Sunday, May 24, 2015

Cancer Without War

This week I discovered a new cancer book. The book is not brand new, but new to me; it was published in 1999.

The book is called: “Speak the Language of Healing” with this great subtitle: “Living with Breast Cancer without Going to War.”  And they had me at “without going to war.”

I have always hated the war imagery of most cancer advice. We are so often admonished to “battle” cancer and “win the war” on cancer and vanquish cancer, but, as I have written here before, cancer is part of us (all of us) so when we hate and kill cancer that is what we are doing to ourselves. 

But there is something else very cool about this book. And I should mention that while it is directed toward those with breast cancer it applies completely to any person or family facing any cancer. The book was written by four women who had cancer—staged I to IV—and their experiences of emotional, medical, psychological and spiritual reactions and learning.

The authors are: Susan Kuner, Ed.D. Carol Matzkin Orsborn, M.T.S. Linda Quigley, M.A. and Karen Leigh Stroup, M.Div., Ph.D.—that’s a pretty authoritative group of authors. Each with cancer and each with experience as caregivers.

The chapters are listed as “Stages” fitting the cancer theme and they include:
The Stage of Impact, The Stage of Chaos, The Stage of Choices and The Stage of Spirit.

Some of the stuff I especially like is the chapter on whether and how to trust the traditional medical establishment and when to put faith in alternative or spiritual healing. And a wonderful section where each woman writes about what she learned. 

This is a very learned and literary group of author/patients so the lessons are about really deep stuff—God, faith, loneliness, relationships etc.  Karen Stroup explaining how cancer separated her from even her dearest and closest friends quotes Flannery O’Connor who said this about her lupus:

“In a sense sickness is a place, more instructive than a long trip to Europe, and it’s always a place where there’s no company, where nobody can follow.”

These four women deliver honesty, raw and ragged emotion and a powerful perspective on cancer that, while it may be about death, is not about killing.

Monday, May 18, 2015

Diane Cameron--The Cornelia Street Cafe May 25

I am so happy to invite you to join me at a reading in New York City--next Monday night--May 25th. 

I will be at The Cornelia Street Café –a fabulous place to eat and drink, and a generous, welcoming place for writers and performers.

The themes of the night will be cancer and caregiving and relationships and love and sex--(of course sex!) --and Amy Winehouse and romance and life and love and death too. That about covers it. 

Some former classmates from Bennington College will be reading as well--so talent and inspiration galore. I’ll be reading from “Love in the Time of Cancer” and “Looking for Signs” and from the new book in progress—and trying out some goodies that I only dare read in New York City.

If you are in New York please come—I would love to meet you. Tell your friends—it will be such a pleasure to meet Facebook friends and blog followers in three dimensions. I can promise you a lovely summer night.

The evening begins at 6pm.

Cornelia Street Café is at 29 Cornelia Street—between Bleecker & West 4th. The subway stop is West 4th Street.

Thursday, May 14, 2015

Poetry of and About Cancer: Moira Linehan

Poet Moira Linehan will be reading this Saturday at 11:30 am at Market Block Books in Troy, New York.

Her poetry collection depicts her life as both a cancer caregiver and as a cancer patient. Her beautiful, elegant and honest poems began in her husband's last year of life and then continue into her own breast cancer diagnosis years later.

Here is the description of her new volume on Amazon:

After learning she has breast cancer, the poet struggles to live an examined life. Alienated and estranged from her own body, she turns her cancer into “these binoculars, / this new way of looking,” and uses it as a way of fixing herself firmly within the moment. As she travels Ireland and the Pacific Northwest, her busy mind moves from the knot in her breast to the knots in her knitting to the illuminated knots of The Book of Kells to the tossing, knotted surface of the sea; from the margins of her surgery—clean but not ideal—to the margins of illuminated manuscripts. She links the mundane to the mythic, intertwining connections between scripture and nature, storms and loss, winter and light, breast cancer and embroidery. As she returns to her home on a small pond in Massachusetts, she takes with her the fruits of her travels: the incarnate grace of the ordinary.  

Saturday, May 9, 2015

Don't Be a Victim

Here is an exercise that I use in all of my classes, whether for writers or for caregivers. It can be used as a daily practice and it works well for me when I feel self-pity coming on, or whenever I start to blame someone else for my feelings. The exercise is called, “Don’t Be A Victim” and it goes like this:

First, you complete each sentence below in your notebook, Fill in the blank with the first thought that comes to mind.

I HAVE TO_____________________________

I CAN’T__________________________________

After you have completed those sentences do this:

Go back and cross out the word “Have” in the first sentence and replace it with “Choose”, and then:

Go back and cross out the word “Can’t” in the second sentence and replace it with “Don’t want to. ”

You might be shocked and you might even debate those new sentences, but give it some thought. These really are your choices. For example you might have first written, “I have to be at work by 8.” But you change that to say; “I choose to be at work by 8.” And you argue that, but I have to or I’ll be in trouble. But that IS your choice. You don’t want trouble or hassle or a reprimand and so you CHOOSE to get there by 8. It is your choice. 

It is always your choice.

The point:
If you don’t like your life fix it.
Don’t feel sorry for yourself; it will destroy you.
Accept responsibility for your own life.
Stop lying to yourself.

Teach yourself not to be a victim.

Bonus points: Do this exercise with kids. Teach them young.

Saturday, May 2, 2015

The Literature of Caregiving: Operating Instructions by Anne Lamott

Likely you have a favorite book by Anne Lamott. Most writers have a worn and underlined copy of “Bird by Bird” her book about writing. Church folks and faith seekers always adore, “Traveling Mercies”, and who hasn’t given or been given a copy of “Help. Thanks. Wow”
when life gets hard or good or real.

Fewer people know Lamott’s novels—most set in her own Northern California. Lamott brings her writing life and the angst of parenting to an imagined, fictional community—much like Marin County –possibly to play out what’s happening in the real community.

I have read all of Anne Lamott’s books and her very first book still remains my favorite. And, fitting for this series, it is a book about caregiving. 

“Operating Instructions” subtitled, “A journal of my son’s first year” is the story of Lamott’s pregnancy and her first year as a single mother at 35. It also happens that it is the period of her early recovery as becoming a parent turns out to be a wake-up call and how she hits bottom. Of course, Lamott is funny, honest, comforting and wildly self-disclosing. We have come to expect that from her.

But the part two of “Operating Instructions” is that while Anne is pregnant and getting through the first year of baby Sam’s life, her very best friend—Pammy—who has been Anne’s biggest supporter--is dying of cancer. So yes, life and death, and welcoming big love and saying good-bye to big love happen in one year and one story.

What I especially love about this book is that it gives us a caregiver story rarely celebrated in our genre—the friend caregiver. Anne is taking care of baby Sam and taking care of dying Pammy. Pammy takes care of Anne and gives her enough love to launch Sam’s new life. And what makes this caregiver story so great is all the qualities listed above: the humor, honesty, deep authenticity, and –this matters so much—an example of a caregiver doing a great job imperfectly.

“Operating Instructions” is my favorite gift to give at a baby shower or to a new Mom. Even the most insecure and nervous Mom will feel successful and competent after reading Lamott’s view of her sweet baby and the simultaneous passionate love and ambivalence she feels as his caregiver.

This might also be a good gift book for someone who has just learned of a friend’s cancer and is wondering what to do. Anne and Pammy and Sam are a trio of messy, wondrous love.

[The Literature of Caregiving is a monthly series. You can read earlier installments on December 8, 2014, January 16, 2015, February 17, 2015 and March 23, 2015.]

Sunday, April 26, 2015

Stay Strong,  Eat Well—To Fight Cancer

Yes, after a cancer diagnosis you might be tempted to say F*** It!—and eat whatever you want. And there is a kind of positive fatalism in that….and there may be a place for that kind of crazy binge.

But mostly, when you have cancer, you need to eat well. You need to eat good food and good tasting food so that you simply will eat—that’s a huge issue for folks going through treatment. Nothing tastes good; your taste buds are fried from chemo or radiation. Or you have lost your sense of smell—another wicked side effect—and you discover that what they say is true—most of taste is actually smell. Or you are so dam tired that you not only don’t want to cook, you don’t even want to eat what other people cook for you. 

And don’t get me started (again) on lasagna. I know, your well-meaning friends and co-workers will bring you so much lasagna and variations on lasagna: ravioli, rigatoni, beef goulash. The thought is good—it’s easy to make a casserole and you can (the accompanying note will say this) “easily re-heat this”.  But the truth? Most of it hurts. Mouth sores from most chemo hurt like hell and spicy (even mild) red sauce aggravates it.

But you gotta eat. This is where your caregiver point person must be smart, strong and bold and when asked if someone can bring meals or set up one of those caregiver calendars for meals—they have to be very direct: We want chicken, salmon, shrimp and these vegetables—by name. Or gift certificates to great restaurants for delicious take-out. No, you the patient or family caregiver cannot say that. You’ll sound ungrateful and petty and fussy. (No one is really thinking that by the way, but you’ll think they are.) So the friend in charge of food has to be bold and direct. 

And here is why you need to care about your food:

69% of cancer patients have health issues or disorders beyond their cancer. *

Even a 5% drop in weight in a month can decrease a person’s tolerance for treatment. *

Eight out of 10 people living with cancer are malnourished* which means that they don’t have the needed fuel for the healing process.

So if your cancer care center has a nutritionist take the offer of an appointment for nutritional therapy.  Take every free program. Bring your caregiver and the bold friend who is in charge of your food/meal volunteers.

But go beyond that and also try an integrative health coach who can help you align your diet and nutrition and naturopathic services with your medical and oncology treatment.

*National Cancer Institute 2015

Wednesday, April 22, 2015

Before I Go

The plot for this book seems clever: A young woman is diagnosed with a terminal cancer and has just a few months to live. Before she dies she wants to find a new wife for her husband so that he will be happy and cared for after she dies.

That seems the conceit for a chick flick, right? You can imagine: feisty heroine, selfless love, and the requisite funny, sidekick best friend who is in on the plot. It’s all silly but sad matchmaking, and even a “Terms of Endearment” sad Mom as well.

And in Colleen Oakley’s first novel, “Before I Go”, all of those elements are present. You
might even assume, as I did, that this would be a relatively light-hearted (it’s always relative with cancer and death) book. And it does start out that way.

But then, the writing takes off as the story gets tougher and our happy (dying but sassy) heroine begins to show us the realities of knowing that you are really, really dying.

A scene that I loved: She is telling us about the romance novels that she watched her mother read when she is growing up and how she just assumed that as she got older and her hair got gray that she’d read romance novels too. But then it hits her, “But my hair won’t gray. And my skin won’t wrinkle and I may die without having ever read a romance novel….and this, this! is what makes me start to cry. And it occurs to me that if I were to write a “Coping with Terminal Cancer” pamphlet, this is what I would cover. Not the obvious stuff about anger and bargaining but crying over bodice rippers in a suburban mall at 10am on a Monday morning.”

And the search for her husband’s next wife? Oakley takes us from a silly conceit to the depth of mixed feelings for both partners when a spouse is dying of cancer.

I definitely recommend, “Before I Go.”