Wednesday, December 31, 2014

A Poem for New Year's Eve

We were alone one night on a long
road in Montana. This was in winter, a big
night, far to the stars. We had hitched,
my wife and I, and left our ride at
a crossing to go on. Tired and cold—but
brave—we trudged along. This, we said,
was our life, watched over, allowed to go
where we wanted. We said we’d come back some time
when we got rich. We’d leave the others and find
a night like this, whatever we had to give,
and no matter how far, to be so happy again.

                                                     ---- William Stafford

Friday, December 26, 2014

The Cost of Cancer

Money--perhaps the most taboo subject culturally. Yes, we only talk to some friends about our sex life, and maybe with very close friends, we talk about our faith life or our prayer life--that is such intimacy, isn't it? But the thing we share the least? Our financial lives.

Just think about that. Think of three of your really close friends. You may know who is having sex and who isn't anymore, and occasionally who likes what. But do you know how much money your friends make? or their partners make? or how deep their debt is? Who has family help? You might guess at those things but rarely do we know financial details of our friend's lives.

This is also true in CancerLand. And that can be devastating. The cost of cancer  care is steep. Even with insurance the copays can break a family. And when cancer goes on and on--as it does more and more often now--the cost can use all resources including savings and retirement funds.

This is something worth thinking about--and talking about. But you'll see in the attached article that many folks worry about talking about money with their doctors because they fear changes to the quality of their care.

Click on the link below to read more. Share this post with friends who have cancer or who care for those who do. Let's open this last box of secrets in CancerLand. Let's reduce the fear and anxiety around money that is an additional cost and worry.

Tuesday, December 23, 2014

Cancer at Christmas: A Post From Christmas Past

Years ago it was cancer at Christmas. The first surgery. The news about chemo. Having hope at the holidays. I found this blog post from Christmas Past tonight and I’m sharing it here. It’s good to remember that we were able to be so be happy even then, even in the thick of it, and that we found serenity and sensuality even in those first few steps into CancerLand.

Here is the old post:

“It’s all here. Love and carols, candlelight service at the United Methodist Church last night, sleeping late and making love through the morning, a sponge bath then washing his hair over the side of the tub—he cannot get the stitches wet for three more days—a walk in the neighborhood, opening gifts—books and music, and tickets and clothes for both of us. These are the things we have shared and talked about from the first day we met. Cashmere and satin and a collection of erotic poetry keep the love alive. We cook dinner together: Cornish game hens with smooth small breasts, artichokes to slide through our teeth, potatoes soaked with butter and garlic and chocolate mousse. Christmas together. We never thought we’d see this. But here it is. We have both cancer and Christmas and it is enough.”

This year’s Christmas Eve is a little different: Adopt-a-Family gifts, cooking, wrapping, (cursing the tape dispenser), texting the kids, cajoling the siblings, turning off the phone for private sensual solitude. Both of us laughing; we are this grateful.

Tuesday, December 16, 2014

Doing Battle with Cancer is Not Helpful

We have used this metaphoric language for so long that we may forget to ask if it is helpful. Often the war and battle language is used to motivate patients. And even in obituaries we read about winning and losing the war/battle/fight/with cancer.

But according to a research report by David Hauser at the University of Michigan, it turns out that, “Exposure to metaphoric language relating cancer to en enemy significantly lessens the extent to which people consider cancer-prevention and health promotion behaviors.”

This is so interesting. The power of language and the reality of unintended consequences.

What Hauser determined is that hearing the “metaphoric utterances” (he’s an academic) changes the way we think of the disease. “When we hear the phrase “Win the war on cancer,” it forces us to think of cancer as an enemy that we are at war with.” Well, yeah.

But his crucial point is this: War and battle language emphasizes taking aggressive action against cancer. But, most cancer-prevention behaviors, such as changing diet, curbing alcohol intake, limiting salt and not smoking involve “limitation and restraint.” Not fighting. Hence, according to Hauser, enemy metaphors de-emphasize those kinds of beneficial preventative behaviors and actually hurt people’s willingness to engage in them.

Kind of like, “If I had to I would kick cancer’s butt, but I’m not going to just use less salt.”

Here’s Hauser: “Constant exposure to even minor metaphorical utterances may be enough to make enemy metaphors for cancer a powerful influence on public health, with unfortunate side effects.”

Wow—there is the power of words, and the danger of words-even words used with positive intentions.

*The full study will be available soon in a future issue of Personality and Social Psychology Bulletin.

Monday, December 8, 2014

The Literature of Caregiving: "Home" by Marilynne Robinson

I have been a caregiver for more than 30 years, and for the past ten years I have been coaching family caregivers. A couple of years ago I created a class called “Caregiving 101” to reach family caregivers in community centers, faith communities, and in workplaces.

What I’ve learned is that one of the biggest supports for a caregiver is hearing about how other people cope in their caregiving. We can learn from the good and the bad, from the “Do” and the “Don’t”, examples of how other people approached, struggled and survived their caregiving role.

In caregiving classes and support groups we hear poignant stories directly from current caregivers. But there is another way to share in these caregiving stories and that is from reading literature.

In the midst of my own caregiving I found myself leaning into the experiences of poets, novelists and those who write literary nonfiction, (essays and memoir as opposed to self-help books). Today my caregiving bookshelves have an equal number of advice books and works of literature—all guides to me on the practices, methods, strategies, and emotions of caregiving.

A few years ago I began teaching a class—for caregivers and for writers—called “The Literature of Caregiving.” Today, here at “Love in the Time of Cancer,” I am starting a new series on the literature of caregiving. Once a month, or maybe more often, I’ll introduce a novel, story or poem that offers a perspective on caregiving.

I hope you’ll enjoy these voices and that they will be helpful to you.

In caregiving literature we are often talking about pain, suffering, grief, or family dynamics, which we all know, complicate the day-to-day stress of caregiving.  Some works of literature in the caregiving genre can also be classified also as works of “narrative theology”—where there are underlying questions of meaning,  “What does all this mean in a bigger sense?” and “What wisdom do these stories offer about how I should live my life?”

I’ve chosen Marilynne Robinson--one of America’s great modern authors to lead this new series. Her books land on the best-seller list with each publishing, and they have the wonderful dual quality of holding their own as great page-turning fiction as well as having deep, deeper and deepest layers should you want that kind of read as well.

Maybe you recall some of her books, which were published in this order:
“Housekeeping”—which was also a wonderful movie, then “Gilead”—which won the 2004 Pulitzer Prize, then “Home” in 2008 and most recently, “Lila”. All of Robinson’s stories are set in Iowa—where Robinson lives. And each of her books centers on the joys, sorrows and struggles of one or more family caregivers.

In “Home” (2008) Robinson gives us Glory Boughton, age 38, who has returned to Iowa to care for her dying father. Glory has her own struggles that her father isn’t aware of. Glory’s brother Jack—gone 20 years—arrives home as well but not to help out but rather because, as we slowly learn, Jack needs a lot of tender care as well. Critics have called Jack Boughton one of the “greatest characters in recent American literature.”

Robinson’s writing and story telling is extraordinary. She uses a kind of page-turning prose that can seem so simple until you realize pages later that she has delivered complicated relationships and even more complicated emotions to us so gracefully.

Glory and Jack’s father is a retired minister so there is a family language of faith that both Jack and Glory wrestle with as they wrestle with each other. While the theology belongs to their pastor father, Glory is being tested in every way: emotionally, financially, physically and theologically.

Robinson’s other books all have caregivers as lead characters: an eccentric aunt in “Housekeeping”, a husband and wife in “Gilead” and a surprising friend in 2014's “Lila”.

While these stories are serious and important Robinson’s skill is also in making them enticing page-turners, so even the most tired caregiver will enjoy keeping Robinson on the bedside table, or in the bag that goes to and from appointments. 

I’ll return in a few weeks with another entry into our new canon: The Literature of Caregiving. I’d love to have your feedback and your suggestions too. This can be our virtual book group or we’ll be caregiving friends sharing a great read.

Sunday, November 30, 2014

Can a Funeral Be Inspiring?

We went to a great funeral on Saturday. Ron was an old friend of John’s, and he was a man who  taught that taking risks for love was worth it. He knew it firsthand and he was there when John needed support.

But his funeral—is it weird to say that a funeral is great? This one was. Ron knew his prognosis long ago and he had an accurate count-down, so he had some time to plan his dying. That can be good news or bad I guess, but the plus to knowing that you are dying is in being able to plan. It’s rare to be at a funeral for which the dead person planned the entire event and this was that funeral: the music, readings, even the eulogies were under his influence. And they were stunning.

It raises this question for me: Who is a funeral for? Is it for the person who died? for the family? Is it a final way to communicate our values and beliefs--even our taste in music, art, literature? Our personal theology? Or the spiritual needs of the people in the pews?

I go back and forth on this. I have two funeral files, one for John and one for me. Is that about being well organized or crazy controlling? Is it thoughtful? I like to think no one will need to guess at my favorite poems, hymns or what should be in the handouts. John's file lets me anticipate how crazy grief will make me and gives (probably false) assurance that I'll be able to choreograph his funeral in a way that will convey his taste, intellect and humor. But, really. Isn't that a lot like my childhood mantra of "What if…?" that I used over and over to provide a false feeling that preparation would protect me?

Can a funeral be inspiring, funny and creative? Ron's was. It reflected the man who had lived. He had two marriages, two kids, dozens of jobs and thousands of friends. And what most inspired were his adventures. He was one of the most adventurous, fun and spontaneous people. And that has left its mark.

On the long drive home we talked about making more adventures, taking more risks, being more spontaneous and embracing silliness in our day-to-day.

That’s the good we can take from death—from someone else’s and from our own impending dying. Ron’s death reminds me to keep death nearby as my guide and friend who can whisper to me many times each day, “Time is short; what are you doing?” "Are you living and laughing and having adventures now?" Can we put our intellect, taste, passions and humor into each living day so there is less need to demonstrate all of that later?

Wednesday, November 26, 2014

Gratitude Poem Raymond Carver

 There has been a lot of interest in Raymond Carver  recently because of the new film, "Birdman" which is about a Broadway production of one of Carver's short stories.  Here is a beautiful poem--perfect for Thanksgiving --also from Raymond Carver near the end of his life:

 No other word will do. For that’s what it was. Gravy.

Gravy, these past ten years.
Alive, sober, working, loving, and

being loved by a good woman. Eleven years

ago he was told he had six months to live

at the rate he was going. And he was going

nowhere but down. So he changed his ways

somehow. He quit drinking! And the rest?

After that it was all gravy, every minute

of it, up to and including when he was told about,

well, some things that were breaking down and

building up inside his head. “Don’t weep for me,”

he said to his friends. “I’m a lucky man.

I’ve had ten years longer than I or anyone

expected. Pure Gravy. And don’t forget it.”

                                    --Raymond Carver

Wednesday, November 19, 2014

Girls Just Want To….Be Women Who Can Talk About Sex

This past weekend I led a spiritual retreat for women in recovery. We talked about everything that goes with recovery: addictions, relationships, support groups, transferring addictions, “positive addictions”, prayer and God and faith and how to keep on growing and changing.

We also talked about things that women talk about when they get together: food, eating, bodies, health, shopping, shoes, money, men, partners, work, kids, careers, skincare and sex. Yes, sex.

I found myself leading a late night session about sex and aging and we talked about some of the things no one tells us about owning a female body in mid-life. What I loved about that session was that we laughed, and cried and held such a safe space for each other to talk intimately about our sexual needs and sexual dilemmas. It felt truly sacred to be with these women so openly and with so much vulnerability.

That experience triggered a memory from my childhood, which I now realize, is what gave me the confidence to create my own positive sexuality-and maybe also it gave me courage to help other women, and couples. Here is what I remembered about my mother:

When I was about 10 or 11 my mother gave me those little booklets from Kimberly Clark about my changing body and about menstruation. They were pretty risqué I guess even though they showed no actual body parts and never, ever mentioned sex at all. But just the reference to “maturity” and fallopian tubes was a big deal.

After that my mother, Florence, talked to me often about the feelings—the emotional and physical feelings—that were going to come to me as I developed physically. She told me about sex and intercourse and how babies were made yes. But she also talked about desire and the sensations I might encounter when I was attracted to a boy. No, she did not use the word orgasm, that would not have been in her vocabulary, but desire was and she wanted me to understand that desire was not a “Boys Only” experience. She wanted me to understand that I would certainly have physical desire and sensations because she didn’t want me to be surprised when that happened.

Later, when I was in my twenties my mother talked to me about this and she let me in on conversations that she had been having with the mothers of my little girl friends. Florence told me that it infuriated her when she heard women tell girls things like, “Those boys just want one thing” and “Your job is to keep a boy from touching you” and “If a boy touches you it’s all for him and not for you.”

My mother, now I realize how smart she was, told those other mothers, “You are lying to your
daughter, so the first time she feels a crush or a sensation of desire when she has a hug or kiss with a boy she will conclude one of two things: That she is a freak or that you are a liar. And if your daughter thinks you lied about feelings of desire then she will not believe the important things you told her about love and caring and deserving respect. You will have lost her trust.”

My mother told me that I would feel desire and that I might want some of that pleasure but that I would say no. Not because it was all for the boy but because I would care about myself, and I’d be careful with my feelings, and I’d want to have a good reputation. And yes, truth be told—I did hear about the milk and the cow and what happens if it is free. J

This weekend at the podium, talking to women about their bodies and self-care and the timing of female sexual response, I was recalling Florence and finally appreciating what an unusual and helpful mother I had. 

Sunday, November 16, 2014

Thinking Through Screening and Diagnosis

It began with prostate cancer screenings and mortality studies. Then there was deeper research on breast cancer--early diagnosis and what it means, could mean, might not mean.

Now Gina Kolata writes in this week's New York Times about ways of examining the impact of increased screening versus mortality, and the complicated issues of how we should respond to diagnoses.

The cancer in this story is thyroid cancer--seemingly on the increase in Korea--until you look at the screening and diagnose numbers versus mortality numbers. Is there more cancer or more diagnosed cancer? And in the case of thyroid cancer--like prostate--is the treatment and possible debilitating effects of the treatment worth it given that mortality rates are not changed.

What Kolata describes very well is how complicated all of this is--and at the very time that we have shorter meeting times with doctors and specialists. What's a human being to do?

Do take a look at this and yes, share it with others. We all have cancer; we all have cancer cells in us at all times. So as screening techniques improve and become more refined will we all soon all have "diagnosed cancers"? That's a scary thought--in so many ways.

Here's the article from Gina Kolata. Link below:

Tuesday, November 11, 2014

Death is Visiting

Death has been hanging around this week. He’s sitting on the windowsill smoking a cigarette. Whenever I come in or out of the house he just nods and says, “Hey.” I know why he’s here.

A friend’s husband has died. Joe had Alzheimer’s for ten years. Finally, death…but still, death. Another friend of John’s—maybe two weeks to live or maybe four?  John hasn’t seen him in years so he drove to Worchester this morning to say hello, and “Good-bye” after all this time.

And death nods.

And yes, it’s Veteran’s Day. On NPR I hear a mother and father interviewed about the way that they learned of their son’s death, and their experience of going to Arlington this week to see his grave for the first time.

And tomorrow Annie will go to the Saratoga National Cemetery to bury Joe.

And death sees me coming and going and listening and dressing. He puts out his cigarette on the sill, and just nods.

Saturday, November 8, 2014

What We learn about Healing from Older Teachers

And I mean much older...

I am getting ready to teach a class on Carl Jung next week and going through my materials I find a section that I wrote years ago on the importance of not shrinking from pain. This was, admittedly, before cancer but I think it still applies.

Jung, in talking about why we become neurotic talks about going toward pain, "go toward the thing that scares you" etc. Jung, of course split from Freud over the issues of spirituality in healing and personal growth and he believed that we had to integrate our shadows/pain/fears rather than annihilate them.

In one place he says, "God comes through the wound." I love that. But I loved it even more when I read on and learned that Jung was borrowing from Julian of Norwich who said, "Our wounds become our trophies."

I think, maybe, that is the true essence of celebrating survivor-hood. It is the integration and the god/good in us coming through the wound that is being celebrated rather than "I kicked cancer's ass."

What do you think?

Wednesday, November 5, 2014

Cancer at The Movies

As I have said before,  life in cancer and caregiving is not a made-for-TV movie. Few films capture the reality of living with --and dying from-- cancer. It is true that a visual medium is challenged to represent what is so very internal and subtle: all the waiting, in inconclusiveness of diagnosis, the boredom of chemo, eating lasagna, throwing out the lasagna that someone with mouth ulcers can’t eat, the sleeping and napping, and of course the ordinariness of what cancer is.

No, movies need drama and they need visuals so the cancer movie clichés are: getting the bad news from the doctor, telling the kids, losing hair, crying –a lot of crying, the moments before surgery, the recovery room, the death bed last words and the absolute misrepresentation of what actual death looks like.

But there are movies that give us better and worse depictions of cancer and caregiving. The one we laugh at most maybe is Love Story, based on the all time best/worst clichéd Chick Flick-before –its-time: "Love Story" by Eric Segal. The story and movie would not have been so memorable except for the two young actors in the lead: Ali McGraw and Ryan O’Neal who discovered that love means never having to say you are sorry you made this movie and therefore doomed all women with cancer to feel bad for not dying beautifully—and so well-dressed.

But still….cancer is part of life. We all have cancer (see earlier blog posts for the science on that) and we all know someone with cancer, and a lot of us fear cancer so yes, it's a great movie topic.

This week we watched the latest, sweetest and touchingly new cancer movie: “The Fault in Our Stars” based on the Young Adult novel by John Green. And I can absolutely recommend both the book and the movie to you.

It did—because the cast is young and beautiful –make me think of "Love Story" but with more fun, less smarm and better dialogue.

So here are my top ten favorite cancer movies:

     1* The Barbarian Invasions
     2* The Fault in Our Stars
     3* Love Story
     4* Terms of Endearment
     5*  50/50
     6* Wit
     7* Sweet November
     8* My Life Without Me
    9* Erin Brockovitch
    10* Stepmom

What are yours?