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.