It's Not About Me...but then maybe it is

Caregivers always apologize when they talk about their stress or their tiredness or their troubles. It’s almost a guarantee that if a caregiver dares to cop to feeling bad, mad or sad—or God forbid resentful—they will immediately say, “But I know this isn’t about me.” Or “But I’m not the one who is ill.”

But then again, maybe you are.

Here is more from Professor David Karp (“The Burden of Sympathy”): “All illnesses are potentially contagious in the sense that the stories of sick people become deeply woven into the biographies of those who feel commitment to them.”

The Burden of Sympathy

Another great book—this one is not new –it was published in 2000 and I stumbled across it looking for something completely unrelated. The book is called “The Burden of Sympathy” by David Karp. Karp is a sociologist who writes about caregiving and families of people with chronic mental illness. “The Burden of Sympathy” is his third book and this one is for all of us who are caregivers to people with chronic illness of any kind. And for many cancer is chronic—until it’s not.

Karp writes about the psychology and sociology of caregiving—but even though he is an academic, his writing is not. In minutes I was flipping chapter to chapter and underlining sentences—always a sure sign that this book has to become one of mine.

Here is the quote that opens Chapter One:

“As little as we know of illness, we know even less of care. As much as the ill person’s experience is denied, the caregiver’s experience is denied more completely.”

Looking for Signs

I laugh now at how many times in my life I have prayed for a sign to let me know if I was on the right path or for help in making a decision. In very difficult moments I have begged for skywriting from the universe and just last week I told a friend that I’m still waiting for an envelope from God with my name on it. Maybe I watched too many episodes of Mission Impossible as a kid, but part of me wants instructions that spell out clearly what I should do with my life.

I know God doesn’t work that way, but I also know I’m not alone in wanting him to. Some people flip coins or watch birds or follow the crude metals index. Others keep psychics in business and ensure that books on spiritual guidance top the bestseller lists. I’ve tried it all and I’ve been to Tarot readers, thrown the I Ching and I have a well-worn set of Rune stones.

Years ago when people close to me were dying and I was tearfully demanding to know God’s will, a friend who was more experienced in grief chastised and reassured me by saying, “Gods will is what is”. The simplicity and profundity of that statement silenced me for a while.

But I come back again to wanting to know, and often it’s at this time of year and there’s a good reason. As the winter begins and we are faced with dark and cold there is a pull from deep in our bones that drive us to seek light and answers. The need for light at this time of year is so great that we adapted culturally to give it to ourselves. We've had Hanukkah, now Solstice and soon Christmas, all great stories about finding light.

The part of the Christmas story that has always meant the most to me is that of the three wise men making their journey, traveling on a hunch, a belief, and their deep wanting. They had studied the sky for years and then they saw their sign.

In his poem, Journey of the Magi T.S. Eliot wrote: “At the end we preferred to travel all night, sleeping in snatches, with the voices singing in our ears, that this was all folly.”

Of course that is the problem with star following. You just don’t know. We see this most painfully now looking at the news. Stories of young men and women as heroes in Iraq and others, the same age who commit terrible crimes. All of them following their stars. But how do you know until you show up whether there’s going to be a baby or a bullet?

So the wise men’s lesson is all about faith: We do our best, we study, we consult with others, we try to be wise men and women, but we have to get on our camels, bring our gifts and hope we are doing good.

This is solstice week and these are our darkest days. We cope in the most ancient of ways. We go toward the light--to neon and the mall, to crowds of shoppers, even as our ancient relatives were drawn to stars and the fire.

Through all of this we’ll read our horoscopes. We’ll hope our loved ones will be spared the only thing that no one can be, which is death. We’ll look at the night sky and try to believe. No wonder a baby born in a barn is a great story. No wonder we look for signs.

The Glorious Debris

“Every one of us is called upon, probably a few times, to start a new life. A frightening diagnosis, a marriage, a move, loss of a job…

And onward full tilt we go, pitched and wrecked and absurdly resolute, driven in spite of everything to make good on a new shore. To be hopeful, to embrace one possibility after another—-that surely is the basic instinct…..Crying out: High tide!

Time to move out into the glorious debris. Time to take this life for what it is.”



--Barbara Kingsolver, from High Tide in Tucson

Montaigne on Death

I’m reading Sarah Bakewell’s new biography of Montaigne. Wonderful format: she writes one question: How to live? And answers it in 20 essays giving glimpses into Montaigne’s life and writing and thinking.

A near death experience was a key to his life and thinking. He wrote:

“If you don’t know how to die don’t worry; Nature will tell you what to do on the spot, fully and adequately. She will do this job perfectly for you; don’t bother your head about it. Life is more difficult than death; instead of passive surrender, it takes attention and management. It can also be more painful.”

Little Rebel Cancer Cell

A story today in New York Times about dentist’s use of radiation. Dentistry radiation is not regulated and the levels in the new machines are higher etc. It got me thinking again about that little cancer cell. It’s that one lone cell that goes off in the wrong direction—that changes—that starts the cancer. That one “trouble-making” cell.


But what if that cell, that little guy is—however misguided—trying to save our lives? I mean, look at what we do—the chemicals we eat all day long, the medications we take all of our lives, the radiation we pour into human bodies to check for cavities and broken bones and acne. All good stuff by themselves. And all the things in our environment that have changed in 50 years. Maybe none of it is dangerous by itself—I am not a “don’t drink out of plastic bottles” girl. But what might be the collective effect?

And that one cell—Brave? Misguided? Hopeful? Says, “No” and heads for the door. “I am gonna change”, she says. And yes the door turns out to be a wall or a cliff—but the little cell says, “Enough, I’m changing.”

Can you blame her, really?

The little cell tries something new—tries growing—tries changing—and it starts a reaction that becomes cancer.

Haven’t we all done this? Had enough of the pain, the problems, the same old same old and said—“That’s it I’m trying something, anything”. We tried to go blonde when we had olive skin, or tried to lose weight using diet pills. Or we tried plastic surgery or Botox. Enough said. We have all done bad relationships, bad jobs, joined groups that turned out to be cults or just enormous wastes of time. We say, “It’s just part of growth” when we do it or our favorite nephew does it.

But the little cell that tries to change—we declare a war on her.

Our Friend Fear

I heard from a reader today (Thank you V.) who wrote about the fear. Yes, we can call it “the” fear. Fear for caregivers is so fluid and shape-shifting and paralyzing. Hardly anyone in Cancer Land talks about this. Of course we read and hear about the fears of the patient—fear of diagnosis, surgery, the fear before tests and maybe after. Awful yes –but nurses and case managers and doctors forget that other person often sitting in the room.

The fear that we caregivers live with is also disabling. What makes it even harder is the constant feeling that we can’t complain about it or express our suffering. In most cases we are not the one with cancer and that presumes that we are the one that can still go to work (not really) and still sleep (not really) and are not in physical pain (not really).

If only it was a fear that stays still like a fear of flying or a fear of snakes. But caregiver fear is a hydra with many heads and a demon that shifts its shape. It takes bad news ten different ways and then takes good news—“He’ll live” (but how?) or “They said yes to more chemo” (to what end result?) and that becomes six new ways to be scared.

Fear is our friend with a major personality disorder. Our dear Sybil—with us all the time and ever so vigilant as our constant companion.

Like Keith Richards Inside Us

Today is the official publication date for “The Emperor of Maladies” by Mukherjee. It is being widely and wonderfully reviewed. In Sundays New York Times Book Review this quote:

“Cell growth is the secret of living, the source of our ability to build, adapt, repair ourselves; and cancer cells are rebels among our own cells that outrace the rest. If we seek immortality, Mukherjee writes, then so too, in a rather perverse sense, does the cancer cell.”

Is that cancer cell rebel –in its little black leather jacket and bad eyeliner --simply misunderstood?

You Can't Kill Cancer

The reviews continue and the controversy picks up for Dr. Mukhergee’s biography of cancer-- “The Emperor of All Maladies”.

Here is another quote from the book:

“Cancer is a flaw in our growth, but this flaw is deeply entrenched in ourselves. We can rid ourselves of cancer, then, only as much as we can rid ourselves of the processes in our physiology that depend on growth—aging, regeneration, healing and reproduction.”

War (on cancer) What is it Good for?

I’m reading “The Emperor of Maladies” – this new book is a psycho-socio-historical story of cancer and Cancer. The book is being heavily reviewed right now and everyone in Cancer Land is going to cringe a little or a lot. Those of us who love in the time of cancer will also be nodding and crying but cheering too.

The author Mukherjee –an oncologist--is able to break down the language, culture, economics and the politics of cancer.

From the review in November 8 2010 New Yorker magazine:

“But it’s hard to wage a war against a poorly defined enemy. If the enemy (cancer) doesn’t define itself, then you can configure the enemy you need for the war that you want to fight. That’s what happened with the war on cancer. It gave definite form, Mukherjee says, to an adversary that was essentially formless.”

“Cancer --a disease of colossal diversity—was recast as a single monolithic entity. In this way the War on Cancer resembles less the war on Nazi Germany than the War of Terror.”

In fact it is simply that: a war on terror. The war on cancer is designed to increase our fear of mortality, our fear of death and ultimately our fear of life.

Basket Ball with Balls

Tuesday night we went to the Basket Ball—the regional event for Coaches vs. Cancer—a fundraiser by the American Cancer Society. Pure brilliance in combining sports, sports fans, men, booze, cheerleaders, sports memorabilia and a podium of tear-filled stories and sports metaphors.

It was moving and the stories of loss and endurance were powerful. Perhaps what moved me the most was the clear evidence of service: by cancer volunteers and coaches—people with plenty busy schedules who gave even more to help this cause.

I realized that this is what I respect most of all—regardless of the cause or the issue—people who will step up, raise their hand, open their calendar—even more than their checkbook—and volunteer for what they believe in.

Day of the Dead

Today I celebrate Dia de los Muertos, or Day of the Dead. It’s not a holiday I grew up with but one I’ve borrowed from the Southwest and Mexico. It’s become one of my favorite holidays partly because it’s a good spiritual counterpart to Halloween. Except for the candy, October 31st doesn’t leave much for grownups. Being scared of goblins and ghoulies lost its sway when I got old enough to lose people that I loved. The dead just aren’t scary in the same way anymore. In fact, I’d welcome a visit from some of them.

That’s what Day of the Dead is about. There is a belief that on this day the veil separating this world and the next is thinner and so it’s a time we can be closer to those that we love who are dead.

Day of the Dead celebration centers on rituals for remembering loved ones. We can visit in our imagination or feel their presence. It can mean prayer or conversation, writing a letter or looking at old photos. The tradition that I use includes making an ofrenda, or altar, something as simple as putting photos and candles on the coffee table and taking time to talk and remember. We also have chocolate as a symbol of the sweet and bitter separation from those we love.

A ritual is a way of ordering life. Whether Purim or Advent, hearing Mass or saying Kaddish, small ceremonies help us sort and reframe our memories. When someone dies the relationship doesn’t stop, it’s renegotiated, literally re-conceived.

This isn’t a very American idea. Culturally our preferences are for efficiency and effectiveness; even with grief we use words like closure and process.

I remember my frustration when I was grieving and well-intentioned friends would suggest I move along in my process and quoted Elizabeth Kubler-Ross. The simplified version of her theory lists stages: Denial--Bargaining--Anger--Depression, and Acceptance. But it’s false to create an expectation of five discrete steps. This listing implies order and that a person can move from point A to point B and be done. That makes grief seem like an emotional Monopoly game where you go around the board, collect points and get to a distinct and certain end. This false notion of linearity is apparent when we hear people judge someone who is grieving, “Oh she missed the anger stage”, or “He hasn’t reached acceptance yet.”

I always thought that “losing a loved one” was a euphemism used by people who were afraid to say the word dead.. But after losing my brother Larry I know that lost is the perfect word to describe the feeling that follows a death. Something just out of reach, still here, but also gone.

Though he died several years ago my feeling about my brother is that I have misplaced him; It’s that sensation of knowing that my book or that letter I was just reading, are around here somewhere…if I could just remember where I left him.

I think this is why we can sometimes be so hard on the grieving, and why we want them to go through those stages and be done with it. We love closure and things that are sealed and settled. But death and grief, for all their seeming finality, are not as final as we would like.

So tonight I’ll make cocoa and light candles; we’ll look at pictures and tell stories and we’ll laugh.

The root of the word grieve is heavy. We carry our dead as a cherished burden. Death ends a life but not a relationship. Who would want to close the door on that?

Christopher Hitchens

...is dying from esophageal cancer that has metastasized. He is chronicling this in Esquire Magazine and NPR is also interviewing him weekly. What else does a writer do than take his own experience and turn it into words, hopefully mining the experience for others but also for himself? That’s what we do.

Hitchens, you may recall, has written and spoken extensively about God, religion, and belief and his non-belief in each of those. Now cancer. Soon death and I must say that I do admire him for the integrity of his beliefs about belief.

Yesterday he spoke about the many people who are praying for him and he makes a distinction between those whose prayers are good wishes for his health or comfort versus those whose prayers are more along the lines of, “God, maybe now that this bastard is dying he’ll finally believe in you.”

Put Away the Pink

Ladies please. Put away the pink and get out the red. October’s pink boob month would have all of us convinced that we are within minutes of dying of breast cancer. Not the case. Not even close. Breast cancer is no picnic but even though some people die it’s not likely to be your killer.

What is very likely to kill you is your heart and cardiovascular system.

Read this and tell your friends: The NUMBER ONE killer of women is Heart Disease.

Read this too: More women die of cardiovascular disease than the next five causes of death combined, including all forms of cancer.

Saddest fact: Less than 50% of women know that heart disease is our biggest killer. We are so swept away by the pink propaganda of breast cancer that we are dying from marketing and fear. That makes us real boobs.

His Check Up-- My Check Out

It hit me hard today. The date was on the calendar a long time. But I had made one deal with God four months ago, so did I dare another? I did. But then it was today. John’s appointment was at 4 o’clock and at 9am I was mad at him, talking to myself, talking to him—though he wasn’t in the car with me. I was mad about his work, my job, money, family, yeah even sex. Of course it took me a good 30 minutes to get it: I was mad about cancer.

Mad that every four months this big crevasse opens and I drop in. He doesn’t—or says he doesn’t. But I wonder. These are the times I wish to be male—to have that ability to compartmentalize.

But the good news is that I caught myself. I talked myself down—or up as the case may be. I remembered that I loved him with or without cancer and that maybe cancer makes it all more precious. Lesson of second marriage and of cancer: dust doesn’t matter, check books don’t matter, laundry doesn’t matter but good sex and watching movies together does.

But what I still hate is that I live so far out. I live in four month increments. I live now—the exam at 4pm was fine and most of the blood work was fine-- But we wait four business days till the results are back for the “cancer marker” that crucial blood test that tells whether cancer has returned.

Pink Ribbons vs Reality

Oh it’s pink frenzy time again. Breast cancer awareness as corporate communication. You just know that half of the companies with pink ribbon promotions don’t give employees leave time to get mammograms or provide adequate family leave time for a caregiver to help someone with cancer. It’s a sales promotion with pretty pink pretend ad copy.

Wouldn’t a real commitment to breast cancer awareness be something like giving all women in a company two extra hours “Pink” leave each year to get a check-up or take any measures for her health. That I could almost swallow.

But the real service to women would be to tell them where the real risks hide rather than scare and distract them with pink shoes, and pink shirts and pink cupcakes.

Heart and lung. CPR. Cardio Pulmonary Reality.

October Day

O hushed October morning mild,

Thy leaves have wakened to the fall;

Tomorrow s wind, if it be wild,

Should waste them all.

The crows above the forest call;

Tomorrow they may form and go.

O hushed October morning mild,

Begin the hours of this day slow.

Make the day seem to us less brief.

Heart not averse to being beguiled,

Beguile us in the way you know.

Release one leaf at break of day;

At noon release another leaf;

One from our trees, one far away.

Retard the sun with gentle mist;

Enchant the land with amethyst.

Slow, slow!

For the grapes sake, if they were all,

Whose leaves already are burnt with frost,

Whose clustered fruit must else be lost

For the grapes sake along the wall.



-----------------------------------Robert Frost

A New Job

The constant is change. I’m taking a new job starting in mid October and oh my, I had forgotten how hard it is to leave a job. There’s some thinking I need to adjust. I’m leaving a small organization and there is a lot to do to be able to leave and to make sure that everything is in place and that things are in good shape for the person who will follow me. Yes, just a touch of perfectionism! Ok, more therapy for that!

I’m excited but tired. Sad but happy. Nervous but encouraged. I’m looking forward to my new colleagues and to work that I can throw all of me into and to being part of a team again.

Will this change our relationship? I worry about that. John says no, but hey, he’s a guy. For today it’s all to the good and will be if I worry less and sleep more.

Married Life

People keep asking me if it feels different to be married. Yes and No. No because we still live in the same apartment, the grocery list is more or less the same, I still use my favorite Sharpies to mark the newspapers before he reads them, I buy two half gallons of milk at the same time and he still shakes his head (but we never run out—or low).

But different too because something—some teeny anxiety --has settled down inside of me. Different also because I think about his family now as my own as well—and gratefully they have reciprocated so I have these wonderful in-laws and extended family. There is a little bit more “we” in my vocabulary though knowing my old tendencies I’m careful to not lose the “I” as I know that is the surest way for me to lose the “we” and the happiness I’ve found.

Sexual Healing

I do believe that sex is life giving. It is for me. Maybe I overestimate the power of sex or my own sexual power but there are moments when I think, “Every time he has an orgasm I am saving his life.” Ok, maybe that’s a kind of a ramped up, X-rated Florence Nightingale but there is something to it. Libido is life force. An orgasm is “le petit mort”—a little death. Sex is a little life and a little death.

A Man A Can A Plan

I am NOT a good cook. Let’s get that straight. But I like to play with food and I LOVE cookbooks! I have tons of cookbooks which makes everyone laugh when they see the shelf in our kitchen. But it’s the culture, language, history, social-psych thing.

Tonight I made a meal from one of my favorite “weird” cookbooks. I have a whole category of weird cookbooks: The Beet Cookbook, The White Trash Cookbook (quite extraordinary in every way) and today’s pick, a cookbook called: “A Man. A Can. A Plan.” This is a cookbook for men who can’t cook—bachelor of a certain era, divorced guys, it’s written very guy—explains what utensils are—“grab one of those big spoons with holes in it”. And it’s made of that very thick, shiny cardboard, the kind of paper used for books for babies. But the cool part is that the recipes are based on food that comes in cans. Yes my dear friends who only eat organic or local or vegan will DIE. So die. There is good food in this book—Think Grandma. Think church supper.

Tonight’s yummy casserole was “Spaghetti Western”:

Two cans of Spaghetti O’s. One can black beans. Half pound ground round, two chopped scallions, 2T grated cheddar, 2T chili powder. Cook all in one pan. Six minutes tops.

Add nice salad: Baby spinach, Bibb leaves, a tomato, salt & pepper, juice of half lemon and olive oil.

Dinner was ready in under ten minutes and it was delicious (And there are leftovers)

One serving: 500 calories and 14 grams of protein. Which means I can have biscotti and ice-cream while we watch another episode of “To Serve Them All Our Days.”

Death Weeps

September 12 2001

Even the dead weep at a time like this.
All those on the other side, making preparations to welcome such a large group.
Death is going door to door in New York City walking past doormen, going up dark stairways, down halls and taking the train to Long Island and Connecticut and getting off at little Cheeveresque stations in the suburbs.
Death nears exhaustion, leaning in one more doorway, waiting for the buzzer to be answered. Hesitating, sighing, tired.
She has tears in her eyes as she visits another house, and another and another.
At night death goes down to the site and sits on the rubble wishing it wasn’t true.
Some of the dogs come and sniff at death, then back up and give her a funny look.
Even death is too tired to be moved.

Take Me Out to the Ballgame

Yesterday, Labor Day, we went to Yankee Stadium to see his New York Yankees and my Baltimore Orioles. It was a perfect end of summer. And, also, a kind of unofficial end to our honeymoon. We managed to stretch our post-wedding travels from art and history in Paris to sand and salt at the beach, then to joy and frustration on the golf course and finally ending the summer and our honeymoon at Yankee Stadium with an Orioles win!

I realized watching the game that we have so much in common and so many differences. We do like many of the same things: Literature, music, baseball and golf, but we like them for different reasons. I love a live baseball game. I love the look and smell and sound and history and arcane sports trivia. I like knowing how baseball impacted history and how it has come to be the perfect spiritual metaphor. And John, well, he cares about the actual score—winning and losing. How ‘bout them O’s?

And now, the day after Labor Day, it’s a new year. Time for new pencils and red plaid shirts and knee sox and loafers. I still want new loafers every September. Though I’ve moved from Bass to Cole Haan to eyeing Chanel. New shoes, new life, new start.

Excerpts from Yglesias's A Happy Marriage

“He was vigilant. He no longer feared that one of her infections would kill her, as he had in the early days when cure was a real possibility. The end was inevitable and very near. She had to die of something because cancer does not kill alone. It kills with accomplices, so why not a sepsis?”

“He talked in narrative spurts sorely in need of punctuation and editing, without proper endings or middles. It was a symptom of fatigue and an adaptive response to the way most people reacted to his wife’s frightening illness: they interrogated Enrique intrusively about the logistics of Margaret’s battle while carefully avoiding discussion of its denouement…When he raised the subject of victory or defeat for Margaret, and friend were quick to end the conversation, he would intone to himself in a whisper: “I am become Death, the destroyer of chitchat.”

“In truth, he could find no comfortable place to sit in the company of her illness. He would feel guilt and shame no matter how he behaved. She was going to die and he was not; in the undeclared war of marriage, it was an appalling victory.”

Happier than Fiction

I’m a writer and a reader, yes. But sometimes so amazed, delighted and wondrous at finding a story in fiction that is so perfect for my life.

The day before we left for our honeymoon, I grabbed a new paperback from the shelf at my local bookstore. The title attracted me: “A Happy Marriage”. The perfect thing for a honeymoon, yes?

Yes. “A Happy Marriage” by Rafael Yglesias. His 5th novel. He also wrote “Fearless” which is one of my favorite movies. But this happy marriage is a stunning tale. It is to some degree the story of Yglesias’ own marriage. The courtship, love affair, struggle and finally devastation—all still in love—as Yglesias cared for his wife who was dying of cancer.

Coincidence? Act of God? Just literature doing what it does? Literature giving a wedding gift?

Literature on its own and the literature of caregiving. Intensity of language and of medicine. Man and woman. Husband and wife. Sickness and health. Until death or “The end.”

Paying--Too Much--Attention

I can get a little crazy in the land of Love and Cancer. There can be such a thing, I think, as too much intimacy: When John goes to the bathroom in the early morning I listen. I try not to but I do. Oh yuck, I know, but true.

I am paying attention to the sounds. Does he take a long time? diarrhea? constipation? I listen and gauge. I’m worried about his colon. The part he’s missing and the part he still has. When we are making love and my face is inches from his scrotum and I see the small patch of brown skin I wonder. “How long has that been there? melanoma? testicular cancer? His cough in the morning; normal? allergy? lung cancer?

Saint Paul said, “I die daily”, and he meant surrender. I kill John daily, and that means the sad vigilance of cancer and caregiving.

Cancer Men

This is just too good! I found this when searching for info on love and cancer:

Cancer men are incredibly appealing to many women. Cancers seem to have insight into what makes a woman fall in love. They are creative, passionate and loyal. When you meet a cancer for the first time you may be instantly smitten. They have been known to sweep a woman off her feet after only a few short dates.

Le Marriage

We are married. A small wedding. Our families and the close friends who have been our support for several years. Laughter, tears, cancer as a wedding guest—everyone recognized cancer as one of the attendants. We wrote vows that included being faithful—yes, I know—and that included “in sickness and in health”—knowing what that really means. We had great food, a lot of poetry, books, statues of Mary, our dear stuffed Babar and blue ribbons everywhere.

Then we flew to Paris and walked and ate and walked and ate and made love with windows wide open in the City of Lights.

Married

Yesterday, August 15th, John and I were married. A small ceremony in a school house. Family and friends with us. Beautiful flowers. Lots of laughter. Great cake. And this poem:

“Afternoon, in a Back Yard on Chestnut Street,” by David Keller


Here are a man and a woman, being married.

The entire world of summer lawns

holds its breath for the event. The trees

around them are lovely, displaying the small

breath and motions of August. The couple glance

at one another. Where has the moon gone,

the requisite moon? Nearby, a mother

begs her child, “Try to remember;

when did you have it last?” Oh,

impossible mystery. Where is joy

when it is not here? Time says nothing.

These things can happen, and will,

while children at the yard’s border play

among grown-ups tasting the summer’s wine.

Memory looks at its watch, smiling.

The moon will begin to come round

the way it always did but we’d forgotten.

The lovers touch hands and think of

some place they want to be, and go there.

The child, happy at last,

has remembered where its lost ball is.

In the garden the pink phlox and the lilies

show off, between the old moon

here in the hot sky and the one to come.

Everyone hugs or shakes hands

and walks off toward the future, waving.

The man and woman look at each other.

They know it means happiness, this year. They do.

My Hero

I’ve been debating all day about whether I can write this. “Too corny”, I thought. And “maybe I won’t feel this way tomorrow”. No, of course not; I’ll feel something else tomorrow. But today—all day—I thought, “He is my hero”.

John is my hero. We have been through so much crap with cancer and divorce and just life in the past two years that I sometimes forget that we have been friends for more than ten years. Ten years of coffee and books and ideas and laughter and too many cookies and cupcakes and hearing each other’s work questions and the juggling of reading and writing for both of us. We met as teachers and became friends, pals, annoyances, confidants, secret fantasies, outright fantasies, refusals, comforters, advisors, infatuations, lovers and partners. But always friends.

Now hero.

He is my hero.

Corny? Yes. But after all of the above corny is great!

The High Cost of Not Dying

It may be too hard to read if you have cancer but if you have a loved one with cancer you must read the Annals of Medicine article by Atul Gawande in the August 2 2010 issue of the New Yorker magazine.

With compelling stories and plenty of grey in a black and white world Gawande invites us to consider what it means to be dying—especially of cancer—when there is no end of treatments and procedures that can be tried, applied and administered.

Most interesting is his challenge to us about how death itself has changed because we no longer stop and let a person experience it.

This excellent essay walks us through the very high cost of cancer in both dollars and healthcare system costs and the cost to us as people when we treat cancer as a problem to be fixed. We lose not just dollars but part of our humanity—and for those of us who care for or have cared for someone with cancer—we lose an essential piece of being a loved one in the truest sense of that term.

This August 2 issue is on newsstands or at your local library. Check it out. Make copies to share with friends. Talk about it now.

If My Husband Ever...

“If my husband ever…”. Yes, with each round of celebrity infidelity we engage in the age-old game of, “If my husband ever…”. At 56, I’ve played this many times at lunch tables and water coolers and sitting on the floor in a girl friend’s living room. But at 56 I’ve also taken enough early morning phone calls from many of those same friends to know that even if you think you know what you’d do if you discovered a partner’s infidelity, you don’t.

Some leave at once, some never leave, some forgive, some don’t. Sometimes the ones that forgive stay but sometimes leaving is the route to forgiveness. Most chilling, I think, are those that never leave, never separate and never forgive. They keep up appearances—maybe are even envied by others for their perfect marriages which are glued together with hatred and spite.

The agony of infidelity does not discriminate. There is enough to go around. I’ve played all the parts: scorned wife, secret lover, other woman—and the friend who knew. There are no winners. No one has more or less pain.

Now, a new novel comes pretty close to accurately depicting each of those points of view. It’s a great read and even better as a book on CD to listen to in the car or at the beach.

If you have ever said, “I’d never” to any part of the extramarital triangle take a look at: “Heart of the Matter” by Emily Giffen.

Sex and Intimacy

It’s been a long time coming but finally an article about sex and cancer. Check out this very good article in the Summer 2010 issue of CURE Magazine. Written by Lacey Meyer the article discusses the challenges, feelings, fears and the shame. The article talks about libido, erectile dysfunction, hormonal changes and the conversations required. Yes, she does include the requisite bit on cuddling—oh please! But brave Lacey Meyer she also talks about masturbation and vibrators and pleasure.

Here is the link:

http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1484

Coaching Cancer

Last night a very moving moment on ESPN. Coach George Karl of the Denver Nuggets spoke passionately about his experience with cancer. First prostate and then throat and neck cancers. He spoke about being a man committed to winning and making a career pushing himself and others to be strong and win every time. He spoke movingly about the kind of winners and fighters he met in cancer treatment rooms and said, “I was not the bravest one in those rooms, many are braver than me facing those treatments for cancer.”

He addressed the live audience and the ESPN viewing audience asking for government commitment to fight cancer. And he asked that the United States government match dollar-for-dollar what is raised by the American Cancer Society and other cancer foundations.

What stood out was how much this big, strong man had suffered in his cancer treatment and was still suffering in his recovery from treatment. We so often forget that part. People with cancer have to survive both the cancer and the sometimes quite brutal treatments for cancer. That second phase can take a very long time.

“Death is the dark backing a mirror needs if we are to see anything.”



---Saul Bellow

My Happiness is My Business

I’ve been grumbling today. My to-do list is too long. I’m achy and tired. I’m mad at John. I’m mad at John because his list is not as long as mine. And he doesn’t sweat the small stuff in the ways that I do. But in my head I’m making my case: “It’s all up to me; look at all I do; I’ll never get it all done; how can I feel sexy or happy when I have all this to do?” Etc.

Then this thought came to me: My happiness is not his business. Many of the things on my list are there because I care about details. I coordinate and I make things match and I’m a nut about following up with friends; I have a long list of self-care tasks that I do because I want to and I have two jobs and I love to read, dance, play golf, exercise and take classes. Yeah, the list is too long, but it’s mostly my list.

I can’t tell you how grateful I am for this fresh thought. My happiness is my business. When I try to make my unhappiness his business then I’m making me a victim. Wow.

Chemo Love Therapy

Kisses that last at least ten seconds and hugs of at least six seconds increase the flow of oxytocin and serotonin. Oxytocin is the love chemical that promotes bonding, and serotonin, as we all know, is the happiness drug.

XOXOXOXOXO

God Hold My Fearful Heart Today

God hold my fearful heart today.
Work scares me
Love scares me
Marriage scares me
Fragile bodies scare me
Hold my fearful heart today.

Amen.

San Antonio Dancing

We are back from a great vacation in San Antonio. It was a bit of everything: writing, speaking, learning, listening and play time. Part of the trip was a big conference and the best night included hours of dancing. Everything is big in Texas and that includes parties. In one hotel we went to three different ballrooms and danced in each one: Rock & Roll, Big Band and Texas Swing. We danced. No surprise that John is a good dancer even as he demurs—he’s an athlete and a musician so we danced to everything. Yeah, sometimes we had to make up our own moves but after a taste of Texas Swing I am determined to learn more.

The real treat of dancing that way though—and I’m guessing that swing dancers know this—is that the movement doesn’t stop when the music does. So even after stumbling-literally—to bed at midnight we kept reaching for each other all night and the dance continued.

Whatever..

I’m thinking about how things get reduced to a symbol, shorthand ways that we communicate, and the funny ways that people think/talk about cancer.

The other day I heard a friend talking to another friend about one of her friends who has cancer and she said, “Yeah and she has cancer…you know, the bandana and whatever.”

Cancer, the bandana and whatever.

The trouble is, I knew exactly what she meant.

Learning to Fall

So much falling in this “love in the time of cancer” story: Falling in love, falling apart, falling down in grief, falling down in laughter.

Last week my friend Stephen recommended a book called “Learning to Fall” by Philip Simmons. I got the book from the library and within minutes I was scribbling in the book. That’s always my clue that it’s a book I need to own so I ordered a copy for me and copies for friends too.

Simmons was 35 years old when he was diagnosed with ALS (Lou Gehrig’s disease) in 1993. That disease causes falls so the metaphor became clear at once. But his most eloquent writing is about all the other kinds of falls we take when we face life head on.

This is one of those books that you’ll want to copy out pages to give to friends or pass out at work so just go buy a copy now.

Here is just a taste from page 8 speaking about life problems:

“And here is where we go wrong, for at its deepest level life is not a problem but a mystery…Problems are to be solved, true mysteries are not. At one time or another each of us confronts an experience so powerful, bewildering, joyous, or terrifying that all our efforts to see it as a “problem” are futile. …What does mystery ask of us? Only that we be in its presence, that we fully, consciously, hand ourselves over."

I like this idea of seeing challenges not as problems to be solved but as mysteries to  wonder at. It doesn’t make it easier, and Simmons is clear on that too.

I think this is like the difference between happiness and joy. Happiness depends on certain positive conditions but joy is ever possible even in the hardest, saddest most challenging times.

Fathers Day

Many layers of grief, worry and sadness on this day. Missing my Dad, coming to terms with who he was, and wrestling still with the leftovers of that relationship and how even today I see myself struggle with commitment, love and belief that I am loved. All of that has an impact on my life with John.

For John too. Missing his Dad, sadness over his kids anger at him, hoping they will get it that he had to leave their mother to save his own life. But they are kids—men really—but with our parents are we ever not still kids?

But I have another layer of fear and sadness on this day. I worry about cancer too and how it might colors father’s day in years to come. Yes, cancer. I do the countdown in my head. I know the stats and they haunt me. He is well, yes. Beat the odds? We hope so. My deep fear for his kids is that someday they will have regrets over having missed the last three years of John's life--out of pride or because they wanted to  make a point or they could not let go the grip of man-to-man testosterone-fueled “rightness”. I have anticipatory grief for them and I wish time to fly so they can catch up before it is too late.

Caught Off Guard

Ah, and I thought I was so prepared. That’s the trouble with mental rehearsal of troubles. They catch on to your head and then and sneak up from another direction.

Yesterday was oncology check up day. Four month interval with blood tests, looking for the tumor marker and the “Can you open your pants for me?” the belly exam that I so love to tease John about. It does seem that the most attractive PA’s and nurses ask, “Can I see your scars?” and he obliges like they were his etchings.

It was all good, Blood work OK and tummy-tapping just fine. But me: not!

I was a crazy woman all day. Grumbling about minor infractions and feared big events. My scared-girl head took me on a day long roller-coaster of “he doesn’t love me” and “they (any “they” will do) will upset the apple cart of our good life.” Just a day of fearful scenarios that ended—I’m ashamed to say with me saying nasty things and finally sobbing.

Oh duh, cancer got me again.

I guess all’s well that ends well and our day ended with left over pasta, a Yankee win and an early bedtime.

Progress not perfection.

Celebrate This Day!

Years ago I was a student at Marywood College in Scranton, Pennsylvania. It was then a small women’s school, today it’s a University. I went there as a ‘returning” student. I was “older” in my twenties and I devoured the curriculum. Yes, one of those sit in the front and ask for more assignment types who frustrated the other students but who delighted the faculty. I was hungry to learn. That never went away.

A memorable teacher and class: the nun, Sister Rosemarie, who taught “Marriage and Family” addressed our class frequently on one topic: enjoy this day. She told us that any time you had occasion to celebrate you should. She said—attention on the younger women I think—that there will be so many occasions for tears in your life that any occasion that is good deserves celebration.

That has stayed with me.

As we head into this week with worry over doctor's appointments and sadness for the death of a friend's baby and struggle with so many losses buried in gains of this relationship. I hear Sister Rosemarie saying, “Celebrate!”

Flashback

Today I drove to Hudson, New York for a business meeting. I followed the directions and pulled into the parking lot where the meeting was being held. It was an oncology center!

I signed in at the lobby desk and was directed to the conference center on the second floor. I passed through the clinic area and saw the patients and families waiting. Patients were being called in for blood work and to have their ports checked. It came flooding back.

The waiting rooms. Waiting to be called. Patients tired and anxious. Families with their reading bags and knitting and cell phones. The stress on their faces. Greeting each other with careful nods in that small community that a chemo waiting room becomes.

Why this Blog OR My Moon is in Cancer

I’ve been writing this blog for a while now. Some of you have joined us recently so here’s a hint of what the “Love in the Time of Cancer” conversation is about. At its core “LITTOC” is a relationship story and a love story. Like all good love stories we have a complication: Cancer. Stage three colon cancer and so instead of romantic dates and lunches and vacations we forged a bond over surgery and doctors offices and learning about chemo.

I am lover and caregiver, but I am also a writer and fierce about what is happening to John and to me and to us. I am writing this blog to tell my side of the story. I am not objective. I am not unbiased and at times I am not a very nice person. But then, cancer is not very nice either.

I am also writing this because I hope at least one person can have their sanity confirmed by this blog. Most of the official cancer resources have tried to be helpful but there have been so many gaps and so many platitudes and so very much condescension that I want to give cancer patients --and their lovers --another perspective.

I am also writing this because as Mark Twain said, “I don’t want to hear about the moon from a man who has not been there.” Loving a man with cancer is my moon. Take the next step with me.

(For more detail you can click on older entries from the menu on the right—go to July 2008 and join the story as it continues to unfold.)

All's Unfair in Love and Baseball

Did you watch baseball last night? Did you see the end of the almost perfect game? We changed channels to be there, to see the moment, to witness baseball history. What we saw instead was heartbreak but also baseball history.

Tiger’s pitcher Armando Galarraga threw a perfect 8 and 2/3 innings. On the last ball the hitter makes contact and runs but Galarraga takes the ball to first and tags him out. The whoops begin but are cut short by the almost instant safe call by umpire Jim Joyce.

Shock everywhere. TV viewers could see it was out but the umpire called safe. Game over. Perfect game squelched. I rolled on the floor in pain. Sympathy. Empathy. Seeing something taken away unfairly.

That’s the part we can all relate to. The unfairness of it all. Galarraga did everything he was supposed to do. He was supposed to be celebrating today. But he’s not. It was unfair. Love and baseball and life are unfair. Marriages should not end especially “perfect” marriages of 20 and 30 years where everything seemed, at least, to be perfect should not end. But they do.

People fall in love with the most unexpected others. People get hurt. There is no instant replay except at the watercolor and at the bar and the family reunion where it’s like a sports talk show when everyone can trash the ex. And kids get hurt too and they are really just innocent bystanders. It’s unfair. All of it. But that’s why we love baseball. Even when it hurts as bad as it did last night it’s still a great game and it is just life.

The C Word

Well, yes, there is that C-Word. The one that is awful and horrible and grounds for divorce—(unless it is said in bed in the absolutely right moment of passion, heat and disinhibition.)

And then there is the other C-Word: Cancer. The one we talk about here.

There is a new Showtime TV series premièring August 16th referring cleverly to both of those words.

“The C Word” will star Laura Linney (John Adams, The Truman Show) as a suburban Mom with Metastatic Melanoma.

“If someone told you that you had two years to live, how would you change your life?” is what “C Word” producer Jenny Bicks (Sex and the City)-- herself a cancer survivor—wants to ask viewers of this comedy series to consider.

Mary's Cancer

In a community meeting today a colleague named Mary told us that cancer has returned to her body. It’s the third recurrence. She had just come from her oncologist and was celebrating that she had found a great doctor, a woman, someone she liked and felt was easy to talk to. Three occurrences, three kinds of cancer in eight years. “I’m proof”, Mary joked, “that you don’t need all your organs.”

I heard her talk about her faith. Not in a pabulum, saccharine way but hard won faith. Won in Cancer Land. I could feel everyone in the room –me too--shift in their assessment of their own day. Bad bosses, too many bills and even minor mishaps in marriage pale at comparison with three kinds of cancer.

Mary knows that her story has that effect. “I tell my friends” she said, “hang out with me and your life will seem really, really good to you; you’ll be so much happier.”

And she’s right.

Laurel's Blog

Here is the link to my friend Laurel's blog--in real time--as she undergoes cancer treatment. She's a fabulous writer in her non-cancer life so she brings that gift to this adventure and she adds a bit of spice as well.

Read on:

http://www.caringbridge.org/visit/laurelsaville

Jealousy

Yes, jealousy. One of the most universal human emotions that we cannot speak about. It’s gross and miserable and beyond uncomfortable and it strikes us mute. We sputter and spit and stumble in trying to express it without sounding insane or weak and yet—and yet—jealousy is a powerful emotion which taps directly into our bodies.

I have stumbled through this territory all of my life, and perhaps that is the clue. It’s old. Jealousy is always old. I’d like to think it is about this man or that woman but at heart it never is.

It is also never this: Jealousy is never about love, it’s never about sex, it’s never about attractiveness even though those may be the cards we play in trying ever so hard to explain our predicament when trapped in jealousy’s swamp.

It’s also—and I am slowly coming to get this—never about him.

My recent tutor is French analyst Marcianne Blevis in her book “Jealousy: true stories of love’s favorite decoy.” She makes the powerful and iconoclastic case that jealousy exists to help us and to free us. Yes, I know it never feels anything like that, does it? She’s onto something though. (Yeah duh, she’s a French psychoanalyst and psychiatrist and brilliant so I’ll concede that she’s “onto something”).

But look at this thing she says: Jealousy is a response to anxiety. (jealousy is not the anxiety but a response to a preexisting anxiety) and she says the anxiety arose early in our lives: “If an impulse in childhood is struck down by a prohibition, it transforms itself into a terror and anguish” Ok, that makes sense I will be jealous of one whom I perceive to be the thing I was never allowed to be. But then she says this: “Jealousy not only tangles our memories, but also puts us in contact with those unconscious forces of childhood that are struggling to free themselves from the realm of the incommunicable.”

I did mention that she’s brilliant right?

Jealousy is not bad no matter how bad it feels. It is built in as a gift to save us. It is as if it is the antidote taped to the side of the poison bottle. It comes to free us from the thing that was prohibited, the thing we transformed into terror long before we had words.

Here’s a simple way to get at this in yourself: What were you not allowed to do that you did naturally and freely as a child? What did your mother or father prohibit? What were you shamed for? Was there something you did or liked to do for which affection or love was withdrawn?

Gail Sheehy Caregiving Book

I’m reading Gail Sheehy’s new book: Passages in Caregiving. It is very good. It may be the best book available on caregiving. It’s heavy on specific advice and true—brutally true—stories and very light on the platitudes. Nowhere in this book does she talk about putting on your own oxygen first. Bless you Gail Sheehy for knowing that the “oxygen in the plane” thing is a stupid metaphor. For most of us caregivers the plane has already crashed

Tony's Wisdom

My friend Tony died of lung cancer a year ago. He was a charming and witty guy and he had the gift of seeing quickly and deeply into people and situations. His comments could sting but he was the one to go to for an honest and helpful assessment of any situation. He continued to tell the truth when he had cancer.

Last week I ran into a mutual friend and we talked about how Tony lived and died with cancer. She told me that he said to her, “You can’t have cancer in the midst of an orgasm or a belly laugh.”

Joy

We are writing our wedding invitation. We each write a draft and compare notes. They are almost identical. We both used the word Joy. It is the perfect word and has been from the start. Not happiness, not peace. But it is Joy.

Home Wrecker

Thank you Oprah and Rielle Hunter for re-framing the feminist discussion: “Are women property?” Most people would say that women are not, but when we enter this discussion it turns out that men are.

Hence language like: home wrecker and a husband stealer. But notice that in these discussions—on the air and all the next day at the water cooler—it’s always the women getting bashed—and mostly by women.

Infidelity brings out the most anti-woman beliefs in the most feminist women. We blame a woman or both women in the social construction of infidelity.

The “other woman” is a thief, home wrecker and man stealer. On the other hand if we determine that she’s not the bad one then certainly the wife is because she didn’t “hold onto her man”. In either case the man is just a piece of valuable property to be kept, owned, held or stolen. Kind of like a check book with a penis.

Oprah for all her big talking and her embracing of the pseudo-psychological and the empowerment of women still misses the basic geometry: Infidelity is a triangle. Three human beings, equally flawed, equally trying, equally noble, equally victims, equally responsible.

Women Writing About Women

“If a woman writes about herself, she’s a narcissist. If a man does the same thing, he’s describing the human condition.”

That’s from Emily Gould in the May 3 New York Magazine. Gould’s new book, “And the Heart Says Whatever” will be published this week. Her statement hits home as I struggle to write about cancer and caregiving and love and sex –and work and clothes and money and fear and thinking and therapy and food and writing.

Is it one woman’s story and/or the human condition?

Home Again, Home Again

I’m home from Orlando. A week of conferences, teaching, sunshine and a hotel room all to myself. One million people visit Orlando every year. That’s what the taxi driver told me on my way to the airport yesterday. They come for Disney and the other attractions. But my vacation this week was totally inside the Florida Hotel and Conference Center. It was Goldilocks’ perfection: not too big, not too small, with a nice restaurant on premises and a great swimming pool. If you love to swim you’ll get this: most hotel pools are too short for real laps, you have to begin your turn after a few strokes but this hotel had a pool that was looooong so great, luxurious long laps with a real deep end so I could play mermaid and practice dives.

I loved having a week away. It was mostly work; I was teaching and speaking to a national caregivers group and I loved the people. But each day after the last session I was so happy to decline dinner invitations and have a swim and then dinner alone in the lobby and then go to my room to watch junk TV and read my book.

Home last night to John grinning at me from the airport gate. Then showing off my new tan--real and faux—for him and having a proper and wicked welcome home on the dining room floor.

It's Always There

I leave today for a week in Orlando for a Caregivers conference. Longest we have been apart since John’s surgery. I notice that my mind calculates time this way.

Yesterday in the car on our way to a concert we were listening to the Yankees game and there was a public service announcement for Colon Cancer screening. We both listened and didn’t speak. It’s always there.

We talk about the future. We talk about “when we are old” but cancer and its nasty statistics are always there. And I calculate. I plan for a wedding and a funeral. I dream of white and black. My contingency plan is always in place. Cancer is the hum in the background. It’s always there.

Colonel Chicken Cares about Your Breasts but not Your Life

More pink madness. More marketing fear.

Does the American Cancer Society care about heart disease? Does the Heart Association care about diabetes? Does Liver care about Lung? Does Chrohn’s and Colitis care about strokes? Does anyone care about all of you?

Our health care, health research and health education have become so fragmented because of marketing—and money—that it seems as if no one cares if you live or die they just want the organs they care about to survive. You can go ahead and die, they seem to say, as long as you don’t die of OUR disease.

A current ad campaign by Kentucky Fried Chicken is pitching a special promotion for fried chicken and The Susan B. Komen Foundation. You can now buy a big pink bucket (a bucket!) of fried chicken for the woman in your life and 50 cents from each big pink bucket of FRIED chicken will go to breast cancer research.

This makes me crazy! Does anyone want breast cancer? Nope. Do we want to prevent deaths from breast cancer? Yep. But this fried chicken campaign begs me to ask The Colonel—and Susan B. Komen: Do you really care about women’s lives and their health or only about breasts (both women and chicken)?

Here’s a fast bit of women’s health research: More women—more by far—die of heart disease than breast cancer. More women will die of cardiac related disease than breast or any other cancer. So if you really want to promote women’s health do you want to encourage us to eat buckets of FRIED chicken? (We know that you think we are babies—all that pink crap we have to endure, but you also think we’re stupid and can’t Google the words: breast cancer versus heart disease.)

What’s next? How about some pink Marlboro smokes? Pink Absolut vodka shots? A gallon of pink Hagen Das Ice cream and pink Wise potato chips consumed on a big pink couch in front of a pink TV?

Come on Susan B. Komen, get some balls—or are you leaving that to The Lance Armstrong Foundation? Will one of these health charities have the courage and integrity to care about the whole woman? To say to women—and the market-:A whole woman has boobs and brains and a heart and lungs and we need to take care of all of it for good health and a good life.

Prevent Cancer

A friend of mine is an educator for The American Cancer Society. The info below is from her tagline. Startling when you think this thru. All we fuss about with cancer and One Third of all cancer deaths are related to what we do to ourselves and One Half can be prevented! Holy Chemo Batman!

Tracey's tagline says:

One-third of all cancer deaths are related to nutrition, physical inactivity, and being overweight or obese. One-half of all new cancer cases can be prevented. Check out cancer.org/greatamericans to learn what action YOU can take to protect yourself!

The Marriage Artist

I was talking to my friend Stephanie yesterday about John and our plans to get married in August. “Why get married?” she asked me. The question, asked by others too, has nagged at me. Why get married when we have both been married before; when we won’t have kids; when we don’t know what might happen to his health or to our lives?

Perhaps the implied question: Why are you getting married again? Both of us married before –four past marriages between us--so why again? We talked about the cultural issues, the social status, the fact that marriage carries an additional satisfaction knowing that there are some who have bet against our relationship.

But there is something else: I like being married. As I’ve described it to friends, I like the container of marriage. I have always envisioned marriage as a container in which two people concoct something chemical, physical, emotional and spiritual. Some of the creations live a long time and some don’t. Some have stunningly beautiful chemical reactions, some make stinky messes, but all are living things.

Yesterday talking to Stephanie—as we pushed and pulled at this idea --I realized another part of this. Marriage is a creative act—and yes, in a way that living together is not—the materials are more expensive, there is an audience and there is no net. The very legality adds a risk factor. Seeing marriage as a work of art and myself as a marriage artist came closest to making sense of why I am willing to do this hard, imperfect and often uncomfortable thing over and over. Perhaps it is a kind of performance art created in front of a live audience. Or an installation –bizarrely conceptual and wildly improvisational.

It is also why the question, “Are you happy?” seems irrelevant to me. Friends-- wondering about this marriage –have asked me, “Are you happy?” But that’s not the question that I ask myself. I’m not always happy. What artist is? But am I interested? engaged? challenged? stretched? learning? surprised? perplexed and ultimately deeply changed? Yes to all of the above.

All of these years trying to find my medium, here it is at my finger tips. Marriage as medium. The marriage artist.

Letting Go of My Father - Magazine - The Atlantic

Letting Go of My Father - Magazine - The Atlantic

Here is a powerful caregiving story and a picture in neon of what caregiving stress is like.

God is Love is Sex is God

Church, passion, kneeling at communion. Our shoulders and hips touch but our prayers are private and intimate. God forgive me, change me, heal me, bless him, show me. Bread in wine, flesh and blood and we eat it kneeling. Devour a man’s body and juices on our knees. We drink blood. Absolute carnality, absolute intimacy, absolute love.

Rising we are healed, saved, restored.

We reenter our pew and he grips my hand so hard. There are tears in his eyes. He chokes, “I love you.”

We come home to the New York Times, mocha coffee and Italian pasties from Bella Napoli. I’m reading about palliative care and he is in front of me, tears again, kissing me, tugging at clothes.

“Is there any greater compliment than a man who wants to f*** you?”asks Helen Gurley Brown.

And he does. And we do. Laughing, grunting, crying all over each other’s bodies, mouths, hands, fingers, legs.

Finally tired and hungry.

God is love. Sex is love. He is risen today. Amen

The Easter Brother

I consider the following to be quite telling about my own personality: I never believed in Santa Claus. I never, even as a little kid, imagined or believed that a man would go house to house in a red suit and bring toys and stockings to boys and girls.

I did, however, believe, until I was ten or maybe even older, in the Easter Bunny. In my own defense I have to explain that we lived near the woods and I saw all kinds of rabbits, little baby bunnies and distance-covering jack rabbits, all the time. But I also had two older brothers who, as only big brothers can, facilitated, my belief. Sig and Larry would talk just slightly out of my earshot about The Bunny. “Don’t let her see him”, and “Did you see the basket he left next door?” They also, to make it more convincing, put bite marks on the handles of our Easter baskets.

My brothers died when they were 42 and 48. Now I’m the oldest. At Easter I miss them. I miss having an Easter basket from Lar who –even as an adult—made me one that included the bunny’s teeth marks to remind me just how naïve I had been. And I miss our sibling tradition of finding the family “King Egg”. As Easter approached we would each decorate our own hard-boiled egg, fortifying them with dye and crayon and competed (Sig and Lar were both went on to become engineers) by ramming our colored eggs together to see whose broke first.

I also miss dressing up for Easter services, complete with new dress and corsage. The three of us continued to go to church on Easter even when we had walked away from organized religion. We kept this holiday because we all liked the uplifting Easter hymns like “Up From the Grave He Arose”.

I kept going to church on Easter even as, and after, Sig and Larry were dying because those Easter hymns gave me a weird hope. It was not a hope of miraculous recovery for either brother, or necessarily for a reunion in the “Great Beyond”, but hope for my own “arose” from the heartache of losing my brothers, my playmates, co-conspirators and occasional torturers.

One of my final conversations with Sig was about my car. I was 40 years old but still easily defeated by my car worries. Larry, who was then sick, was caring for Sig who was dying, and I called their house in tears to report the impending death of my car. Larry, who was on the phone with me, relayed the mechanic’s opinion to Sig who was lying in what would soon be his deathbed.

Lar said to me, “Sig wants to talk to you”. I was surprised because Sig’s speech had become painful and very difficult for him. I waited until Larry positioned the phone for Sig to talk.

“Here’s what you tell them….”, he began, and he proceeded to dictate a set of car repair instructions to convince any mechanic that I knew a nut from a bolt, and that this girl had a brother who would not see his sister taken for a ride.

At Easter I have the best memories of a girl with brothers—of a basket-carrying rabbit who was “just here a second ago” and of making faces to spoil the, “Come on; Say cheese” Brownie snapshots that Dad took of our Easter outfits.

Apart from any theology, Easter lets me believe in the resurrection of my family, of my all too gullible girlhood self, and in a life that rises, falls, rises and dies over and over as we each cycle through layers of loss and gain.

What Jealousy Offers

In my therapist’s office I read a back issue of Psychology Today from August 2009.

Here was the fascinating tidbit I learned about jealousy:

French Psychiatrist, Marcianne Blevis,—(It really helps that she is French I think) wrote a book called, “Jealousy—True Stories of Love’s Favorite Decoy”. She insists that jealousy is a signal—not to blame a partner—but to look within. Inside ourselves, she says, we will find the source of insecurity that makes a rival seem superior to us. What’s at stake in jealousy—she suggests—is not the partner or the relationship—but the survival of our sense of self.

What is exciting about this idea is that it follows another of Blevis’ assertions: All human emotions exist to help us figure out who we are in the world. So jealousy too is a productive emotion for us. This very thing we cringe to feel or are shameful to admit is trying to help us claim a self. Jealousy is a resource that we call on when we feel at risk, when our sense of self is in jeopardy. “When we are jealous we are in the grip of an identity crisis.”

But invariably, according to Blevis, we misdirect our attention. We imagine our so-called rival with an aura of magical attributes—yet we are the one who assigned those attributes to the rival!—and they represent (hello projection!) something unrealized in ourselves.

I love thinking like this and ideas like this that turn it all upside down.

Think about the kind of people who trigger jealousy for you. Pretty? Young? Sexy? Smart? Successful? Children? Travel?

They are shouting thru a megaphone—This is what I want! They are invitations to take a step toward something that YOU want.

Time Travel--What is Meant to Be

I am reading “The Time Traveler’s Wife” by Audrey Niffenegger. The movie was so-so but the book is intriguing and delicious. It is one of those books that would never have survived an MFA program workshop..I can just hear the whining—Time Travel!!

But yes and it works. It works in plot and in metaphor and in spiritual challenge. It raises the questions of why we are where we are in our lives and why some relationships make sense even when they make no sense at all.

This week I read several articles that say that relationships like mine with John, “never work” but this one seems too. And we were both in marriages that were “perfect” but then in what way were they not?

“Were you looking for me?” I asked John yesterday. And he said yes, “all of my life”. “I was so afraid I’d die and never have loved like this.”

Those are the kind of words that you do read in romance novels. WE have them here and we have all the other kinds of words too including, “screw you” and “No friggin’ way”. But I keep praying and trusting—and sometimes not trusting.

Will we someday know why this happened in our lives? Will we get a note or a nod from the future and have peace with the cost of being together? I don’t know but I like to think this was meant to be.

Married Illness

Here is a new and wonderful book about making a good—or decent marriage—while facing chronic illness. Called: “A Husband, A Wife & an Illness: Life Beyond Chronic Illness” written by Dr. William July and his wife, Jamey Lacy July.

They had just begun their marriage—his first and her second when a terrible auto-immune illness began to torture her. A former personal trainer and super athlete she was reduced to chronic pain, a life of medical appointments and treatments and a changed body and appearance. The blows were to her and to them. They went bankrupt, lost their dream home (her big income was gone overnight) and their lives were changed in every way. But, they write, they found a way to make a marriage in this long painful illness. It helped that Dr. July was and is a marriage and relationship counselor. But even knowing doesn’t always mean doing.

Powerful lessons from his mistakes and their almost mistakes: the well-spouse has to keep living; has to have a life apart; has to have a self. Not easy to do is it caregivers?

For many of us cancer too is a now a chronic illness. Our minds if not our lives are focused on what’s next, fear, and planning.

Here is a book that is simple, practical and very forthright about how a marriage can survive and sort of thrive in the face of all that.

For more practical wisdom go to theri website: http://www.couplesfacingillness.com/

Letters from the Land of Cancer

A new book adds perspective to the thing I have often challenged: the idea that cancer is a war. Obituaries say, “After a valiant battle with cancer”, “He/she lost a heroic fight with cancer.”

In his last book, “Letters from the Land of Cancer”, Walter Wangerin writes that it is not cancer we fight but mortality. And in that we all are engaged no matter the disease or even those who are blessed with the gift f long life. We die, we die, we will die. Sooner, later, easier or hard. We will die.

What he adds to this discussion—even as he writes during his experience with terminal lymphoma—is that if our battle is really with mortality then—for those of us who have faith—we are engaged in battle with God.

Dare the obituaries say, “After years of fighting God on mortality she finally surrendered.” Or how about this: “After a lengthy battle with God—in the land of cancer—God won.”

Ask the Right Questions

1. Is this an act of faith or an act of fear?

2. Is this an act of self-love or an act of self-sabotage?

3. Will this choice add to my life energy or rob me of my energy?

4. Does this choice empower me or disempower me?

5. Am I choosing from my divinity or my humanity?

6. Will this choice bring me long-term fulfillment or bring me short term gratification?

7. Am I standing in my power or trying to please someone?





from The Right Questions, by Debbie Ford

All of It

A friend of mine told me what a wise friend of hers told her when she was contemplating marriage to the man she had been living with.

The friend told her to get very quiet and “make a list of all the things that upset you, annoy you and that you don’t like about him”. Then very carefully look at that list and ask yourself: “Can you accept each item on that list?”

If you can, then you can marry him because those things will not change.

Failing and Flying by Jack Gilbert

Everyone forgets that Icarus also flew.
It's the same when love comes to an end, or the marriage fails and people say they knew it was a mistake, that everybody said it would never work.
That she was old enough to know better.
But anything worth doing is worth doing badly.
Like being there by that summer ocean
on the other side of the island while
love was fading out of her, the stars
burning so extravagantly those nights that anyone could tell you they would never last.
Every morning she was asleep in my bed
like a visitation, the gentleness in her like antelope standing in the dawn mist.
Each afternoon I watched her coming back through the hot stony field after swimming, the sea light behind her and the huge sky on the other side of that.
Listened to her while we ate lunch.
How can they say the marriage failed?
Like the people who came back from Provence (when it was Provence) and said it was pretty but the food was greasy.
I believe Icarus was not failing as he fell,
but just coming to the end of his triumph.

"Failing and Flying" by Jack Gilbert, from Refusing Heaven. © Alfred A. Knopf, 2005 .

Chopin's Heart

Today, February 13th is the birthday of the Polish composer Frederic Chopin. When he died in 1849 his body was buried in Paris. But his heart, at his special request, was placed in the wall of The Church of the Holy Cross in Warsaw.

Where would you like your heart to be when you die?

Where is it now?

Don't Name It

I heard an artist speak this week about making art and how we see. He was talking about perception, and how thinking distorts what we see.

He said, “The best way to see something is to NOT name it—words stop seeing.”

It’s a challenge but it works...when you look at a tree try to see it with out saying “tree” to yourself or telling yourself all the things you know about trees: green, vertical, growing, leaves, etc. Just see without the words and you’ll see more.

Pretty cool.

Then it hit me; I could try doing the same thing with people. What if I saw him without saying, “John” or “lover” or “cancer” or “teacher” or “man” or “mine” or any other words that typically flow thru my head unbidden? What would I see if I looked but didn’t label and didn’t name?

Sights & Smells

We went back to the Oncology Center yesterday for John’s check-up and quarterly tests. So far so good. Basic blood work was OK. But we now wait a few days for the “cancer marker”. What struck me yesterday was the sensory recall we each had at the chemo center. I could feel and taste the rooms and I could feel my body contract and prepare as I did every week we went there. The waiting and eating and waiting and watching. But I was surprised when John said, “I have to get out of here before the smell kills me”. He could smell the old smells. I smelled nothing but he had recall and recognition of the smell of the place—and the smell brought back all of his bad feelings about those months of chemo.

Oncology Day

I have been grumpy for the last week. Grumpy to the point where I knew it was me and not him. Fussing at every little thing. Making any little thing into a big thing. Then I turned the page of the calendar: February. And there it was. The four month check up with John’s oncologist. Blood work and the tests.

It’s fear. It gets better each time but does not go away. I imagine the worst. Imagine what they will say, what he will say and what I will do. I imagine the hospital again and chemo again, and I think about the stats. The terrible statistics for colon cancer.

I remind myself feelings are not facts. I remind myself he is in God’s hands. I remind myself that I am in God’s hands too. And then I start to outline a very specific course of action for God.

Oh well, this is the day. We’ll go to the doctor. The good news is that this day puts work, hair, jobs, people and all other issues in perfect perspective.

Beyond Faith. Where is God in Cancer?

Does God cause cancer? Prevent it? Choose who gets it? Will he cure it? Cure it for some people? Our view of God is revealed in our prayers: God as punisher, as father, as parent or as Santa. In prayer do we ask for magic? Special consideration? Or do we ask for strength to cope with what is? Perhaps we petition for someone else’s cure? Do we believe that some people should have --or not have --difficult things, like cancer, to deal with?

A common first response to a diagnosis of cancer is, “Why Me?” Some people stay there and others move on to, “Why not me?” Implied in this is a sense of God or Higher Being or Mover in our lives or the universe.

Cancer often leads to these big questions. And that sends us looking for resources, experts, and theology. Now, a new book “Beyond Faith” looks at an intelligent person’s belief in God. The book by former trial lawyer, William Penick, deposes God in a thoughtfully imagined interview—yes, with God, and shows with humor and insight into human nature, how we create God.

Do You Still Have Cancer?

I have noticed a way that people will sometimes try to ask about cancer without actually asking about cancer. Saturday we were at a basketball game and John was seeing folks he hadn’t seen in a while. I heard several—guys—asking him, “So how is EVERY thing?” John would answer, “I’m good; I’m good”. I heard the question buried in the question: Do you still have cancer? I get this too sometimes, people will ask me, “How is he DO-ing?” and it is the slowing down in the question and the odd emphasis on “every” and “do” that signals the question they want to ask but don’t want to be caught asking: Does he still have cancer?

Mammogram Poem

Mammogram By Teri Bordenave


I
Good luck she said as
I left the room, clothes in one
hand, borrowed garment clutched in
the other, protectively, against
my left breast.
My left breast - the one over my heart.
My left breast - the one she just flattened and x-rayed in the darkened room.
My left breast - the one they took another look at today.
My left breast - one of the two that fed my daughter’s life.
My left breast - the one that wears your favorite nipple.
My left breast - the one I now cradle, instinctively, in my sleep.



II
It was a voice I didn’t recognize,
the one in the message on my phone.
“I’m sure you’ve heard by now,” it said,
“we found some abnormalities
in your mammogram.” Turned out to be
Tanika, film librarian at the diagnostic center
looking to add more x-rays to her collection.
Mine. “So we can compare,” her voice
trailed off as my ears started to close up,
my whole head fell into a large pool
of murky pond water, body following, as I
tried to remember which way was up.


III
I’d been here before. When I was twenty, alone
and on medicaid. In those days, you were put
under, put up in the hospital for three days, put
through the wringer because you were poor and
the medical students needed to practice looking
at breasts, taking off and replacing bandages.


Filling out my paperwork, the woman in Admissions
asked me my religion. Agnostic, I told her. “No dear,
how were you raised?” she asked slowly, as though
I didn’t understand the importance of her question.
I think she didn’t know how to spell it. So,
I told her I’d been raised Catholic, but was now
in recovery. I don’t think she understood the
importance of my answer. When I woke from
the drugs, to a male voice calling my name,
and saw a priest, anointing me and praying, I knew
I was dying. Twenty. Alone. In a cold hospital
room, in the cold Northeast.
I was wrong.


IV
“It will hurt more this time,” Ellen warned me as
I stepped up to the GE machine “ ‘cause we
have to look more closely at this one area; the
suspicious area.” How can a breast, something
so soft and maternal, so sexual and sensual, so
lovely and nurturing have a suspicious area, I
wondered. GE and its “Imagination at work”
tagline was bringing good things to my life today
I kept telling myself as the plates did their best to
squeeze all the imagination right out of me.

I waited as she consulted with the radiologist. I
sat in the cold black plastic chair in the softly-lit
room wondering why mood lighting is a part of
getting a mammogram. I sat hoping that I’d soon
be on my way, thankful for this tool, and grateful
I’d not have to see one again for twelve months.
Twelve minutes, felt like thirty, and back she came
Dr. Rad in tow. As soon as I saw him, heard him
tell me his name, shook his hand and tried to
look him in the eye, I knew. This was not good.
I was right.




Teri Bordenave is a poet and an organizational development consultant. She lives on Kent Island in Maryland and also in the White Mountains of New Hampshire.

Corporate Cancer

In Sunday’s New York Times business section there’s an article about Trish May, founder and CEO of Athena Partners. She’s 56 and has used cancer to find her mission, passion and profit.
She had breast cancer at 39 in the midst of a big career at Microsoft. She is the creator of Microsoft PowerPoint. Now there’s a mixed blessing; we can love her or hate her for that gift to society.

But her next gift was taking her cancer experience and applying her business skills to create a line of products—Athena Partners—including bottled water, chocolates with 100 percent fo the profits (it’s corporate not nonprofit) going to cancer research.

I was moved by her story and impressed by her actions. I had to ask myself why I liked her while many cancer survivor “It changed my life” stories turn me off. I think it’s this: there is nothing whiney about this woman. She is a survivor –cancer did change her life—but she is not a victim. She is committed to the cancer cause because of personal experience and her attitude is forward, “Let’s do something” rather than backward, “Look what happened to me.”

Can I make this shift in my thinking too?

Unexpected Gifts

A challenge this weekend became a gift.

On Friday I came home to find that John’s ex-wife had been to our home and left a pile of pictures and cards on our doorstep. It was creepy and felt like a scary intrusion. When I found the stuff I had to make a quick decision. We were heading into a long weekend that we’d planned to have some romantic time together. I was upset by the intrusion but didn’t want us --or me-- to devolve into anger and accusation. I realized standing on my doorstep—key in hand-- that this could become a blow up or we could do this differently.

I prayed.

John arrived a few minutes later and I showed him what I’d found and said, “Let’s do this differently.” We went inside and talked. I told him what I felt and my fear, and he told me what he felt and his fears. We agreed that we had to do something. John said, “We will respond as a couple, and as us, and as we.”

Instead of fighting we talked. Instead of losing the evening we made dinner and watched a movie. Saturday we talked again about what to do. He said this is happening to us as a couple and we will respond as a couple. He drafted a letter to his ex-wife that we edited together and both signed. The conversations were not all easy. We talked about hurt and fear and the future trouble that this might cause.

I kept praying to change my thinking, my beliefs and my behavior. I felt myself stretching and being stretched. I didn’t get mad. We held hands when we talked. We heard each other and decided together.

Sunday night watching TV we thanked each other. We had in fact done it differently. We had our sweet weekend and we had become closer as a result of working out a solution together.

Last night, coming home from a concert, we talked in the car and realized that this weekend was a turning point. Facing this unsettling situation together had helped us recommit as a couple. It was a gift.

Chekhov's Double Life

Today is the birthday of Russian writer, Anton Chekhov. In addition to amazing plays and stunning short stories, he also wrote:

“Medicine is my lawful wife. Literature is my mistress.”

Marriage and Weddings

I loved Elizabeth Gilbert, “Eat. Pray. Love” Read it, listened to it: God and pleasure and faith and fear and overcoming fear. Yes it helped that she had a big house to sell and a huge book advance. But Ok that does not counter the humor and good grace of her book. I especially loved when she had everyone in the universe co-sign her prayer to have her divorce end and to have peace with her ex. And that water tower scene in India. Again turning that ex over to God—higher selves meeting and releasing.

In this week’s New Yorker magazine a review of Gilbert’s second memoir, “Committed” about marriage and reluctantly marrying the man she fell in love with at the end of book one. At the end of the book review this great line:

“There is good reason to end such stories with weddings, buoyant celebrations of love. Because what follows a wedding is a marriage. And marriage is an institution, not a party.”

Step Cancer

I am not alone. One of my worry what-if’s has to do with the fear of John’s cancer returning (Is it correct to say it’s gone? In remission? Hibernating? Officially you can’t say cured until five years but with colon cancer five years is half a miracle.) But with that recurrence a fear that I have is how that will play out with his kids. They opted to not be part of his life during the first year of cancer—they missed the surgery, recovery, recuperation, chemo, the pump and the ugly side effects and the skin, hair, feet, mouth, sleepless nights.

Now they are slowly—ever so slowly --returning to his life so if cancer comes back what role will they play? That little nagging bonus fear has given me some great hours of useless distraction. But shame being what it is I hardly wanted to admit I was having anticipatory resentments. But whoa—life lesson learned again: no one is ever the only one who has an experience!

In the Winter 2009 issue of CURE magazine there is an article called: “Uncertain Obligations: When Adult Children Care for Parents and Step Parents Who are Ill.” And there it is. Questions of divorce and blended families and how cancer and chemo become the acid test—the chemo test maybe?—of how successfully a family has blended –or not.

The author, Jo Cavill, writes about adult children reluctant to care for a natural parent because of divorce, unwilling to care for a step parent, the stress and strain between adult children and a new spouse sharing caregiving and the fights about both being the caregiver and not wanting to be the caregiver, and the supplementary issues raised by divorce and cancer: who makes medical decisions, how is money spent and who gets the money—if there is any left after cancer treatments—after the parent dies.

This is one of the best pieces that CURE has offered. It’s right in there describing real life and the scary realities of Love in the Time of Cancer.