Thursday, May 29, 2014

We Get Deeper--a Benefit of Pain

On March 14  David Brooks wrote a beautiful column about how we find and develop depth in a life. WE all want depth, yes? BUt the things that depend us? Well, maybe not so much. But character, we ant that. And intellectual depth, we want that too. But "deepening" comes thru experiences that often are hard--disciplines and sometimes the discipline is illness or grief. These are processes we know in CancerLand. 

Here is a paragraph from Brooks March 14th column called "The Deepest Self":

So much of our own understanding of our depth occurs later in life, also amid suffering. The theologian Paul Tillich has a great essay in “Shaking the Foundations” in which he observes that during moments of suffering, people discover they are not what they appeared to be. The suffering scours away a floor inside themselves, exposing a deeper level, and then that floor gets scoured away and another deeper level is revealed. Finally, people get down to the core wounds and the core loves.

And here is the link to the whole essay in the New York Times:

Monday, May 26, 2014

Photographing Cancer

My friend Leslie travels a lot and she brings me stories from all over the country. Last week she gave me some pages from The Bangor Daily News which reported on Angelo Merendino's photo-documentary of his wife with cancer. He is a wonderful photographer and so the images are powerful and he was wise enough to pick up his camera early in their families' relocation to CancerLand.

Merendino describes the process from his wife's perspective and from his own. He says he began almost as a distraction, an escape,  and then as a way to go deeply into the cancer and his wife's experience. They were married in 2007. Her breast cancer was diagnosed five months later, and she died in 2012. Five years of marriage and cancer and photography. What a tragedy. What a gift.
I'm putting the link to the Bangor Daly News article below, and also a link to the foundation Merendino started to help others called, The Love You Share.

Beautiful photographs here:

Bangor Daily News story here:

Friday, May 23, 2014

Poverty Complicates Cancer

People living in poverty take a much harder hit from cancer.

One reason cancer is harder on people living in poverty is that they are diagnosed later in their illness. They have less routine screening and less preventative care. Yes, I know there are all those “free” screening tests available, but really, if you are poor, have a couple of kids, no car and work a part-time job you are most likely having to choose between milk, Pampers and the $6-9 round trip bus fare to go to a health center (and spend the day waiting) for your “free” test.

So you cross your fingers and wait. You take your kids to the doctor but you might put off your annual physical or a Pap test or Mammogram. Forget colonoscopy—who’s going to drive you home?

So it takes a lump or some bleeding or some significant pain to get your attention and by then things have advanced.  And then, even after that things are still different if you are living in poverty.

Because Caregiving is Different for People in Poverty in CancerLand

When I hear caregiving discussed—and that’s a lot now that the Boomer Bump has descended, I hear us talking about caregiving as a separate social issue from poverty. We often picture caregiving scenarios that involve older folks with a well spouse caring for an ill spouse, or an adult child taking care of an aging parent. Occasionally we extend that picture-story to those caring for someone with cancer.

But caregiving is also a poverty issue and even those who are poverty advocates frequently ignore it. The economics of caregiving are a big part of caregiver stress for all families. Part of the blind spot is that we rarely see past the crisis that initially throws a family into caregiving. We worry with them through the cancer diagnosis, the surgery gone wrong, the ICU, the nursing home. 

But even for middle-class families or working class folks poverty begins after chemo is complete and after the ICU and after the discharge to home. In most serious illness caregiving situations both adults have lost or decreased their employment—one to illness and one to caregiving. Very few families can absorb one lost income, even fewer can lose two.

Here are some stats from the National Family caregivers Association:

Women who are family caregivers are 2.5 times more likely than non-caregivers to live in poverty and five times more likely to receive Supplemental Security Income (SSI).
Study conducted by researchers at Rice University
and data compiled from the Health and Retirement Study
funded by the National Institute of Aging and conducted by the University of Michigan, 1992-2004
Caregiving families have median incomes that are more than 15% lower than non-caregiving families. In every state the poverty rate is higher among families with members with a chronic illness or disability than among families without.
Disability and American Families: 2000, Census 2000 Special Reports, July 2005.

During the 2009 economic downturn, 1 in 5 family caregivers had to move into the same home with their loved ones to cut expenses.
Evercare Survey of the Economic Downturn and Its Impact on Family Caregiving;
National Alliance for Caregiving and Evercare. March 2009

We also forget to extend our thinking the other way. Illness doesn’t discriminate so how can families in poverty cope with the chronic impact of stroke, heart attack, or cancer—which has rapidly become a chronic disability.

People living in poverty generally can’t attend Cancer Clubs or Chemo Yoga Class and they don’t have friends to drive them to treatment a couple of times a week. In most cases the friends of people living in poverty also live in poverty so there is much less social networking to arrange those those extra meals or provide rides. Women living in poverty generally don’t have women friends with adequate vacation time to take a day off from work for wig shopping.

Our romantic ideal—and what has been my reality and maybe yours too if you’ve had cancer—is being surrounded by friends and family who help you. We had an amazing team of helpers for John—meals, rides, laundry, errands. And one of the reasons that happened is that we have a lot of friends who drive, who have time to cook, (and kitchen appliances), and who have jobs with lots of flexibility, and discretionary income.

Those of us who have had cancer—or a loved one with cancer and were able to do it the middle class way  (just consider the relief of having a car) have to be grateful for those extra blessings. And then we have to figure out what we can do to give a lift to those who don’t.

Saturday, May 17, 2014

Busting Cancer Kid Stereotypes--Before the Movie

You have by now seen a coming attraction or an ad for the move, “The Fault in Our Stars.” It will be a top summer movie and likely in the category of chick-flick, or teen heartthrob blockbuster. But I urge you—before the movie arrives—to do the old-fashioned and very smart thing and read the novel first.

“The Fault in Our Stars” was written by John Green and technically (arbitrarily by publishers) it is categorized as a “YA” or Young Adult novel. Most likely it got that designation because the three lead characters are under 18. But I assure you this is a very adult story because it deals with the most important adult issues: Illness, healthcare, language, love and death.

I have a feeling that the movie version will be very good, and that the filmmakers have done their best to be true to this story but it’s a novel and a novel about language and ideas and feelings so there is a lot in the book that will not make it onto the screen. So for that reason, please read the book now, before everyone starts talking about how much the movie made him or her cry.

If you read the book you too will cry, I think, but you will, I am sure, also think—and think a lot.

No spoiler here: it’s a story about cancer. Here we are in Cancer Land after all. But this is a story about how we think about cancer and how we think about death and how we think about (and talk about) people who have cancer. They had me at “there is no battle”. And extra points for  discovering what the book title means.

Check it out today. Your local independent bookstore has it and so does your public library, and this is also a great book on CD if you like your literature in the car.

Here is more on the amazing John Green:

Monday, May 12, 2014

Until I Say Good-Bye

In my last post I wrote about the intimacy of sex and keeping that intimacy alive in CancerLand. I believe that staying sexual and sensual is important to keeping the lines of communication open. Yeah, many experts will say it’s the other way around but I have found that when the bodies keep touching erotically and when you are laughing together in bed, the rest of the conversations—good, bad and ugly-- will follow.

Today I’m reading about another kind of intimacy that couples face in serious illness. My mother-in-law Anne recommended this week’s book, published in 2013. The book is called “Until I Say Good-Bye—A Year of Living with Joy”. It was written by Susan Spencer-Wendel. Susan was an award-winning journalist at The Palm Beach Post until her diagnosis with ALS (Amyotrophic Lateral Sclerosis) also known as Lou Gehrig’s Disease—the incurable, always fatal degenerative disease.

Spencer-Wendel was in her early 40’s with three young children when she was diagnosed, and because of those children, she spent her last year writing about her life, her illness and them. The book details her travels with her children and the deliberate, memory-making adventures she planned with each one. One trip entailed taking her 14-year-old daughter to New York City bridal showroom so that she could see her daughter dressed as a bride.

Sweet stories, yes and poignant as can be, certainly but Spencer-Wendel also writes directly and graphically about what happened and what didn’t happen between her and her husband—how sex worked and how it didn’t and about the day she finally had to ask her husband to wipe her after a bowel movement.

Somehow we all know that “toileting” is a caregiver issue, but most of us imagine that as something that old people face and deal with. Maybe we think we won't care when were old or maybe they won’t care. I’m not sure why we think that, well maybe denial is why, but we do.

But here is a vibrant but slowly disabling woman who is still a journalist, mom, friend and partner and she can no longer manage the bathroom. It was awkward and uncomfortable and her husband gagged and held his breath, and they had words about it. And then she went back to her laptop and her writing.

That too is physical intimacy. Maybe tender and caring but maybe also embarrassing, smelly, sticky and difficult. That kind of head-on honesty is what I love about this book and what I admire about Susan Spencer-Wendell for documenting her year and its full-out joy. She is proof that it can be done.

The book is called “Until I Say Good-Bye”.

Tuesday, May 6, 2014

Surrender to Being a Good Lover

You know that I love reading, and that I love reading –and talking—about sex.

The newest book on my bedside table is called, “The Ecstasy of Surrender” by Judith Orloff, MD. Doctor Orloff is a fascinating physician. From the start of her career she has been practicing a combination of Western, Eastern, Alternative and Energy medicines. She is a clinical professor of psychiatry at UCLA.

This new book promises to be a bestseller just as her first book; “Emotional Freedom” was a New York Times Bestseller for several years. In this new book she is writing about all different types of surrenders we can practice—with family, in the workplace, with communication, aging and yes, as lovers.

In Chapter Eight Orloff offers this list of the Ten Qualities of a Good Lover:

1 You’re a willing learner.
2 You’re playful and passionate.
3 You make your partner feel sexy.
4 You are confidant, not afraid to be vulnerable.
5 You’re adventurous and willing to experiment.
6 You communicate your needs and listen to your partner.
7 You make time and don’t rush.
8 You enjoy giving pleasure as much as you enjoy receiving it.
9 You’re supportive, not judgmental.
10 You’re fully present in the moment with good eye contact and can let go.

Yes, I do think it takes a lifetime to learn all that and to bring it to bed consistently. But hey, what a set of skills to keep practicing. I’m keeping this mini inventory nearby as a reminder to keep surrendering. Before, after and through cancer and illness we can keep sensuality and pleasure alive.

Saturday, May 3, 2014

Living in the Land of Limbo

Every year I teach a class called the Literature of Caregiving where we look at fiction and poetry and plays that touch on caregiving and cancer, and relationships that are changed by illness.

I’ve compiled a long list of books and it is fun to ask other readers what books –that are not self-help or advice—they like that have given then a picture of what it means to be a caregiver or what happens to a relationship when serious illness enters the story.

It has been said that there are only two stories: “A Stranger Comes to Town” or “A Man Goes on a Journey.” Think about it; think about your favorite movie or work of fiction. Then think about cancer: Yes, someone is going on a journey and yes, it’s also true that scary cancer has come to town.

Then consider Alzheimer’s: indeed a stranger comes to town. And for both cancer and Alzheimer’s and every other serious illness: the caregiver is going on a wild and hairy journey.

Now there is a new book that has collected stories of fiction that depict the difficulty of caring for a loved one with a serous illness.

This new anthology called “Living in the Land of Limbo.” The editor is Carol Levine, director of the United Hospital Fund’s Families and Healthcare Project. Levine has organized this anthology by type of relationship: children of aging parents, husbands and wives, parents and children, lovers and friends and even paid caregivers. She includes wonderful stories from Raymond Carver, Rick Moody, Lorrie Moore among other great writers.

This is a book for you the caregiver, you the patient, you the friend and yes, you the healthcare provider. All shame and euphemism are removed. Here illness and caregiving are as real as they can be because, of course, that is what fiction allows.