Tuesday, April 30, 2013

Poetry Month Comes to an End

But not poetry....poetry is very important in Cancer Land. Here is more:

 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 the phases 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

Saturday, April 27, 2013

Talking to a Sick Friend

We have been there. You have been the sick friend or you are the caregiver and you witness these conversations. A friend knows that you have cancer and what do they say now? They want to say something helpful, comforting or maybe distracting? But instead what comes out is painful, awkward or downright senseless.

And yes, it’s true even though we have been on the receiving end doesn’t mean we have not delivered our own misplaced advice, perspective or strange comments. In fact those of us in Cancer Land might be at greater risk of saying something untoward because we have some information or some advice.

But be mindful of this axiom: “A closed mouth gathers no feet.”

And then get this new book: “How to Be a Friend to a Friend Who’s Sick.” Its brand new and by Letty Cottin Pogrebin. Yes, you recognize that name. She was co-founder, with Gloria Steinem, of Ms. Magazine. So yes, this is a smart book and it’s not just etiquette—it’s also social perspective.

While warning off clichés and self-referential comments (My cancer, my wife’s cancer…) Pogrebin also explains how not to infantilize the patient, and how to talk with someone who has a terminal diagnosis. (Yes, of course you are visiting them—this is your good friend.)

“How to Be a Friend to a Friend Who’s Sick” is getting great reviews so you can find it easily at your local independent bookstore or at the library.

Thursday, April 25, 2013

Raymond Carver for Poetry Month


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

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

being loved by a good woman. Eleven years

ago he was told he had six months to live

at the rate he was going. And he was going

nowhere but down. So he changed his ways

somehow. He quit drinking! And the rest?

After that it was all gravy, every minute

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

well, some things that were breaking down and

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

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

I’ve had ten years longer than I or anyone

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

--Raymond Carver

Monday, April 22, 2013

Supporting A Partner with Mesothelioma

Nothing can prepare you for the feeling of devastation when a spouse is diagnosed with malignant mesothelioma, a rare but aggressive cancer with no known cure.
But you can prepare for the fight you are about to face. Just ask Geri Lepore of California, who in 2012 lost her husband Gene only 15 months after he was first diagnosed and had his prognosis.
“When I look back now, I realize it became a love story for us,” Geri said in an interview with Asbestos.com. “It was my greatest joy to take care of my husband through sickness and health. It was truly, unconditional love. For that, I’ll always be thankful.”

While Gene provided the hope and optimism until the end, Geri brought both the emotional and physical support he needed. Instead of relying entirely on the advice of doctors and nurses, Geri learned everything she could about the disease, which was caused by an exposure to asbestos in his workplace decades before.

Eventually, she understood how mesothelioma worked, and the best way to manage it as his primary caregiver. Knowledge was power. Knowledge gave them strength and confidence in what they were doing.They never hid from what needed to be done, and they refused to be afraid. They rode the emotional rollercoaster that became their life together every step of the way for 15 months.

Mesothelioma Changes Caregivers, Too
Like many caregivers of this disease, Geri underwent her own transformation. For years, she relied on Gene for so many things. She then assumed that role. He relied on her.
She handled his daily regimen of medications, getting him to his treatment sessions, taking care of his hygiene and his appointments. She took over the bill-paying. Near the end, she gave him baths and fed him.

She probably did more than even she would advise other spouses to do, and it wore her down physically. It took her more than a year to recover and return to her once active lifestyle.
There is no “best way” for spouses to deal with this diagnosis. Everybody reacts differently to difficult medical news.
But there are tips that medical experts agree can help. Among them:

·       Lean on others for help. Don’t try to do this alone.
·       Find time to get away. You will need to refresh your mind and body.
·       Find a support group. Share experiences. Learning that others have walked this journey before you really helps.
·       Take care of yourself. Eat healthy. Exercise.
·       Read everything you can about mesothelioma. Get second and third opinions. Do not be afraid to ask tough questions of the doctor(s).

Gene and Geri Lepore Named Their Adversary
Gene called his cancer “Mr. Meso,” giving a name to an adversary that he and Geri could battle. That allowed all the negative feeling and emotions to be transferred outside their loving family.
“There was a time I was angry. It was easier to attack Mr. Meso,” Geri said
Geri read the Bible. She prayed. She never lost faith. A reading from Corinthians became her daily prayer each morning. “Love is patience, love is kind . . .“  Geri discovered a strength and willpower she never knew she had. She was sitting bedside when Gene took his last breath.

 It (care-giving) was a 24/7 job, but I’m a better person for it now,” she said.

Guest Writer for LITTOC is: Tim Povtak is a senior writer for Asbestos.com. He spends time each day talking with people who are dealing with mesothelioma, their spouses and the physicians who research and treat the disease.

Saturday, April 20, 2013

The Hardest Caregiving

At this blog we talk a lot about caregiving and cancer. We also talk about caregiving for an aging parent and caregiving for a loved one with dementia. I’ve never liked the idea of a hierarchy of suffering. I have always hated that talk of, “man with no shoes meets a man with no feet” which always feels like a way to shame someone’s pain. When we suffer we suffer. When caregiving is hard it’s hard.

So when I read Emily Rapp’s new book I had to keep challenging myself on this, “no hierarchy” idea. Her astounding memoir is called, “At the Still Point of the Turning World” in this book Rapp writes about caring for her son Ronan after he is diagnosed with the always fatal, always terminal Tay-Sachs disease. He was nine months old. He would not live past three years.

But Rapp took on that very hierarchy fallacy in her story. She talks about the way that we-- and even she—have a tendency to measure suffering, grief and death: what’s worse: an old person versus a younger person, an adult versus a child. But Rapp, who is fully entitled to say, “I win; I have the worst caregiving role” does not play that card. Rather she uses her story to show all of us what it’s like to fear and to suffer, to anticipate death and then to grieve...and she shows us most stunningly how to have a life that while not joyful, also includes joy while she is Ronan’s mother and caregiver.

I know this may not sound like the book you want for spring break or the beach—but it really is. Rapp is so smart and so literate and so personal in detailing exactly what a howl of pain is like that you want to stay very close to her and say “Thank you for letting me know about this intimate part of being human.”

In a late section of the book Rapp describes a workshop she attends on “Being With Dying” to prepare herself to be with her toddler as he dies. She shares this lesson:

 “At Upaya they taught us that to be fully present with a person who is dying you must have a strong back and a soft front. Most of us live with the reverse. We are outwardly defensive, and because we resist compassion we are actually weaker.”

Please take a look at, “The Still Point of the Turning World” by Emily Rapp.

Tuesday, April 16, 2013

Chemo Feet

The other day I was telling a friend about John's feet and the care that he takes with balance especially upon waking. This is another late gift from the colon cancer chemical regimen 5FU. And FU it is! That's the good news/bad news leftover: peripheral neuropathy. 

It's one of those things that people don't like to complain about in CancerLand. I mean, it's kinda bad form: you're alive, you're not on fire, there's no new surgery coming...so you have numb feet. But it's more than that. People with Diabetes understand. They know the consequences if you can't feel your feet--balance is shot, sports are limited and you have to look down to see if you are cut or burned or hurt.

But today I found this great article about Chemo Feet by Susan Gubar who wrote so beautifully about her ovarian cancer last year.

Here's the link. Take a look at what she has to say about neuropathy and losing touch with her feet:


Saturday, April 13, 2013

Poems for CancerLand in April

April is Poetry Month so,

“Let us remember…that in the end we go to poetry for one reason, so that we might more fully inhabit our lives and the world in which we live them, and that if we more fully inhabit these things, we might be less apt to destroy both.”         --Christian Wiman

For this Poetry Month I’ll be adding some poems about cancer and caregiving and relationships. I hope you’ll make them part of your meditation and that you will share them with your friends and family.

I’ll begin with my favorite, “What the Living Do” by Marie Howe:

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.

                                                                            --Marie Howe