How Love in the Time of Cancer Began

On Monday night I had the great gift of reading at The Cornelia Street Cafe in New York City. I read a sampling of pieces from my books and blogs including this excerpt from Love in the Time of Cancer:

Intro to LITTOC and Amy Winehouse:

We were friends and then lovers. We began a new life. I’m Max and he is John. Well, not really, but soon you’ll see why we want to keep a modicum of privacy. 

We met years ago and we drank a lot of coffee, talked about books and sports, favorite restaurants and movies we loved. The conversations became more personal. We fell in love and became lovers. We became a couple in simple and complicated ways. We bought a bed and dishes, opened a joint checking account, went grocery shopping and took a vacation together. We took tiny, careful steps to meet each other’s family and friends. 

One day he asked me to drive him for a routine colonoscopy. I had done that for many friends. No big deal. I dropped him off and came back hours later. We sat in the small curtained cubicle waiting for the doctor to sign him out. I asked if he’d prefer for me to wait in the lobby, trying to be discreet, allowing him some privacy for a conversation about body parts. “No”, he said, “The doctor is just going to tell me that I have polyps and then we’ll go have lunch.” 

I remember those words because, of course, that is not what the doctor said. Instead when the doctor came into the little cubicle he looked at the chart, and then at me, and then at John, and then the doctor said, “You have a problem.”

The problem was cancer. Stage three colon cancer and so instead of lunches and vacations there was surgery and doctors offices and oncology. Our courtship was chemo and our honeymoon was caregiving. And there was lasagna—so much lasagna. 

I am lover and caregiver, but I am also a writer and fierce about what was happening to him and to me and to us. 

So I started this blog, “Love in the Time of Cancer” to tell my side of this story. I too am a cancer survivor but this story is about John’s cancer and my caregiving.

I am not objective. I am not unbiased and at times I am not a very nice person. But then, cancer is not very nice either.

I am also writing this because I hope at least one person can have their sanity confirmed by this blog.  I found so little useful information for couples that talks frankly about cancer and relationships and almost nothing that talked about cancer and sex. So, I’m a writer—I knew what I had to do.

Oh yes, there are those pamphlets. About as useless and the one’s I was given at 13 that were called, “You’re a Young Lady Now” and “Growing Up and Liking it.” Most of the official cancer resources have tried to be helpful but there have been so many platitudes and so very much condescension. 

I am also writing this because as Mark Twain said, “I don’t want to hear about the moon from a man who has not been there.” Loving a man with cancer is my moon. Take the next step with me.

Well, our next steps were surgery, then chemo, then marriage then more chemo. It was literally a trial by (chemical) fire. But we made it through. But it wasn’t easy. I made a decision to get really angry. And it was a decision. As I was about to be overcome by sadness and fear I got mad. 

What follows is one of the first pieces that I wrote for Love in the Time of Cancer:

The Amy Winehouse House

A couple of weeks ago we visited a cancer support group to see what kind of help might be available. The place was lovely and there was a long list of activities for patients and caregivers. But a few minutes into the orientation I picked up the whiff of condescension that accrues around cancer. 

Part of it is the pastel approach to surroundings but it’s also apparent in the tone of voice that is used by staff. It’s a cross between the voice you use when talking to a small child and the voice one uses talking to someone in the midst of a psychotic break.

The other hint is the two-handed handshake: the staff member takes both of your hands in hers and it is accompanied by the long, deep gaze which immediately feels like someone told the staff how that “people with cancer need to be seen.” And, well, they are going to make dam sure you know you are seen. 

But the greatest tip-off to the fact that once you have cancer you’ll never be treated like a competent adult again is revealed in the list of activities offered. The counselor took me aside to explain the caregiver activities and told me with that kindergarten teacher lilt in her voice, “We get together on Thursdays and make milkshakes”. Milkshakes! 

I said to John on the way home, “Why would I make milkshakes in a fake TV studio kitchen with a group of strangers because you have cancer?”

That milkshake was my turning point--and it set me to thinking about the kind of cancer support place I’d like to create. Hence the birth of The Amy Winehouse House.  

The tagline at the Amy Winehouse House is: Fuck Cancer.

Our mission: We believe that cancer and its treatment is fierce and so everything around it should meet that fierceness head on and not back down into pastel prettiness. We don’t coddle and we don’t play word games. We don’t parse “living with” versus “dying from” cancer.

At the Amy Winehouse House we are not nice and not pastel. We don’t believe that having cancer makes you nice or pastel either. If you were an ass before you got cancer, now you are an ass with cancer. We don’t ask you to share, process, make crafts or drink smoothies. We offer no bookmarks or anything that has or requires a crocheted cover. 

Activities at the Amy Winehouse House include:

Making martinis

Strip poker night

On Saturday nights we have strippers.

... Yes for girls too.

And we have a smoking room …(if you have cancer and are going to die we want you to enjoy a cigarette on us.)

And of course, we have drug education.  We think of it as self-chemo. Our role model, Amy Winehouse, was an expert on self-chemo. Our self-chemo classes explain how to smoke crack and how to play the cancer card to score medical marijuana. Our movie nights include pornography.  (After all, cancer is pornographic so why get all puppyish and pastel about something that is violent and intrusive.) 

We do have a Board of Directors. All nonprofits do. At The Amy Winehouse House we too have those that we turn to for guidance. These are the folks who help us stay true to the mission. 

So in the spirit of full disclosure here are the members of our Board:

Amy Winehouse 

Keith Richards

Grace Slick

Jackson Pollock

Janice Joplin

Darryl Strawberry

Sherlock Holmes

Frances Phelan

Anna Karenina

John Falstaff

Jimmy Hendrix

Joan Kennedy

As you can imagine, planning the Board meetings can be tricky. And, yes, we do know that some of these folks are dead. You may wonder about that, but that’s kind of the point. People die of cancer so these folks are helpful on that side of things. 

And yes, it has also been pointed out that some of our Board members are, in fact, “fictional.” These too are important Board members. Anyone who has worked in the nonprofit world knows that these are, above all, the best kind of board members to have. You know exactly what they are going to say, and they make a lot less trouble for the staff. 

Later I’ll explain our policies for volunteers. We don’t have tee shirts, but you do have to wear eyeliner. We’ll also talk about why we never liked Lance Armstrong, long before it was popular to dislike him. And yes, …we have bracelets too, but ours say, “Fuck Cancer.”

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.

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 4^th. The subway stop is West 4^th Street.

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.  

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.

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.]