Ribbons for Caregivers?

This week I participated in a great seminar on cancer and caregiving presented by the organization To Life! Tons of new information on genetic testing and hormone replacement therapies. Answers to the questions you didn’t even know that you wanted to ask. But it was –again—the conversations with caregivers that blew me away. How much life caregivers spend without even knowing how deeply they are committed or how much it might be affecting their life and health.

I always think that people must know the impact of caregiving and then each time I talk to a group it’s there again: caregivers are working fulltime, raising kids, caring for at least one elderly parent and a spouse or partner with cancer. And they are apologizing about some part of their life they are not doing well: missed a friend’s birthday; haven’t followed international news; missed a new movie. And the big thing they are skipping is attention to their own healthcare and that has disastrous effects for the caregiver and the family.

Caregivers skip annual physicals, mammograms, blood tests, dexascans, teeth cleaning, medication monitoring. Nobody wants to go to another doctor when you are actively caring for someone with cancer—you see far too many medical waiting rooms—with awful magazines and terrible TV—and so caregivers get sick.

We know that breast cancer is hard and colon cancer is hard and lung cancer is hard but caregiving is hard too and mostly it goes unacknowledged by medical professionals even though there are big medical consequences.

So, what color is the ribbon for caregivers? Should it be a rainbow because caregiving encompasses every serious illness? Or should the caregiver ribbon be clear plastic because caregiving and its consequences are still invisible?

A Free Workshop for Women Concerned with Cancer--- & Caregivers

To Life! Presents... Beat the Odds
A Workshop with Breakfast and Presentations for Women Concerned with Cancer—Patients and Caregivers.

This Wednesday in Saratoga Springs, New York:

Wednesday, August 10, 2011  at the Gideon Putnam Resort

24 Gideon Putnam Rd, Saratoga Springs

Breakfast at 8:00 am Presentations to follow at 8:45 am

The Role of Genetics in Cancer Diagnosis & Treatment

Presented by Luba Djurdjinovic, Executive Director of the Ferre Institute

Hormone Therapy—What is Right for You?

Presented by Dr. Vinita Singh, Medical Oncologist at Samaritan Hospital Cancer Treatment Center

Caregivers: Perspectives on Caring for Your Loved One

Presented by Diane Cameron Pascone, Times Union columnist and teacher of caregiving courses

To register call To Life! at (518) 439-5975 x22, or e-mail lglavin@tolife.org.

Cancer Is Not Your Only Job

Here is a great resource when cancer is not your only job. Many of us are managing cancer and work--fulltime, parttime, all the time. CancerandCareers.org has advice on the law, practicalities around workplace communication, talking about your cancer during a job search and lots of guidnace on how to keep and manage your job--and your career--with cancer.

Lots here for cancer caregivers too.

Click below and bookmark this site in your favorites.

http://www.cancerandcareers.org/en?utm_source=google&utm_medium=cpc&utm_term=cancerandcareers.org&utm_content=Cancer+and+Careers+Org.&utm_campaign=CAC_Branded_GRANTS+Account

The Big C

We are watching the first season of the TV series “The Big C” starring Laura Linney. (Last seen as a family caregiver in “The Savages” with Philip Seymour Hoffman”). The Big C is wonderful, witty and thought provoking. And it hits every stereotype about cancer: the smarmy platitudes, the saccharine support group, the “cancer is a gift” message and the “your anger caused your cancer” craziness. Linney just explores and pushes back in the most wholly human and imperfect ways.

The premise of the show is great: What would you do if you were diagnosed with a late stage cancer and you knew and your doctor knew but there was some delay—weeks? months?--before anyone else knew. In that cocoon of time and spiritual space who would you become? What  would that secret knowledge let you try out before the expectations of “cancer patient” surround you?

Evening Gatha

In Zen Buddhism a gatha is a song or hymn that is chanted as part of one’s practice. This evening gatha was a gift from a friend. It hangs in my bathroom.

Evening Gatha:

Let me respectfully remind you~
Life and death are of supreme importance~
Time swiftly passes by, and opportunity is lost~
Each of us should strive to awaken…..
.....awaken
Take heed. Do not squander your life.

Workshop for Women Cancer Patients and Caregivers August 10th

To Life! Presents... Beat the Odds

A FREE Workshop with Breakfast and Presentations for Cancer Patients and Caregivers.

Date: Wednesday, August 10, 2011

Location: Gideon Putnam Resort
24 Gideon Putnam Rd, Saratoga Springs, New York

Time: Breakfast at 8:00 am Presentations to follow at 8:45 am

Tpoics and Panels:
The Role of Genetics in Cancer Diagnosis & Treatment
Presented by Luba Djurdjinovic, Executive Director of the Ferre Institute

Hormone Therapy—What is Right for You?
Presented by Dr. Vinita Singh, Medical Oncologist at Samaritan Hospital Cancer Treatment Center

Caregivers: Perspectives on Caring for Your Loved One
Presented by Diane Cameron Pascone, Times Union columnist and teacher of caregiving courses

Pre-registration is required by August 7, 2011.

To register call To Life! at (518) 439-5975 x22, or e-mail lglavin@tolife.org.

A Broken Toe

It’s the little things not the big ones that test my humility and self-concept. I made it through cancer, caregiving and blended family craziness, but last night completely lost it over my little toe.

I broke my toe. I was rushing and turned quickly and tripped over John. (I’ll let my therapist sort out the deeper meaning of that.) I went down howling at the sharp pain but came up sobbing that “I don’t have time for this right now.”

You would think that I have had so many ways in the past few years to learn that life happens when you are making other plans, but my ego insists she will have her way. I’m laughing at myself, and I’m not. I see in this how hard it is to take care of myself, to accept life on life’s terms and to just be human.

Chicago

I’m home now from Chicago. A wonderful vacation in a new city with an old friend. I met my friend Brigid in Chicago and we had art, culture, shopping, and endless talking about our lives. Brigid and I know each other 30 years but we haven’t lived in the same city for the last 15. Earlier this year it seemed that the friendship would break from the distance and changes in our lives. We were young, single women together in Baltimore and shared passions for art and food and self-improvement.

In Chicago we went to museums, the symphony in the park and walked Michigan Avenue until our feet burned. Then we went to the Nordstrom shoe department for relief. And we talked nonstop about how our inner lives had improved and the parts that still resisted change. We swapped names of therapists, gurus and self help books.

It also felt good to go away alone—to have all that quiet time in travel---the good news of long waits in airports is that it gives me a huge amount of quiet and solitude and that really feeds my writer/creator self. I was delighted to find that Chicago’s Midway Airport has a Chapel and Spiritual Center in the airport. I went there to pray and meditate and be still.

Do Not Disturb

On my office door I have one of those hanging cards from a hotel that you attach to the doorknob to advise the housekeeping staff of your wishes. This one, from a hotel in Toronto, says “Do Not Disturb” on one side. On the flip side of the card is the same phrase in French—“Ne pas deranger”. But, as my husband pointed out, the literal translation of this phrase in French is, “Do Not Derange”. I love that. It’s fair warning to anyone in my life.

Sleeping with Bread

A favorite book of mine is called, “Sleeping with Bread” by Dennis, Sheila and Matt Linn. It’s about a simple discernment process that the Linns teach—helping us to see what matters and what brings us joy.

My favorite part of this book is the story that gives the book its title. This is the story:

“During the bombing raids of World War II thousands of children were orphaned and left to starve. The fortunate ones were rescued and placed in refugee camps where they received food and good care. But many of these children who had lost so much could not sleep at night. They feared waking up to find themselves once again homeless and without food. Nothing seemed to reassure them. Finally, someone hit upon the idea of giving each child a piece of bread to hold at bedtime. Holding their bread, these children could finally sleep in peace. All through the night the bread reminded them, “Today I ate and I will eat again tomorrow.”

I love everything about that story –the problem and the simple solution. I can relate to the persistence of old feelings and fears—and how any kind of deprivation can cast a long shadow.

Each time I read it I ask myself: What am I trying to hold on to now to meet a need that was in the long ago past? Are all my shoes a kind of “bread”? Old relationships? Old ways of relating to others? And what new bread might I ask for and hold instead? Bread is a spiritual metaphor in every faith—so what “bread” can I hold onto instead of shoes, scarves, resentments, fears, jealousies and my own cozy ego?

Cancer Doesn't Correlate

We so badly want cancer to be caused by something other people do that we don’t. She used to smoke. He eats so poorly. She’s a worrier/has a lot of anger/doesn’t express feelings. He was always in the sun. Maybe it’s a family thing? Was there cancer in his family? Didn’t her sister have cancer?

It’s our voodoo hope. “If I don’t do the things the things they do I won’t get cancer.”

But no, cancer doesn’t correlate.

Infidelity Keeps Us Together

That’s the title of yesterday’s cover story in the New York Times magazine. Mark Oppenheimer writes about sex columnist Dan Savage and Savage’s suggestion that marriages need less fidelity and more flexibility. Basically what Savage is suggesting is that monogamy isn’t quite natural and that we do relationships a disservice by pretending or insisting that absolute monogamy be the standard.

What’s good is that Savage is not espousing secrets or affairs or running around—rather he’s advocating for talking to your partner before, after, and during marriage to say, “This is who I really am; what I really want; and “Will you still love me if I need to try this out?” In a way, he’s talking about a very high form of commitment.

But just the title and then reading the article was disturbing. (Click on the link below to read the article). Right away I found myself asking, “What if John said he needed something –some kind of sexual experience—I couldn’t offer or even try?” Would I love him enough to say, “Ok, go be you?”

I doubt it.

In the article other experts on sex and marriage weigh in to say that some open marriages work but most do not—not because of the sex but because of the emotions and the dishonesty—again, not the dishonesty of the partner who needs to go outside the relationship but the dishonesty of the partner who agrees or acquiesces and then realizes they really are not OK with that.

But then the bigger and more personal question to myself is this: Do I have the right to want and insist on monogamy and fidelity in our marriage? This is a marriage that came to be from infidelity—so did I forfeit my rights by marrying a man who left his wife? Or do we painfully know just how high the cost is and not wish that on ourselves or on any others?

Reading this article provoked a deep and daring conversation with John about our love life and our sex life and our intellectual lives—and how we keep all of those alive so we can keep things fresh and exciting. And what it means to be sexually “good, giving and game” in a monogamous marriage.

http://www.nytimes.com/2011/07/03/magazine/infidelity-will-keep-us-together.html

Pure Romance

In the Sex and Cancer workshop a few weeks ago I got to hear Vickie Yattaw, who is a Registered Nurse and Oncology Educator. She provided a lot of resources. One was the company, Pure Romance—a “sensuality toy company”. Vickie recommended some of their lubricants for women during and after chemo and cancer.

These products are, of course, great for women during and after menopause as well. So I went online to www.PureRomance.com to place my first order. I’ll keep you posted on the products—I bought one that is pretty basic and one that is described as “chocolate” and “tingling”. We’ll see.

But the best part of my little adventure on the Pure Romance site is the founder—Patty Brisbane’s -- blog called “Under the Sheets”. She writes about couples and communication. It is the most delightful thing to see sex framed in the context of good communication and good relationships.

http://www.pureromance.com/

Fighting for Us

This weekend we battled. All the ingredients were there: hungry, tired, bad traffic, a long car ride, a difficult family member, my expectations, his assumptions.

Later, after the swearing was over, we talked about what happened. I need to speak up. He needs to ask questions. We need to plan for the emotions that are provoked by family. I need to take it less personally. He needs to take it more seriously. We both apologized.

But still later, after the make-up sex was over, we talked again and came to this new idea: When we fight we need to fight for the relationship and not against each other. Yes, easier said than done in the heat of the moment, but a new idea, that makes us allies --even in war.

Spiral Worries

Ugh..the worries spiral. Work, relationships, work, relationships. When I’m sad I don’t want to work, when I don’t feel like I’m working well, I worry about losing my job, when I think I could lose my job I worry about what will happen to the relationship if I lost my job. The spiral goes faster until I cry or get so mad at him and me, mostly me.

I know that prayer and faith is the answer but I fight to trust God.

That feels like my task today: slow down and trust God. Even though it seems like the most counter-productive thing to do.

I don’t know where else to put this but in God’s hands. And when it gets—I get—like this it’s the most impossible thing to do.

Holding Our Own: Art and Death

Tonight in our class on Death and Dying we watched an extraordinary video called “Holding Our Own”. The subtitle is “Embracing the End of Life”.

This documentary is about fabric artist Deidre Scherer who creates fabric “paintings” from real life sketches of people who are dying. Her work is extraordinarily beautiful and her craft amazing in the ways she creates super-realism in portraiture using fabric. But the other beauty is her belief and philosophy about the role that death plays in life.

The second focus of this film is the Hallowell Chorus in Burlington Vermont. Hallowell is a group of amateur and professional singers that participate in Hospice in Burlington. They come to homes and hospitals to sing to and for people who are actively dying.

These artists speak about their feelings and beliefs about death and what they have learned about their own lives thru the experience of singing for and creating art with the dying.

This video was produced by Paul Newman and it’s available from Netflix or can be purchased on Amazon. It’s a fabulous intersection of creativity and death—which is to say generation-- or life and death.

Baseball and Safely Home

Sports, like religion, offer these consolations: A diversion from the routine of daily living; a model of coherence and clarity; a heroic example to admire and emulate, and a sense of drama and conflict in which nobody dies.

In baseball we begin and end at home. Home plate is not fourth base. Our goal in this game is to get home and be safe. Home is a concept rather than a place. Home implies safety, accessibility, freedom, comfort. It’s where we learn to be both part of and separate. The object in baseball is to go home, and to be safe.

When a runner charges home we lean forward to see the home plate umpire slash his arms downward signaling that the runner who may have crashed onto the ground in, in fact, safe. Isn’t that what we all want? I do. In my daily life I want whatever is bigger than me and whoever is judging me to see how fast I run and how precariously I slide and to say, as I slip and slide, “She’s safe!”

Those who believe, whose faith is strong, accept that umpire/God at his gesture and stand up relieved. Some, like me, despite wanting it are afraid to believe or struggle to trust. I have --over and over-- sensed that “safe” signal, but I am unbelieving. I run the bases again, skidding and scuffing. Again he signals, “Safe!”, but again I go to bat. What baseball offers that life does not is the agreement that we will believe it when we are told that we are home and that we are safe.

Courage Sex and Cancer

Tonight, for the first time, I feel like I really get what courage means in CancerLand.

I was part of a panel at The American Cancer Society Hope Club in Latham, New York. We were bravely and boldly discussing what sex is and can be when a partner has cancer or/and is receiving treatment—or what happens after treatment to men’s and women’s bodies.

Much of my perspective is represented on this blog—the crazy hunt for honest and frank information, my belief that sex is so important especially during cancer—that when a couple is faced with the pain and fear and just plain crap of cancer that a healthy sexual relationship is a way to keep love strong and to boldly defy thanatos—the death wish.

So I read and spoke to all of that. And then…

And then Vicki Yattaw, RN from the CR Woods Cancer Center spoke about sex and cancer. Oh my God—this was the sex talk that every woman wants to hear—with or without cancer Vickie had the info, advice, perspective and loving humor on everything from how to have sex in every possible way, during every kind of health crisis, how to boost your own libido and help a partner boost theirs, and even “BoBs”—battery operated boyfriends.

Her information blew me away. I thought I shocked the crowd by sharing my story of having to ask John’s oncologist, “Can I swallow?” (The doc didn’t know). Vickie not only knew—(wait 48 hours after chemo) but she explained how people with colostomies have sex (they do and it can be great) and how orgasms decrease nerve pain and make you look younger. Yes!

I’ll share more of her info here in the next few weeks. But I have to say now that the best speakers of the evening were the participants in the group: some couples and many singles who had or have cancer and who want a sexual life now and later. People spoke so deeply and honestly—because Vickie set the stage for all of us to use sexual words—and showed me that everyone—young or old, plain or pretty, coupled or not—want good sex lives.

And thanks to Tracy Pitcher, MSW—Director of The Hope Club and Vickie Yattaw RN—there is the start of open conversation about love—and sex!--in the time of cancer.

You Look Great and Other Lies

Click below to read a great article from today's New York Times on how to be a good friend to someone who has a serious illness:

http://www.nytimes.com/2011/06/12/fashion/what-to-say-to-someone-whos-sick-this-life.html?_r=1&pagewanted=all

Sex Ed for Cancer and Caregivers

Next Monday night The Hope Club (formerly Gilda’s Club) in Latham New York will host and evening of Sex and Cancer. It will be a panel presentation and open discussion about the anatomy, physiology, chemistry, etiquette, hope, fear and what real people really do when they make love in the time of cancer. I’ll be part of a panel that will provide information, education and lots of opinions and laughter too. And refreshments!

The panel includes Tracy Pitcher, Director of The Hope Club and Outreach for the American Cancer Society and Vickie Yattaw, RN—nurse educator—who does lots of education around sex and cancer. So bring a friend and come join the discussion.

Monday June 13th 6 to 8 pm at The Hope Club One Penny Lane—off Wade Road—off exit 6 of Route 87 Latham, New York

What the Living Do

Johnny, the kitchen sink has been clogged for days, some utensil probably fell down there.
And the Drano won't work but smells dangerous, and the crusty dishes have piled up

waiting for the plumber I still haven't called. This is the everyday we spoke of.
It's winter again: the sky's a deep, headstrong blue, and the sunlight pours through

the open living-room windows because the heat's on too high in here and I can't turn it off.
For weeks now, driving, or dropping a bag of groceries in the street, the bag breaking,

I've been thinking: This is what the living do. And yesterday, hurrying along those
wobbly bricks in the Cambridge sidewalk, spilling my coffee down my wrist and sleeve,

I thought it again, and again later, when buying a hairbrush: This is it.
Parking. Slamming the car door shut in the cold. What you called that yearning.

What you finally gave up. We want the spring to come and the winter to pass. We want
whoever to call or not call, a letter, a kiss--we want more and more and then more of it.

But there are moments, walking, when I catch a glimpse of myself in the window glass,
say, the window of the corner video store, and I'm gripped by a cherishing so deep

for my own blowing hair, chapped face, and unbuttoned coat that I'm speechless:
I am living. I remember you.


"What the Living Do" by Marie Howe

Memorial Day 2011

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

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

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

Gratitude

When I write the word “Gratitude”

I think recovery.

I don’t think “cancer”.

I think gratitude for him

for me, for this

--surely not this?

We are grateful or we are not.

We say Yes! and Thank you!

All around me well-meaning

friends say,

“You can say ‘No’!”

But I say Yes

I don’t No

Who knew…

“It’s like a relationship on steroids” I

told a friend

then realized

that was no metaphor.

Relationships and Cancer

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


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

Save the Date: Sex and Cancer

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

Monday June 13th --7 pm to 9 pm

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

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

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

Sex Education

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

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

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

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

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

Cancer101 Cancer Planning

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

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

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

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

 

Good Friday

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

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

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

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

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

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

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

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

The "C" Word

Oh no, oh yes…the “C” word again.

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

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

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

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

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

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

Love in the Time of Cancer

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


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

Slogans for Caregivers

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

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

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

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

Taboo and Curse

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

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

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

In the Valley of the Shadow

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

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

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

What Really Matters?

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

Let Evening Come, Jane Kenyon

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


--Jane Kenyon

Last Days, by Donald Hall

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

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

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

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

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

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

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

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

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

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

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

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

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

Jane Kenyon and Donald Hall

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

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

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

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


Coats, by Jane Kenyon

Sex

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

Always the Counting

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

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

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

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

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

When Death Comes

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

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

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

~ Mary Oliver ~

Solution

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

HALT

This is hard. He is on the couch. I am racing from room to room. The to-do list strangles me. I’m mad and I’m tired. HALT they say in AA; notice when you are Hungry Angry Lonely or Tired. I am all four: H A L & T. Stop and breath. Stop and pray. What can I take off my list? What really matters? How important is it?

War on Cancer

We often say that someone endured a courageous battle with cancer, but the truth is—it’s the doctors who are doing battle and the patients are the prisoners of war.

How Not to Die of Cancer

I’m re-reading Siddhartha Mukherjee’s wonderful book, “The Emperor of All Maladies—a biography of cancer.”

He says so many things that are obvious after you read them but that we don’t think about day to day. Such as: “Cancer is imprinted in our society: as we extend our life span as a species, we inevitably unleash malignant growth (mutations in cancer genes accumulate with aging) so that cancer is thus intrinsically related to age. If we seek immortality, then so, too, in a rather perverse sense, does the cancer cell.”

This is one of the reasons people in the developing world have more cancer. We live long enough to get cancer.

So how to not die of cancer:

Die young.

Die of malnutrition.

Or die of TB, cholera, malaria, dysentery, or any of the prevalent fevers in the second and third worlds: Choose from River Fever, Dengai Fever or Scarlett Fever.

Sexy Funny Cancer

This week a colleague sent me a link to a great cancer advocacy and apparel organization that combines sexy, funny and in-your-face advocacy for breast cancer. That is the perfect combo for Love in the Time of Cancer.

Save Second Base came from women helping women and offers a hilarious tee shirt that has a drawing of two baseballs at oh, about breast height, with the slogan, “Save Second Base.” Brittany who sent me the link said, “some find this a bit “in-your-face, but as you’d probably agree, we find cancer more “in-your-face” – especially the havoc it wrecks on patients and their families.” I do agree.

Save 2nd Base began as a cancer charity walk team for Kelly Rooney, a mom of five,  who died of breast cancer in 2006 at age 43. Rooney designed the tee shirt for her freinds. Now the friends are raising money for research and advocacy for breast cancer especially in young women.

Take a Look:

http://www.save2ndbase.com/

Cancer Cancer Everywhere

A beautiful late winter snow day…tons of unexpected snow and I am in my flannel pajamas at 5pm. Delicious. Also delicious: today I made real Mexican hot chocolate concocted with a bar of real dark chocolate, cream and hot red peppers. And my new toy: a battery operated wisk. (Almost as much fun as other battery operated devices.)

But a soft drum beat in the distance: cancer, cancer, cancer. An old friend has breast cancer, a new friend has bone marrow cancer, a coworker’s child has brain cancer. In today’s paper a reminder that while we oooh and ahh over breast cancer and even colon cancer it will be lung cancer that will kill the most. Lung cancer kills seven times more than all other cancers put together.

Why no ribbons or races or fashion shows for Lung Cancer?

Because we think it is deserved by smokers and their families. A subtle shaming and discrimination. But get this: 80% of all lung cancer diagnoses are in folks who never smoked or who quit decades ago.

What color should the ribbons be?

Valentine's Day

Oh readers you know that I have struggled—with cancer, kids, jealousy, fears, projections, and a fabulous habit of scaring myself to death over and over. Today I am basking in –and saying this so that I remember—we have a good marriage. My own little mind would undo that fact at the drop of a hat—or an email or a bill or a poor night’s sleep. But yesterday—Valentine’s Day—I got it.

Nothing fancy, nothing shiny—just a quick after work date with John—visiting the pastry shop where we met for years as friends who liked to talk about books and music. Yesterday we talked about the craziness and the courage of the past five years—and the pain we caused others and each other as our friendship became romance became commitment. Memories of sweet moments? Yes. Regrets? Yes. The grief and the gifts that cancer has given us? Absolutely yes.

A Promotion

Feels like a promotion. Maybe a graduation—like going from kindergarten to first grade?

John’s “passed” his oncology tests yesterday and is now promoted to six month intervals. Which, yes good for him, but this is also means that I can now move out six whole months in my fear and worries.

Nutty thinking? Yes, I know it is, but if you’ve lived in Cancer Land you know how this crazy fear clock ticks.

Super Bowl Sunday

Today is Super Bowl Sunday. The table is black and gold. My clothes are black and gold. It’s bringing back so many good memories of growing up in Pittsburgh when the Steelers were always winning. It’s a funny thing about growing up in that era—all the sports teams were winners: Steelers, Pirates even the Penguins. I just thought that’s how it is when you live in a city—your teams win. Then I moved to other cities and realized how very spoiled I was by Pittsburgh.

Guests for dinner—pierogies, Chinese take-out, wings, Mexican, all football fan food. We’ll watch the game and the commercials and I will hope and hope for a Steeler win.

But in the background—a slight hum, a slight wafting of low grade fear. Tomorrow is oncologist again. Blood work and “Can you open your pants?” Our little joke that she wants to peek below his belt.

Flip a coin. Steelers kick off? Chemo again? Love—and football—in the time of cancer.

Shame and Caregiving

I’ve just read Brene Brown’s book, “I Thought It Was Just Me” about women and shame. She writes about bodies and money and parenting and work and weight and –surprise—caregiving. Though I’ve read --and now written-- a lot about caregiving I hadn’t seen this coming.

What Brown writes about is the delusion of caregiving. It’s the place where perfectionism and imposter syndrome collide. She writes about how we often compare the hard realities of day-to-day life as a caregiver with the idealized notions of being someone who is responsible, compassionate, dutiful and kind as a caregiver. Brown says, “Any image of stress-free, dutiful and rewarding caregiving is only available to those who have not yet fully engaged in this process.”

She goes on to write about the mistake we make when we talk about role reversal as part of the caregiver experience—and we often talk about role reversal, “parenting our parents”. We imagine that the child becomes the parent and vice versa. I thought that too. But no. As Brown points out there are crucial differences:

• We don’t have the same relationship with our partner or parent that we do with our children. When we bathe our child we don’t have to try to not cry.

• The energy we use to care for a child—even the exhausting care of a baby --is fueled by promise: it will get better and easier and rewards will follow. Not the case with a seriously ill partner or an aging parent. That will get harder and sadder and the experience is steeped in fear and grief not promise.

• Our culture and society has systems and mechanisms that support parents and children. Restaurants have children’s menus and booster seats and special areas for kids but they don’t have the logistics or practices to accommodate customers with Alzheimer’s or feeding tubes.

What caregiving and parenting do have in common though is that everyone’s a critic. There is endless critique and advice and suggestions that we could be doing either one better.

The Swan

On Saturday I’ll read this poem at the memorial service for our friend Will. I did not know the poem before his wife asked me to read it. And now I am in love with this image of ungainly, ungraceful swan that lumbers and is awkward. That’s not what we picture when we think, “Swan.” But the one in the water, the one we see gliding, regal. And now Rilke says that is like us and I think, “Yeah, this is why I like poets—they can put words to this feeling and this fear of my own bumbling, rope tied, tripping over to-do lists life.



"This clumsy living that moves lumbering
as if in ropes through what is not done,
reminds us of the awkward way the swan walks.
And to die, which is the letting go
of the ground we stand on
and cling to every day,
is like the swan,
when he nervously lets himself down into the water,
which receives him gaily
and which flows joyfully under
and after him, wave after wave, while the swan,
unmoving and marvelously calm,
is pleased to be carried, each moment more fully grown,
more like a king, further and further on."



The Swan, by Rainer Maria Rilke, translated by Robert Bly

Criticism

I got a great  piece of advice last week from Diane Sawyer.

Last week I saw her interviewed on Oprah and she talked about her marriage to Mike Nichols. She said the best piece of advice she was given for marriage was: “Criticism is just a very poor way of making a request—so could you maybe just make the request?"

Brilliant. “You are selfish and lazy” is just a really poor way to ask: “Can you help me?”

Now lets see if I can do it!

Collaboration and Creativity in Marriage

One of those times of intense inspiration. I’m reading the book, “The Cello Suites” by Eric Siblin—who tells a personal story of searching for the suites and their history—the political and musical history of Bach’s cello suites. I also dug out an old DVD of Yo-Yo Ma and Mark Morrison collaborating on the third suite and listening to them I was moved again by the critical factor of ego and no ego. (This is a beautiful film of Ma and Morrison working at one of my favorite and most sacred places: Jacob’s Pillow)

Clearly Yo-Yo Ma had to find an artist of his caliber with whom to create these collaborations. Watching him with Morrison I could see that it had to be between to artists who had the same amount of skill, expertise, gift and ego to make the collaboration work. If one had more or less then they would have buried the other or dominated the creative work.

Maybe this is also true in marriage? Each partner has to have confidence in themselves, a belief in their own creativity, health, passion, ability, intelligence and the ego strength to both hold their ground and cede the ground as needed. Collaboration may be a better word than partnership. Partnership suggests each puts something aside—dies down a little—in order to make the concern work—but collaboration requires strength and humility—the ability to suggest, insist and to step aside and be taught without loss of face or ego.

Long Weekend

This is when we feel like a couple. A long weekend and it is a mix of chores and fun and errands and decisions. We went to Saratoga Springs, watched lots of football, obsessed over home goods for kitchen and bath, set up a wireless network to use the lap tops, made chili and bread together, went to a wake, read for hours and made love.

Even in this loving, cozy time death was near us. We talked about health and illness and aging. Maybe being older helps and maybe cancer was gifting us too with this reminder of time and attention.

Snow Day

Big snow today. John had a snow day and I had a work-at-home day. I was restless at first—always happens. I dream of a day at home and then the reality is that I don’t know how I want to use it—too many possibilities. I was starting to fuss and feel frustrated with myself –should I read, write, research, do errands? Try to get to a meeting? Try not to?

Then it hit me: there were so many days over the years when we’d wished for and fantasized about being together on a snow day. It wasn’t possible and it gave those past snow days a kind of sad tinge.

But here we were now-- together, alone, snowed in.

I shook my head, turned up the heat, took John to bed --and turned up the heat. No more frustration.

When Death Comes

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


---Mary Oliver

Christmas Vacation

People plan. God Laughs.

Our three day trip to in Florida turned into eight. John’s Mom has no TV or internet so we blithely arrived at the Palm Beach airport to fly home on December 27th and like many were turned away. After hours and hours of airport life and long lines and my almost visceral refusal to believe that even with the storm we could not leave for five days—I finally surrendered and accepted what it was.

I began a gratitude list in the airport:

1. I had 18 hour mascara

2. I love to read magazines and the airport was full of mags I’d never read.

3. My husband was not screaming at me—a man behind us kept screaming at his wife.

4. We were not blind—a couple near us were both blind. (And they were negotiating all this hassle and being decent.)

5. I was not traveling with an infant—several families had teeny new babies.

6. I remembered to pray. (It took some work to get my thoughts to behave but I did pray)

7. We were both ok—really ok. We had family nearby so eventually we gave up and went back to John’s Mom and ate extraordinary food for five days and

8. This unexpected and unplanned week gave me a chance to get to know my new mother-in-law in ways I never could as a holiday houseguest.

Because we had planned our Christmas time with each other for December 27th—we had our own celebration on January 1st.

My favorite gift to John was a hard to find recording of Jeremy Denk playing Ives.

My favorite gift from John was the “Clapper”—the gadget that turns lights on and off with a clap of hands. Really. Now we can turn lights on and off in bed. All kinds of possibilities there.

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.