Memorial Day 2011

Simple rituals. Simple facts. Yesterday I gave a talk on military mental illness and the economics of veteran’s mental health. I was blessed to have the podium at a wonderful social justice church in Troy, New York. I spoke about the China Marines and the survivors of the Palawan massacre in World War II.

Today John and I went to the local Memorial Day parade. We walked for an hour—he looking for students and me waving to vets—the older the better. And the “Vets for Peace” and “Grannies for Peace” too.

The man who married us was walking in the parade and he came over to say hello and gave me a flag on a stick. “You need a flag to wave” he said. And indeed I do.

Gratitude

When I write the word “Gratitude”

I think recovery.

I don’t think “cancer”.

I think gratitude for him

for me, for this

--surely not this?

We are grateful or we are not.

We say Yes! and Thank you!

All around me well-meaning

friends say,

“You can say ‘No’!”

But I say Yes

I don’t No

Who knew…

“It’s like a relationship on steroids” I

told a friend

then realized

that was no metaphor.

Relationships and Cancer

Relationship and cancer. Relationship with cancer. Relationship when you know your heart will be broken--but not before it is healed and opened wide. Take a look at this relationship and cancer story from today's New York Times.


http://video.nytimes.com/video/2011/05/16/health/100000000821590/love-endures-all-even-cancer.html?nl=todaysheadlines&emc=thab1

Save the Date: Sex and Cancer

There are a lot of things to feel squeamish about with cancer. But sex isn’t—or shouldn’t be—one of them. So here is a chance to listen, learn, talk and ask questions about sex and cancer. Mark your calendar:

Monday June 13th --7 pm to 9 pm

at The American Cancer Society Hope Club (formerly Gilda’s Club)

One Penny Lane—off Wade Road—off exit 6 of Route 87 Latham, New York

There will be a panel presentation and open discussion about the anatomy, physiology, chemistry, etiquette, hope, fear and what real people really do when making love in the time of cancer. I will be part of the panel along with other experts on cancer, caregiving and sex.

Sex Education

When I was in Junior High there was a popular song called “Get Yourself a College Girl”. The boppy, beach-boy lyric went like this: “”Get yourself a college girl, a well-read book, a knowledge girl. Get yourself a coll-edge girl.”

I hummed that song all the time—maybe thinking it was affirmation that skinny but smart girls like me could be just as desirable as my classmate Bethany Springer, who started wearing a bra in Grade Six.

Now I am reading the new book, The Social Animal, by New York Times columnist, David Brooks and last night my eyes were opened by this paragraph:

“Men want to do the same sexual acts regardless of education levels, but female sexual preferences differ by education, culture and status level. Highly educated women are much more likely to perform oral sex, engage in same-sex activity and experiment with a variety of other activities than less-educated women. Religious women are less adventurous than nonreligious women, though the desires of religious men are not much different than those of secular ones.”

I guess a little learning goes—and comes—a long way.

Cancer101 Cancer Planning

“There are wedding planners and baby planners; why not a cancer planner?”

That’s what Monica Knoll thought as she struggled through years of managing her own cancer, and that thought led to her design and launch of the nonprofit and web-based, Cancer101.

Knoll was motivated to find and found a new kind of resource for people going through lengthy cancer treatment as a result of the way her work and career were impacted by first breast cancer and then later ovarian cancer. She found quickly that cancer stigma is strong and persistent in the workplace. Juggling cancer in the long-term is a challenge to workers and workplaces. Hence Knoll’s creation.

Do take a look at: http://www.cancer101.org/

 

Good Friday

I have an Easter memory from years ago. I was living in Washington, DC, and that year was a low point in my life. My older sister had recently died and both of my brothers were seriously ill; my best friend was leaving town, and on top of that I was questioning my work.

In my journal that April I wrote, “Am I depressed?” When I read those pages now I laugh and shake my head. “Depressed?” That I even had to ask. In that long year I thought I’d never laugh again, just as I thought I’d never again feel love, the joy of easy friendship, or the satisfaction of good work.

I went to church that Easter out of both habit and desperation. I had grown up in a church going family. It was what we did. And so to honor the family that I was losing I went. I chose a big downtown church for Easter services—one with hundreds in the congregation--not daring to visit a smaller church where I might have to speak to people or be embarrassed by my own tears. I wanted the paradoxical safety and anonymity of being in a crowd.

The minister that Easter Sunday said many things that I don’t remember but one sentence has stayed with me all these years. He said, “We live in a Good Friday world…” That I understood. A Good Friday world is a world full of suffering, questioning, unfairness, trouble, mistakes, hurts, losses and grief. That was certainly confirmation of my life that day. “But”, he continued, “We are Easter people.” Those words stopped me cold. I was stunned to be reminded that painful morning that there was something other than what I was feeling.

My life was not instantly transformed; his words did not change the course of my brothers’ illness; nor give me answers to my questions. But the idea of being “Easter people” gave me a pause in my grief and the teeniest hope that there really did exist something other than pain.

Today all of the things that hurt so much back then have changed. As my brothers died friends came forward to help. I began to write and publish. Months later I fell in love and moved to upstate New York where a new life began with new friends, new work and yes, of course, new problems.

What strikes me now is that this believing in “Easter” in the midst of “Good Friday” is as much about being an American as it is about being Christian. Americans are, by character, a people of reinvention. There is an extra layer of intention that we bring to “new life” that isn’t true even in other predominately Christian cultures. As Americans we are future oriented, we look forward not back, and we are, for the most part, a culture of optimistic, hopeful people.

The gift from that Easter service many years ago was the reminder that we are, by religion or culture, a people who believe in possibility. When our hearts are shattered we are sometimes shocked to discover that there is joy as well as pain inside. Out of the ashes of our mistakes, from our defeats and even our despair, we rise again in better lives.

The "C" Word

Oh no, oh yes…the “C” word again.

Last week I was at an oncology-hematology center that is near where I work. This time I was there for me. It just happened to be the most convenient place to have some blood work done that my doctor requested as part of my annual checkup. But what was I thinking? It’s a chemo place! And it had all the same sights and sounds and smells as the place that I went to with John for 16 months. I had so underestimated the impact and so did not understand how much creeping trauma I was still carrying around just based on that environment.

But I did my time in the lab and had to wait for the nurse so I did what I always do—I raided their magazine stash. Same stuff: CURE Magazine, Breast Cancer Magazine, Your Chemo Today—why would anyone want to read that stuff? But read I do and so I pick up “Your Guide to Chemotherapy” because on the cover it said: “Sex, Intimacy & Cancer” and I thought, “Hey, here it is the article I have been waiting for.”

But sadly no. The article about Sex, Intimacy and Cancer was about—yes—the “C” word: Cuddle. More bad guidance from Cancer Land where everyone cuddles and no one gets laid.

I really hate these chemo-cuddle stories. They are infantilizing and demoralizing. I know they mean to be helpful but I just gotta believe it would be so much more helpful to say, “No stiffy? Here’s what ya do” or “Your partner may need to F*** like a bunny just to feel alive so go with the flow.”

Here is a maybe 600 word article on SEX and not once do they use the words penis or vagina. That is just sad. What it says to readers is, “Not only do you have cancer but we think you are stupid too.”

And—I’m steamed up here—“Taking a long walk together” is NOT “part of sex”. Unless, that is, you are walking to the porn shop or to the bed room in a really big house.”

Love in the Time of Cancer

Here is a true story of Love in the Time of Cancer. This is from today's New York Times from Tara Parker-Pope who writes the "Well" column in the Times' Health section. This inspires humility. Not just two cancers but a baby too. Click below and read on:


http://well.blogs.nytimes.com/2011/04/11/a-couples-knot-tied-tighter-by-dual-diagnoses/

Slogans for Caregivers

I’ve been thinking about slogans this week. We use slogans in 12-step programs and Buddhist tradition uses slogans to teach the Eight-fold path. Self-help uses slogans and bumper sticker sayings as reminders. The power of a slogan is that it is memorable and if practiced it can kick in just when you need it.

So what would be good slogans for caregivers? A couple that come to mind right away are: Put on Your Own Oxygen First (when you want to do one more thing) and Ask and Ask Again (dealing with doctors, nurses and health insurers) and Tell Someone the Truth.

That last one is lifesaving because every caregiver has to have someone—not the patient and probably not even a family member --that they can tell their darkest truth to—all the scary yucky feelings like anger, resentment and wishing the patient would die. (Don’t believe a caregiver who says they have never had that thought—you are obviously not their “someone”.)

Something I heard this week that could also be a caregiver slogan is Whose Need is It? This is one I could use often I think to decide if I’m asking something of the patient because I have a need for their presence or to decide if they actually are the one who has a need for mine. It helps to keep expectations a bit clearer and maybe that would help the anger and resentment to decrease.

Taboo and Curse

Reading more of James L. Kugel’s wonderful book, “In the Valley of the Shadow”. He weaves together theology, religion, research and his personal experience with cancer. In a fascinating chapter about the role of omens and taboo practices in ancient cultures he bridges back to his illness and the experiences in our culture around cancer. He writes…

“In fact, almost the sole remnant of that very ancient mentality in the world today is the way we feel about cancer; it is still potent magic. In many languages, although the word cancer is well known, people avoid using it in ordinary speech. “He’s very, very tired” they say in my in-law’s part of France, while, “He has the sickness” is common in Israel, and no doubt elsewhere. Saying the actual word might cause it to come into existence—in you or in the person you are talking to—or, at the very least, it may hasten the end of the person you are discussing.

Until recently the New York Times obituaries would say, “…after a long illness.” Doctors themselves try to let patients down easy by avoiding the C-word, or even “tumor” instead what is discovered is “a slight growth”, “an unusual polyp” or “an irregularity that should be checked.” Despite all clinical evidence many people still avoid shaking a cancer sufferer’s hand.”

In the Valley of the Shadow

I’m reading theologian James Kugel’s new book, “In the Valley of the Shadow” in which he examines the state of mind and sense of human smallness that comes when one is diagnosed with a serious illness. Fascinating that Kugel’s response to his own terminal diagnosis is his choice to follow and document his own thoughts and changed sensibility. A scholar, thinker and theologian even unto death.

There are many wonderful things in this book. Part of what stands out is how Kugel’s awareness of himself and others shifts as his illness proceeds. Here is an example:

“Most people, when they see someone ravaged by chemotherapy, just tend to keep their distance, and I suppose that my colleagues, experts in ancient and medieval religion, were no exception. Fear also plays a role. “That could happen to me” is rarely spoken but often thought. If people do talk to you about your condition, they usually get around to asking you what your first symptoms were---this could be useful information, after all! Some are also eager to discover something in your family history or some aberrant feature of your diet or daily regimen that can be blamed for your catastrophe while leaving them in the clear…All this, I’m afraid is merely human.”

What Really Matters?

There are many strategies for discernment. Many spiritual techniques and practices taught by experts in psychology, spirituality, even management. But there is nothing like seeing an irregular mole that wasn’t there yesterday to snap my mind into, “What really matters?” I go into mental triage: What now? What later? And while it is a bit paranoid and a kind of self torture to always be killing him off like this —it is also a gut compass that points me to the truest truth about what matters to me and who I am—good and bad—if his cancer does return.

Let Evening Come, Jane Kenyon

Let the light of late afternoon
shine through chinks in the barn, moving
up the bales as the sun moves down.
Let the cricket take up chafing
as a woman takes up her needles
and her yarn. Let evening come.
Let dew collect on the hoe abandoned
in long grass. Let the stars appear
and the moon disclose her silver horn.
Let the fox go back to its sandy den.
Let the wind die down. Let the shed
go black inside. Let evening come.
To the bottle in the ditch, to the scoop
in the oats, to air in the lung
let evening come.
Let it come, as it will, and don’t
be afraid. God does not leave us
comfortless, so let evening come.


--Jane Kenyon

Last Days, by Donald Hall

“It was reasonable
to expect.” So he wrote. The next day,
in a consultation room,
Jane’s hematologist Letha Mills sat down,
stiff, her assistant
standing with her back to the door.
“I have terrible news,”
Letha told them. “The leukemia is back.
There’s nothing to do.”
The four of them wept. He asked how long,
why did it happen now?
Jane asked only: “Can I die at home?”
Home that afternoon,
they threw her medicines into the trash.

Jane vomited. He wailed
while she remained dry-eyed – silent,
trying to let go. At night
he picked up the telephone to make
calls that brought
a child or a friend into the horror.

The next morning,
they worked choosing among her poems
for Otherwise, picked
hymns for her funeral, and supplied each
other words as they wrote
and revised her obituary. The day after,
with more work to do
on her book, he saw how weak she felt,
and said maybe not now; maybe
later. Jane shook her head: “Now,” she said.
“We have to finish it now.”

Later, as she slid exhausted into sleep,
she said, “Wasn’t that fun?
To work together? Wasn’t that fun?”
He asked her, “What clothes
should we dress you in, when we bury you?”
“I hadn’t thought,” she said.
“I wondered about the white salwar
kameez,” he said –
her favorite Indian silk they bought
in Pondicherry a year
and a half before, which she wore for best
or prettiest afterward.
She smiled. “Yes. Excellent,” she said.
He didn’t tell her
that a year earlier, dreaming awake,
he had seen her
in the coffin in her white salwar kameez.

Still, he couldn’t stop
planning. That night he broke out with,
“When Gus dies I’ll
have him cremated and scatter his ashes
on your grave!” She laughed
and her big eyes quickened and she nodded:
“It will be good
for the daffodils.” She lay pallid back
on the flowered pillow:
“Perkins, how do you think of these things?”
They talked about their
adventures – driving through England
when they first married,
and excursions to China and India.

Also they remembered
ordinary days – pond summers, working
on poems together,
walking the dog, reading Chekhov
aloud. When he praised
thousands of afternoon assignations
that carried them into
bliss and repose on this painted bed,
Jane burst into tears
and cried, “No more fucking. No more fucking!”

Incontinent three nights
before she died, Jane needed lifting
onto the commode.
He wiped her and helped her back into bed.

At five he fed the dog
and returned to find her across the room,
sitting in a straight chair.
When she couldn’t stand, how could she walk?
He feared she would fall
and called for an ambulance to the hospital,
but when he told Jane,
her mouth twisted down and tears started.
“Do we have to?” He canceled.
Jane said, “Perkins, be with me when I die.”
“Dying is simple,” she said.
“What’s worst is… the separation.”

When she no longer spoke,
they lay along together, touching,
and she fixed on him
her beautiful enormous round brown eyes,
shining, unblinking,
And passionate with love and dread.

One by one they came,
the oldest and dearest, to say goodbye
to this friend of the heart.
At first she said their names, wept, and touched;
then she smiled; then
turned one mouth-corner up. On the last day
she stared silent goodbyes
with her hands curled and her eye stuck open.

Leaving his place beside her,
where her eyes stared, he told her,
“I’ll put these letters
in the box.” She had not spoken
for three hours, and now Jane said
her last words: “O.K.”

At eight that night,
her eyes open as they stayed
until she died, brain-stem breathing
started, he bent to kiss
her pale cool lips again, and felt them
one last time gather
and purse and peck to kiss him back.

In the last hours, she kept
her forearms raised with pale fingers clenched
at cheek level, like
the goddess figurine over the bathroom sink.
Sometimes her right fist flicked
or spasmed toward her face. For twelve hours
until she died, he kept
scratching Jane Kenyon’s big bony nose.
A sharp, almost sweet
smell began to rise from her open mouth.
He watched her chest go still.
With his thumb he closed her round brown eyes.

Jane Kenyon and Donald Hall

Jane Kenyon and Donald Hall: Poets, lovers, husband and wife. Both had cancer . Donald, much older, lived. Jane, much younger, died. But, both being poets, they had the habit of turning all life experiences into poems. So we have poetry collections from each of them describing each turn and phase of their roles as caregivers and as patients. It’s fascinating to read them together and to trace the intrusion and trajectory of cancer through their loving—and sexy—marriage.

Here is a poem by Jane Kenyon when she is ill and Donald is her caregiver:

I saw him leaving the hospital
with a woman's coat over his arm.
Clearly she would not need it.
The sunglasses he wore could not
conceal his wet face, his bafflement.

As if in mockery the day was fair,
and the air mild for December. All the same
he had zipped his own coat and tied
the hood under his chin, preparing
for irremediable cold.


Coats, by Jane Kenyon

Sex

Sex becomes so important when I think about him dying. But that makes sense, doesn’t it? Sex is generation and death, annihilation.

Always the Counting

When I was a little girl I would sit with my mother while she visited with neighborhood women. I’d play while they talked. I remember a certain bafflement when they talked about some young person who just got married or when a first baby arrived. They counted backwards on their fingers. I didn’t understand till years later that they were counting backwards from 9—nine months—to determine if that baby had been conceived before the wedding.

Similarly I have this tick of counting when I read of someone dying from correctol cancer. How many months? How long after diagnosis did they die? And then I compare John’s dates and make my corresponding assumptions and deals with God.

I did it today reading Meghan O’Rourke’s memoir, “The Long Good-Bye” about her mother’s death. A beautiful book, I read it noting the literary allusions and the dates—counting, always counting. O’Rourke’s mother died two-and a-half years after diagnosis. I think back; how many months is it now for John? OK—we’re past that marker so is that good—he’s out of the woods? Or is that bad—he’s closer to bad news?

I did this also when Tony Snow, White House press spokesman, died in 2008. His diagnosis was the same as John’s and he died a month short of three years. Knowing the similarity of their diagnosis and treatment he was a scary marker for me. And so I’d count.

I can feel my mother in me when I tick off the months and years, 2011, 2010, 2009 and I know that the clock is inside of me, ticking, ticking, ticking.

When Death Comes

Tonight I read an interview with Mary Oliver in Oprah Magazine. Perhaps one of the first interviews that's she's allowed to be really public. She talks about her partner Molly's death and that she decided that she had two choices after her partner of 40 years died: She could buy a small cabin in the woods and lock herself in or she could unlock all the doors and invte the world in. She chose the unlocking. And she says this amazing thing. Five years after the love of her life has died, Mary Oliver says she is the happiest she has ever been in her life. She also talks about doing therapy--at 75 --to deal with a terrible abusive childhood. All of this gives me such hope and a model of a way to be in the world--and in myself.

Here is the poem, "When Death Comes", by Mary Oliver that I am memorizing:

When death comes
like the hungry bear in autumn
when death comes and takes all the bright coins from his purse
to buy me, and snaps his purse shut;
when death comes
like the measle-pox;
when death comes
like an iceberg between the shoulder blades,
I want to step through the door full of curiosity, wondering;
what is it going to be like, that cottage of darkness?
And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possibility,
and I think of each life as a flower, as common
as a field daisy, and as singular,
and each name a comfortable music in the mouth
tending as all music does, toward silence,
and each body a lion of courage, and something
precious to the earth.
When it's over, I want to say: all my life
I was a bride married to amazement.
I was a bridegroom, taking the world into my arms.
When it's over, I don't want to wonder
if I have made of my life something particular, and real.
I don't want to find myself sighing and frightened
or full of argument.
I don't want to end up simply having visited this world.

~ Mary Oliver ~

Solution

Today I cleaned my desk, said no to an event, resigned from a volunteer committee and came home early to walk outside. I packed a better lunch, scheduled a manicure, ordered skincare and new contacts online, told two people how I really feel and told John about my frustrations. Tonight we’ll watch a silly movie and go to bed early. Maybe we’ll make love.