when it does, indeed, seem that God is dropping and losing things all over the place?


Tuesday, November 22, 2011

Tee-hee

Just turned on the tv: Joel Osteen!

May I quote:

"When you look in the mirror in the morning, just say:

I am beautiful!
I am strong!
I am young!
I am healthy!"

I just hope he sends Victoria out real quick.

Dream


I am siting in my pajamas in the dining room in our center hall colonial when the front door swings open and a friend peers in and calls my name.  Startled and angry, I pull a blanket around myself and yell at her to leave.

I dash (something I cannot do!) up two flights of stairs as she wails, "But you were so angry that we stopped coming around after Josh died!"  "That was when I looked like me!" I yell backward.

I reach the landing on third floor between Josh's and Matt's rooms, where I encounter another young man, a complete stranger.

"And who on earth are you?" I demand. 

He gives me a name and tells me that Matt said  that he could live here.

"In my house? Without my knowledge or permission?" I am really angry now.

**********

Drug-induced dreams?  Or a revelation of reality?

Other people? Right response, wrong time.

Me? Scared and inadequate to the task.  

Cancer? The stranger who had settled in before I knew he had arrived.

Death? Outside Josh's door.

**********

I've quit the narcotics.

**********

Editorial comments:  This, remember, is a dream.  My friends are amazing.  All kinds of friends in all kinds of ways.  But one of the things uppermost in my mind these days is the overall difference in experience ~ for me ~ between losing a child and losing a breast. 

Spirituality and Healing ~ 2

We don't all have the same spiritual needs in a hospital setting.

I have parishoners who have related with delight stories of doctors who pray with them.

I know a lot of other folks, religious and otherwise, who would consider a doctor's or nurse's offer to pray with them as a major step beyond appropriate boundaries.

And the reality is that few of us know much about the religious beliefs and practices of others ~ even of others who self-identify as we do ~ and and if we do seek to offer spiritual friendship to others, we may find ourselves offering well-intended prayers that baffle at best and alienate and anger at worst.

This morning, I'm thinking about those moments in my own experience, this fall and in years previous, in which fragile doorways opened briefly, and closed silently, before any light was captured.  

I have stories, not answers.

This is one of them:

Somewhere in the registration process for my September procedure, I was asked a fill-in-the-blank question: Religious preference?  

Official answer: Presbyterian.  

Real answer? A wondrous thing is about to happen to me.  I'm about to be ordained to ministry.  After years of prayer and study and preparation, I'm about to raise a plate of bread and a cup and offer them to others as the body and blood of Jesus.  

But here's the thing:  in the middle of all that prayer and study and preparation, God departed.  Vanished.  I had to learn to see and hear all over again, in the dark and in absolute silence, before I could dream about that bread and cup again.  

My real religion is Psalm 139, except for when it's Psalm 88. And so I am not a little apprehensive about what lies ahead. In a spiritual sense.  A friend told me that after her 28-year-old husband died and then her kitchen burned down, another friend said to her "God drinks."  She told me this when I called to tell her that I had been approved for ordination  and diagnosed with breast cancer in the same week.  Yet another friend for whom cancer has been part of life sent me several books of poetry by a Benedictine monk as ordination gifts.  One of them is entitled God Drops and Loses Things.  

I don't know what the hospital registration people think that the religious preference question is about; probably they imagine that it is simply about what clergy to call if things don't work out.  I think it's a bigger question than that. I for instance, want to discuss the drinking and dropping and losing. 

But I answered: Presbyterian.

Monday, November 21, 2011

Spirituality and Healing

I don't think that there are any breast cancer healing stories in the Bible.

No explicit ones in the Gospels, anyway.  There is the woman who has been bleeding for years; there are women reputed to have engaged in various sexual misadventures.  The woman "caught in" ("framed for"?) adultery; the woman at the well and her six partners.  That's  about what we get from the four evangelists where women's bodies are concerned 

There is no woman who suffers from disease in that most intriguing area of human anatomy, the one designed for beauty, for intimate pleasure, and for the nourishment of children.  The one that reflects so completely the multi-prismatic wholeness of the human life, both body and spirit.

**********

Last week, the local paper ran a multi-part series on cardiac care at The Cleveland Clinic.  Profiles of doctors and patients, descriptions of procedures.

Under normal circumstances, I would have absorbed every word with great interest.  I did my summer chaplaincy internship there, I observed a heart surgery there, and I spent a lot of time with patients on the units which the articles describe.

Given my actual circumstances, however, I quickly skimmed the pages most days. I could have missed something major.  I hope that I did.  Because what I did not see was any reference at all to the spiritual aspect of heart disease.  No mention of chaplains or of families' own pastors, priests, rabbis, or imams.  No discussion of the spiritual side of health.  No one claiming victory for God or decrying God's absence.  No one praying.

My husband rolled his eyes.  "The series  was an advertisement for the Clinic surgeons," he said. "I don't think that's what the writers thought they were doing," I responded. "But they did leave something out."

**********

I've had two surgeries at University Hospitals in the past several weeks.  I did not encounter a hospital chaplain either time. The only out-loud praying was done by my friend (and Presby pastor) Maggie in the pre-op area on Friday morning.  As the OR team made its final preparations and told me that the anesthesia was about to take effect (I forgo the pre-op meds, so I was wide awake and alert), my last coherent thought was that the room and its activities were something of a shrine and an offering to science.  You would never guess that our lives might be in the hands of someone more loving, more creative, and more powerful than our physicians.

**********

Two years ago, after Christmas, my first spiritual director sent me the outline of a talk he had given on the Holy Spirit's overshadowing of Mary, on the Spirit's gift to her of the freedom within which she was enabled to recognize and respond to God's accompanying presence.

Not a breast cancer healing story.  But maybe a breast and heart strengthening story?

That's what I was imagining and praying with right before my surgery. And I was supported, magnificently, by the picture in my mind's eye of the dozens of  candles lit and prayers being spoken for me literally across this entire country.  I loved thinking about the terrain of Idaho, the dark waters of Lake Superior, the waves of both oceans, the interiors of chapels and churches and synagogues, the morning masses and evening Shabbat services.  I loved imaging the faces of my friends, each taking a moment to support my encounter with the Holy.

**********

I  don't want to be the least bit dismissive of my medical care.  Maggie reminded us in her pre-surgery prayer of the tremendous learning and skill represented by that hospital, and it's important to remember that if God is in all things, as Ignatius teaches us, then God is in all things medical, whether we like them or not.

But I do think that the most important proceedings of the day had no insurance codes ascribed to them.  No co-pays, no deductibles, no consent forms, no picture IDs ~ and the only preferred provider almost completely unrecognized.




Recovery 101

Among the many detestable things with reference to being post-op is the constant focus on one's personal physical well-being.   It is SO BORING, which explains why I do not host a cable tv show on food or fitness.

Well, ok, so there might be other reasons for the latter.

I am all about pain control today.  I thought that I was in pretty good shape last night, so I cut back on the meds and started looking forward to a shower.

Really stupid idea, which left me looking at my phone every minute for the last  hour this morning until I could load up.  And load up I did!

And then I slept soundly for three solid hours.

And now I am too tired for that desperately longed-for shower.

The good news is that I have recovered almost complete movement of my left arm.  It hurts, but it moves.  This is A Very Big Deal!

I suppose everything will work together eventually.

See how boring this is?  But the only other thing on which I have to report is the drama of narcotic-induced dreams, which I forget as soon as I wake up.  And also, I suppose (see Caring Bridge), my late-night discovery of the Barbie Channel.  Who knew?

Sunday, November 20, 2011

Still Alive -2

My friend W, Director of Nursing Operations for the Cancer Center and Mother of The Lovely Daughter's apartment-mate, stopped by to see me yesterday morning.  I told her the good, bad, and ugly, as she is actually in a position to pass along praise, and to effect change where no praise is due.

She and her older daughter, a brand-new peds oncology nurse, came over to the house last night to help me with a procedure I cannot manage on my own.  ("See where all that Montessori education got us?" I said.)

And they both laughed at my rx ("This is a peds dosage!") and told me to double it and shorten the time between dosages.  As a result, I actually got some sleep last night, and made some physical progress.

Things I Can Now Do: Get up from a chair by myself.  And sit back down.


Image: Goal.

Saturday, November 19, 2011

Still Alive - 1

Relentless pain - it's been about 30 hours since I woke up from surgery.

To my surprise, RevGal Maggie showed up in town last night and offered to accompany us this am.  Since she has faced similar challenges, I said yes.

The first pre-surgery procedure was excruciating.  Probably exacerbated by the doctor refusing to let Maggie stay with me.  I collapsed sobbing into her arms as soon as the door was open; the doctor merely commented that that degree of pain was highly unusual.

Maggie and The Quiet Husband and our kids stayed with me till I was wheeled off to the OR; good thing, as what little faith I had that things might go well had been completely shattered.

Lotta screaming and crying last night in connection with another procedure.  Really scared that nurse!

Anesthesia headache.  I can go to the bathroom on my own, but that's about it.  I really haven't had the energy to consider the emotional ramifications of what's happened; the physical stuff is taking everything I've got. 

My son's assessment: Mom, your resistance to narcotics is becoming legendary.


Wednesday, November 16, 2011

What I'm Gonna Do . . .

with the two days I have left with an intact body . . .

Complete the preparation for and teach an introductory class on Chinese religions ~

Make phone calls to substitute for pastoral vists ~

Finish all those thank you notes ~

Read some of what people have been recommending to me ~

Try to hold it together (I am pretty much failing Holding It Together 101) ~

and

Pray.

See y'all on the other side.

Tuesday, November 15, 2011

SUICIDE



I am writing the title of this post in all caps for a reason, which I hope is about to become apparent.

All bold and red highlighting in this post is my own:

Yesterday's anonymous commenter supplied this link to a very short article in Forbes, which quoted a previous article in part as follows:

Roughly 35,000 Americans commit suicide each year–more than die from prostate cancer or Parkinson’s disease. Another 1.1 million people make attempts, while 8 million have suicidal thoughts. Among those aged 15 to 25 it is the third leading cause of death. Yet researchers know astonishingly little about how to treat people who contemplate killing themselves. The subject has been so roundly ignored that the 900-page bible of psychiatry, the Diagnostic and Statistical Manual of Mental Disorders IV, offers no advice for doctors on how to assess suicide risk.
Fear, logistics, low research funding and more risk than reward for drug companies all conspire to make suicide the neglected disease. The National Institutes of Health is spending a paltry $40 million in 2010 studying suicide, versus $3.1 billion for research on aids, which kills half the number of Americans. (Another government agency spends $48 million on hotlines and prevention.) Therapists often don’t want to treat suicidal patients, and university clinical study review boards are skittish about studying them, says the University of Washington’s Linehan.
2010 NCI spending on breast cancer research alone was $631 million, according to this site.

Estimated breast cancer deaths (all ages) in 2009 was 49,170, according to this report.

Excuse me for a moment while I go and throw up.

A few days ago, Evelyn Lauder, a major breast cancer activist, died of ovarian cancer. I believe that she was in her mid-70s.  Lauder?  Think Estee Lauder cosmetics.  Daughter-in-law of Estee.

I am not a New York socialite and cosmetics tycoon. 

I am the pastor of Tiny Church in Tiny Town, a town so tiny almost no one has heard of it.

I'm guessing that Mrs. Lauder had her some pretty nice digs in New York City, and that she knew "all the right people."

We just painted our living room after 27 years of living here, and I know my friends and and congregants. 

I absolutely do not have an activist personality.  I'm a spiritual director, for heaven's sake (literally).  I like quiet conversation and prayer with one other person more than just about anything else in the world.  But I do have a few other skills in my pocket, mostly research and communication skills.  There is that lawyer side of me, lying latent.

And I am sensing a swell of outrage welling up inside me. Perhaps that is how these things get started.

My approach to my own health care could be described as casual at best.  And yet (much as I hate it), I am being treated for a cancer at a stage so early that I can barely believe that I have to endure major surgery and its consequences to address it.  Were this a generation ago, the cancer would not have been detected for years (if at all, which is another whole issue with DCIS, some of which turns into Something and some of which does not, but no one yet knows how to predict which is which, so we all get treated, and that's a whole other and disconcerting story). By the time it was discovered, it most likely would have been invasive and resulted in even more disfiguring and disabling surgery than  what I am about to undergo. Two generations ago, that surgery would have been done in the dark -- no one could predict who would survive and who would not, because testing and treatment for metastatic breast cancer was in its infancy.

All that has changed because of all that pink money and all those activists, women and men alike, who said: No more BS about this.

Suicide and depression?  I know something about those matters now.  And one of the things I know is that we don't routinely screen people for depression.  We don't plaster pink-ness, or some other color, all over the place with posters and brochures telling us risk factors and what to look for, in ourselves and in those we love.  I have posted very little about my son because I try to protect the privacy of my family in my online life, but I will say this (and perhaps someday, much more):  Like many suicide survivors, I look in retrospect at the evidence, including journals I did not have access to until after his death, and it all screams: Depression!  High risk of suicide!  And we had no idea at all.

So.  This is not the week.  I have other things to do this week, things that are possible because the massive Komen and ACS and NCI machines and money have been at work, with the result that there are TWO state-of-the-art breast cancer teams and facilities down the road.  

But when this week is over, I am going to join every damn suicide prevention organization out there and I am going to volunteer everything that I have to offer and if I have to make something up from scratch I will because ~ my son, with his brilliant and creative mind, with one of the finest educations in the world, living in one of the greatest cities of the world, with a great job that provided him with excellent medical insurance, should have been able to put all that together to get for his illness the excellent care and support that is so easily available to me.

I have been writing for three years about how my grief and sadness have been exacerbated by the many times people have avoided the topic of my son's death, and by how much I have been helped by those who were not afraid of it.  But ~ and this is true, pathetic as it may sound ~ it took breast cancer and the universal willingness of people to get down and dirty with me for me in this new challenge for me to understand how much of a taboo suicide still is.

BS that MUST STOP.



Image: A Joyous Josh, Sleeping Bear Dunes, 2001.  

Sunday, November 13, 2011

What a Journey This Life Is!

I am actually feeling much graced tonight.

Ignatian stuff ~ In the "everything is connected" category: I emailed my summer retreat director and asked him how his best friend, who died last summer, had lived fully in the context of all the demands that a serious illness forces upon you.  He responded in part that his friend was a person of deep prayer who focused upon living and serving, and not upon his illness.  He did not seem to think that that approach is beyond me.

Then another Jesuit posted a homily today in which he talks about using all that God gives us. I posted a comment to the effect that one of the messages in my Ignatian retreat of six years ago was  that I should "use yourself up. Make use of everything you've been given until you've exhausted it all." 

My regular life ~ I have said more than once that it is quite some privilege, to have to contend with breast cancer in the context of having just been ordained into ministry.  In part, I really don't have  a lot of time for moping around ~ an activity at which I am sure I could become quite expert, given the chance.   But more importantly, I have a seemingly endless stream of opportunities in which to provide care and hope to other people, who seem to welcome the presence of someone who has needs of her own.  I suppose that there is no possible way, given the circumstances, that I could come across as overly self-confident, which may be a great blessing.

Suicide ~ I have noticed something really interesting over the past two months.  People TALK about breast cancer.  People talk about it freely and openly, ways in which people DON'T talk about suicide. 

The Lovely Daughter was astonished, at first.  "People don't usually even say the word 'breast!' " she exclaimed.  "And yet you keep meeting women who were strangers only moments earlier, and next thing you know, they're pulling up their shirts to show you their reconstructed breasts!"  

But I have noticed quite a difference between conversations about breast cancer, even where older and more reticent women are involved, and conversations about suicide, which tend to stop even the most voluble folks in their tracks.

And so I've been thinking about that quite a bit.  I haven't seen myself as a suicide prevention activist at all.  But now I wonder.  There are thousands ~ millions ~ of people willing to talk openly about breast cancer.  There are very few of us who have been forced to become fearless in our discussions of suicide.  And we all know that it is by bringing evil into the light that you destroy it.

In my personal life, the evil of depression has taken a lot more territory than that of cancer.  Maybe, when this acute phase is over, I am being called to turn some of my attention to that most insidious of killers, clinical depression.

It would be odd, wouldn't it, if having breast cancer turned me into a noisy and irritating voice aimed at the eradication of suicide?

Saturday, November 12, 2011

Intergration, Not Military Mobilization

One ~ 

I definitely spoke too soon yesterday.  By evening I was in a state of complete disarray, and my most wonderful family sat with me at the kitchen table for hours, reviewing all possible options and consequences and associated feelings.

Two things in particular came up.  The Lovely Daughter asked me point-blank whether I trust my doctors, and I responded immediately with an emphatic "NO."

This has nothing whatever to do with the doctors. They are outstanding physicians at a university medical center; they are progressive, up-to-date, articulate, compassionate, and skilled educators.  

This has to do with events in my childhood. 

When I was seven and lying in a hospital bed with major injuries and begging to see my mother, I was told that she was asleep down the hall.  The truth, that she was dead, came out pretty quickly, but the impact of that outright lie on my subsequent management of my health care has been profound.  In both good and bad ways.  I look at a medical building and I am filled with suspicion and distrust.  Those feelings, along with my natural inclination to leave no stone unturned, have gotten me, and my children, excellent medical care and a lot of information and support.  They are also, in these weeks in which major decisions are required and little time is available, something of an obstruction.

Two ~

The second thing that came up for me, and I'm not sure that we even got to it in our hours of conversation last night, is that it is sinking in that this process that has already gone on for two months will not be complete until at least three, and quite possibly six, more months have passed.  You don 't just pop an implant in.  For me, the person whose blood pressure rises into the stratosphere at the sight of a hospital, there will be weekly visits and one or two or more surgeries after the big one before everything is complete.  All of which means that this is not just a burst of a crisis that will subside.  This is months of living my regular life with the need to plan and show up for medical care as a new constant.

And then the shadow of cancer will follow me all the days of my life.  As does the shadow of suicide.

Three ~

I know that this part will be controversial, and I welcome all comments and insights.  But here's where I am at the moment:  I hate the military terminology that we use with respect to disease and loss.  The fight battle victory defeat wage war terminology.  (All of those, I might add, are words that I use, because God forbid that I should ever view consistency as a virtue.)

But I just don't find it all that helpful to view my body, or my family, as a war zone.  I am going to have to live with the realities of cancer, just as we have to live with the realities of Josh's death.   So the word that I am beginning to play around with is the word integration.

I have no idea what that means, in a practical or physical or spiritual or intellectual sense.  I do know that, while there have definitely been times in the past few years in which I have felt as if I were fighting to survive, I have been better off, whatever that means, which I have been able to meld the complexity of the whole in some kind of metaphorical architecture that makes room for both the horrors and the goodness of Josh's death and, more importantly, life.

Integrate, it turns out, comes from Latin for to make whole.



Friday, November 11, 2011

Feelin' Upbeat Today

This is probably a bit premature, but my outlook today is pretty positive.

I think I have done about as much research and preparation and dealing with my, uh, stuff, as a person could.  My father called today and asked if I were at peace with my decision, and I was able to say, with complete equanimity, that mine is not a set of options likely to produce peace.  In other words, I'm not at peace ~ but why should I be?  That's not a requirement.

I'm glad that I didn't rush into surgery two months ago.  Even though I am doing exactly what the first surgeon originally recommended, I am doing it  in a knowledgeable and well prepared manner.  I know about options, I know statistics, I know what the procedures are (SO not appealing).  I have things to wear, I have a place to hang out, we have a new tv, and my work life is somewhat in order.  I could not have pulled all that off in less than two months. 

I have come to terms, sort of, with the reality that I can't predict anything about my recovery.  I've read some real horror stories and I've read some by women who came through all this fairly easily.  I can't choose, and I don't believe that optimism is the controlling factor here, but I'm ok with that.  Most of the time.

I have recovered my sense of perspective.  I want Josh to be here, I always want Josh to be here, and I can't believe that he isn't flying home from Chicago this week to be with me, where he belongs.  But that's no different from every other week.  And I do know that this ~ this is just a breast.  It is not a child.  

I am extremely clear about the difference.

This past week I ran into an acquaintance who has had cancer.  She's been fine for several years.  And while I know that she has other significant challenges in her life, I realized as we talked that: I am not a fragile person at all.  Her story?  Not mine.  I have my moments, and my days, when I am puddled all over the floor, but on the whole I am a pretty tough babe.  And I'm good with that.

Best of all: I am imagining the future.  You can travel all over the world with a fake boob.  You can preach and take photographs and do spiritual direction and hike and canoe.  And you still can't sing or cook if you never could.  So, basically: I will still be myself, just with some new and gory scars and some silicone inside.

This whole thing really and totally sucks.  But: OK ~ I will come out the other side and I will be fine.  

Although I will probably have even less patience with certain people and their idiotic remarks than I do now!



Thursday, November 10, 2011

Ask; Don't Instruct

As Jody says in the last set of comments, some moments jump out at us as examples of "the wisdom of silence and the comfort of just being there."

Oh, I hope I remember that.

When someone whom I know to be a person of faith (any faith) is in turmoil, I try to ask, "Does your faith help you?"  Or, "What has been your experience of God in this?"  Sometimes people are surprised ~ they expect me, the pastor, to TELL them how their faith helps them, or how they should be experiencing God.  And then, sometimes, they venture a quiet response along the lines of "Not always," or "Not so much."  And then they look even more surprised: Is it ok to acknowledge that?  Is lightning about to strike?

Of course, sometimes the opposite happens.  Sometimes a person preaches an entire sermon in response to one of those questions.  And that's ok, too.  It might not be my sermon, but it's that person's moment, not mine.

If I know, or guess, the person to be someone for whom what I would describe as religion is meaningless, I try to ask, "What helps you deal with this?" or "How are you approaching this in your mind or heart or spirit?"  

People have such powerful stories to tell!

But I guess you have to want to hear theirs more than you want to impose yours.

I can't say that I get an A+ in this endeavor.  Some days, I suppose, a D-.

But you really do have to know that sharing yours is a meaningless gesture, and sometimes one that inflicts damage, until you've heard theirs.

Wednesday, November 9, 2011

DON'T

Don't tell me not to be afraid.  My son has died and I am not afraid of much, but this week I am afraid of some things.  This week I am afraid of hospitals.  I am fine as a hospital visitor, as a chaplain, as an observer.  I am not squeamish, I have no sense of smell, and I am just generally not bothered when my own self is not the focus of medical care.  But when I am the focus ~ let's just say that I have childhood memories that have worn grooves into my soul, and I get to be afraid.

Don't tell me that they'll manage the pain.  I have never had adequate pain management, so I feel completely undermined when I think you are lying.  You probably aren't lying, at least not intentionally, but I am pretty sure that the reality is not going to be pain-free, or what hospital folks call "uncomfortable."  I'm pretty sure that it's going to be hell.  So let me have the truth of that.

Don't tell me that it's not all that big a deal.  It is, actually, in its own way.  Or not.  I can't tell.  It's more like re-living the events of three years ago than it is its own thing, and that's a very big deal.  

DON'T stand in a store and quote Bible verses in my face.  Just DON'T. DO. THAT.


Tuesday, November 8, 2011

This Week - Ordination and Cancer

1.  I am in trouble.  I had no idea about ordination gifts.  No expectation or anticipation whatever.  Apparently that was extremely dumb.  I have received such personal, thoughtful, creative presents ~ I am astonished.  And grateful.  And I thank so many of you, and I WILL do so, personally and for real  ~ but it will take a little while. And if  "a little while" is after surgery ~ well, so be it. 

This is nothing like after Josh died ~ when every thank-you note was an exercise in anguish, and I would have to take breaks that lasted for weeks. This time, I look at these wonderful gifts and I am filled with joy and gratitude.  But I'm still pretty slow.

2. This cancer thing?  It's tough, although not in ways you might expect.  I continue to struggle with the reality that it, too, is not Josh ~ and so where do I put it?  The other night, my husband said, "It IS breast cancer, you know."  "Right," I responded.  "Right; I keep forgetting."

All of us in our little family have acknowledged: This is not the death of our son and brother.  But everything for us is about life and death, and for me about mothering and bodies.  So what is this, exactly?  How much mental attention and energy does this warrant?  I guess it gets what it gets.  Some times a lot and sometimes none.

3.  I've been reading a few blogs, trying to retain my equanimity where some of the descriptions of the week after surgery are concerned, and trying to pick up practical information.  Some of them are incredibly helpful, full of tips that are obvious once you read them, but are not things that would have occurred to me on my own.  So I am wondering, in an unimpressed and sarcastic kind of way: Ten days away and I've received nothing from the hospital about what I might need for the day and night I get to spend there and for the days immediately following. Helloooooo?

4.  Best tips worth sharing: Pajamas that open in front (for ~ ahem ~ gross and messy activities) and have a front pocket, for a phone and ipod.  In the hospital, said one woman, I couldn't do much, but when I was vaguely alert, I could send and receive texts.  Second thing, if you want to do something for a friend facing this, or any other major surgery: Target (or whatever; Target is the one closest to us) gift cards.  There are a lot of little unexpected expenses, things you need that you might not usually buy.  Too late for me ~ I now have leggings and socks and men's t-shirts ~ but in case you want to help someone else out and ESPECIALLY if, like me, your cooking skills don't extend beyond grilled cheese, those little cards would be a godsend.

5.  I have some really, really bad moments, and hours, and longer.  But today I was muttering to myself (no, not out loud) that sometimes I really do get sick of how people just do not "get" certain things, like for instance the confluence of the death of a child and breast cancer, and then I thought, "But I do.  I have now become a person who gets it."  I can't say that I consider that to be good news.  But maybe , for someone else one day, it will be at least helpful news.

6.  I could, of course, write thank-you notes if I stopped blogging!


Monday, November 7, 2011

The Way: Movie Review



A couple of  nights ago, The Lovely Daughter and I went to see The Way.  Here's a brief promotional  summary from the film's website:

"The Way" is a powerful and inspirational story about family, friends, and the challenges we face while navigating this ever-changing and complicated world. Martin Sheen plays Tom, an American doctor who comes to St. Jean Pied de Port, France to collect the remains of his adult son (played by Emilio Estevez [Martin Sheen's son and the movie's director]), killed in the Pyrenees in a storm while walking the Camino de Santiago, also known as The Way of Saint James. Rather than return home, Tom decides to embark on the historical pilgrimage to honor his son's desire to finish the journey. What Tom doesn't plan on is the profound impact the journey will have on him and his "California Bubble Life."

 I've always felt an attraction to Long Walks - the Appalachian Trail, the Mountains-to-Sea Trail, and yes, the Camino ~ and maybe someday I'll even make one of them ~ and so I was initially drawn to the film for that reason.  Also, I know Martin Sheen to be a devout Catholic (more on that here), so I thought that the religious dimension of the walk would be dealt with seriously.  Insofar as the son's death ~ I didn't know about that, that it was the basis for the plot line, until a couple of hours before we left the house, and it gave me pause.  "Oh, let's give it a try," I concluded.

As a mother who has carried and dispersed her son's ashes hither and yon, there were many scenes in the film that might have been taken from my own life.  The ordinary day.  The phone call.  The police officer.  The crematorium.  The container of remains.  The first time that my eyes welled up with tears came when the French police captain, telling Martin Sheen "Buen Camino" and sending him on his way, says "I too have lost a child."  That current of understanding between parents; that need to say no more.

I thought that the movie was a bit slow and that the four main characters, and some of the supporting characters as well, were somewhat one dimensional. (Although, now that I think about it, there's something Canterbury Tales-esque about the entire scencario.) But the landscapes were breathtaking and the travelogue aspect seems to have captured what I have read of the inconveniences and discomforts of the Camino pilgrimage.  And the scene of the mass in the Cathedral of St. James de Santiago - SPECTACULAR:



(The above is from youtube, not from the film.  You should turn off the sound after the first few moments of music; it captures much more in the way of tourista commentary than the sacredness of the scene.)

Interestingly, and unexpectedly, this film has stayed with me.  I have been mulling it over, trying to ascertain what was so powerful for me.  Not the storyline, not the characterizations, not even the remarkable spread of countryside.  

Two small scenes.

One is the first of many in which Tom removes some of his son's ashes from the plastic bag in which they are contained to scatter them near the spot at which his son died.  I have been thinking a great deal lately, for obvious reasons, about nursing my babies all those years ago, memories now blending with those of removing precious ashes from ordinary containers in order to make sacramental connections with land and water.  Last week, I put some ashes in a locket so that I could wear them next to my skin as I was ordained to ministry.

I suppose that the scene has stayed with me because I did not know, until three years ago, what it would be, to feel the ashes of your child in your hand.

In the other, the main characters are relaxing at a hostel.  The day is drenched in sunlight, and the only woman among them sits in a window, relaxing with her everpresent cigarette.

There is a part of me, even after all that has happened, that remains capable of sitting in a window frame in the sunlight, being and present.

The Lovely Daughter is ready to hop on a plane to Spain.  I guess maybe I am, too.

**********

(Here's another review, if you prefer something less personal.)