The Literature of Caregiving: Siblings as Caregivers

At some point each Christmas morning the telephone rings

and hearing the phone I think happily, “Oh, that’s Larry 

calling to say Merry Christmas”-- as was his habit for 

twenty-some years since we left home in our teens.  Then 

smiling, rising from chair or bed to reach for the phone, I 

drop my hand. I remember. This cannot be Larry calling; 

Larry is dead.

I am the youngest of five and have watched as my older brothers and sisters became ill. I was the caregiver to my brothers as they went through long illnesses and then died. For one brother I was the nearby, hands-on caregiver, for the other I was the long-distance, travelling caregiver. Both versions are hard.

One of the things I have learned going through this kind of loss so many times is that there is surprisingly little consideration for siblings as caregivers and siblings as mourners. Siblings are not considered primary mourners; they are expected to assist the primary mourners: parents, spouses and children and then get on with their own lives. But sibling illness and death is often more traumatic because of it’s very unexpectedness.

When I began this education in caregiving I was taking care of my brother Larry, and soon after his illness began my brother Sigmund was diagnosed with ALS. I was beside myself with grief and also with logistics. It took a long time to find my role and my voice with doctors and in hospitals and with all the related support staff. I can marke my learning how to be a caregiver with each visit to the hospital with Larry—and there were so many.

What also helped me enormously were two books by sibling caregivers. First, “Landscape Without Gravity” by Barbara Lazear Ascher—who in 1993 wrote about taking care of her 31-year-old brother Bobby who was dying of AIDS. She writes of his care, understanding his

relationships and then the grief—collective, familial and personal that consumed her.

Le Anne Schreiber’s book, “Midstream” was written earlier but came to me later. Schreiber writes of sharing caregiving duties with her brother as they care for and prepare for their mother’s death. Her book is more of a journal, that depicts the interplay of siblings—back and forth—as

the caregiving duties mirror Schreiber’s love of fishing for trout.

The love and pain of brother and sister in that book brings back to me my appreciation for a condolence note that I still cherish.

She wrote:“The loss of a brother is so terrible because we played with them and fought with them and expect to have our children do the same with theirs, and we expect them to be there and to help us when it is time to bury our parents. Losing a brother is losing both your past and your future.” 

I remember when I was in the first grade learning about The United States from one of those wall sized maps that are common in elementary classrooms, the ones that show each state as a different color, and I remembered the first time we went on a family vacation and how disappointed I was that all that distinguished the next state was a sign saying, “Welcome to Ohio” and Ohio was not blue as my classroom map had shown. 

 I was older, but similarly disappointed when, after my sister Joyce died, I discovered that the stages of grief that I’d always read about were not clearly recognizable. Instead I found that I could be angry and happy and sad and in and out of denial and find acceptance and then be depressed all over again. I believe that it is our fear of death that makes us want to organize grief, make it shape up, get in line and have specific manageable moments.

“I am so sorry about your loss”.  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 not a euphemism but the perfect word to describe the feeling that follows a death.

Though he died years ago, my feeling about Larry is that I have misplaced him; It’s that 

sensation of knowing that my book or my glasses are around here somewhere…if I could just 

remember where I left him.  There is a sense of something just out of reach, still here, but 

also gone. 

I think this is why we are so hard on the grieving. The world loves closure and to have 

things sealed and settled. But death and grief are not as final as we would like. 

                     

This is why it is a great surprise to find that grief contains such a broad range of expression.  

What I have learned is that death ends a life but not a relationship. And that is why, on 

Christmas mornings, I still rise and reach for the phone. 

***************

The Literature of Caregiving is an occasional series on this blog. See other entries on
December 8, 2014, January 16, 2015, February 17, March 23rd, and May 1st 2015.      

Feeling Powerless? Try Alanon!

Today I attended an Alanon meeting. Alanon is the 12 step program for family members or friends of someone with an addiction. Today I realized that Alanon is also a great resource for cancer caregivers. (And don’t we all qualify for Alanon? Do you know anyone who doesn’t have a relative or friend with addiction or recovery in their story?)

The ideas discussed in an Alanon meeting are all things we struggle with as caregivers: We are powerless; we struggle to admit our powerlessness; we try to find the right Higher Power; we have to stop making cancer or the oncologist or the loved one with cancer into our Higher Power; we need prayer and meditation; we have to stop giving advice --and the thing that is key and so, so hard to practice: We have to learn self-care and to keep the focus on our selves.

Yeah, I know, “Keep the focus on yourself”. Seems crazy but it’s true. People in Alanon know about this: at the very time it seems impossible to stop focusing on the other person is exactly when you have to shift gears and go to self-care.

And no one can do that alone. That’s why we have caregiver support groups and phone lines for cancer caregivers and places like The Hope Club and Alanon. We need each other. I need the wisdom you have today, and I’ll loan you mine tomorrow. 

Take a look at the Twelve Steps. They work for cancer and caregivers too.

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.]

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

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.”

Cancer Complicates Communication at Work

Healthcare is changing. That’s not news. And if you have been dealing with cancer for several years you can track many of the big changes as they have affected your treatment, your co-pays and your costs and your paperwork. 

Oh God, the paperwork!

Olden days: You had health insurance through an HMO and you had co-pays for various services. So much $ for a doctor’s visit, so much $ for a specialist, so much $ when you went “out of network” etc. Then another copay for your medications—there was a range of course, and you learned to ask about brand name and generics.

Then it began to change: Maybe you had a heath savings account—you put money into it  pre-tax and you could spend that down within 12 months for legitimate healthcare expenses. No plastic surgery, teeth whitening etc. But that was the least of your worries-unless you needed plastic surgery to realign some things that got moved around with cancer surgery or your chemo left your teeth gray. (Then you appealed and debated and probably lost your appeal.)

If you wanted massage, acupuncture or chiropractic you were on your own…but the medications and prescriptions were still relatively reasonable.

But then the description of chemo started to change: Was oral chemo a treatment? Or a medication? Did you pay $25 each time or $250 each time or $2,500 each time? And then was chemo by infusion reclassified as a medication too? The battles began. 

Your record keeping system had to get pretty sophisticated. One fat file would no longer be useful.

But the thing you could still count on was being able to talk about your cancer at work and never feel you were at risk or that there would be negative consequences. Or that people were looking at you in a “certain way”.

Now, as health care changes again, and we are taught to be conscious consumers, we are learning how the healthcare industry views a cancer patient and how –by default not by unkindness—employers also view cancer.

Organizations—businesses and corporations and nonprofits have to manage their healthcare dollars much more carefully. Healthcare is one of the biggest expenses of any business and its more than, “How many employees to you have to cover?”

Now an organization has to look at its Medical Loss Ratio: that is, How much does Company ABC have to spend based on the wellness and healthcare demands of its employee population. The rate the company will be charged by the health insurance company is based on how much usage a particular company has over time. Yep—“How healthy is this company—overall?”

Lots of math and statistics go into those calculations. They try to keep it fair and reasonable. So, for example, if there are ten pregnancies (babies are expensive in health insurance) a company’s usage might be high in 2013, but the next year there are no babies but one employee heart attack so several years get averaged together and projected to determine a rate reflecting how much demand (expense) this company’s employees are likely to incur (cost).

So here is how it starts to get creepy. And why you have to be a little bit careful.

No one is allowed, of course, to ask about your health in a job interview, and you have learned not to lead with “I had cancer last year,” but maybe you are still growing out your hair, or you have a resume gap to explain, cancer is going to come up. And this is where it is delicate for you and for the folks in HR. Because, remember the HR folks are also the ones who are negotiating with the insurance companies and they (of course) want to have as healthy an employee population as possible to keep costs as low as possible.

Yes, you are getting the “heart-healthy lunch” on Friday and the pedometer on Wellness Day because they care about you—and because they care about how much the company’s medical loss ratio will increase if a high proportion of employees has cancer—or a heart attack or a baby—this year.

The dynamics are changing. How health insurance costs are measured and attributed are changing. You need to know this as you make choices about how you communicate about your cancer at work.

The Survivor Card

Yesterday at a business event, a woman—who was a complete stranger to me--said, “I’m a two-time breast cancer survivor.” 

All day I thought about what she said, so out of the blue, and I wondered at her need to describe herself that way. I don’t know if she’s married, a mom, has cats, belongs to the Libertarian party, hates the sound of chalk on a blackboard, or loves raspberries, but I know about her breasts and her health.

What I also know is that the experience of cancer has so colored her life that it has become her primary identity. That seems as great a tragedy as the surgeries and treatments she has been through.

I know we should not be ashamed of cancer, and we do help others when we talk about it, but we also have to be mindful of not letting it define us. I am more than cancer and more than a caregiver. Yes?

Many years ago Mary Fetting, a wonderful therapist in Baltimore, helped me to make some big changes in my life. She saw how my thoughts were keeping me stuck, and she used to say to me, “Play another card.” She explained that we are each dealt a hand of cards—we get maybe seven to 10 cards each—both good stuff and bad stuff.

“But, she would say, “Some people just play the same card over and over.”  “Look at your hand,” she would say, “and play another card.”

I wanted to say that to the woman—whose name I never learned --but who believes that the most important thing about her is cancer, “Please, for the sake of your life, play another card.”

Sex and Intimacy and Cancer

It’s been a long time coming but finally I came across an article about how your sex life might be impacted during and after cancer. The article is in CURE Magazine. (Cure is available in your oncologist's office or at any chemo center.)

Written by Lacey Meyer, the article discusses the challenges, feelings, fears and the shame about losing, reclaiming or trying to revive your sex life. Meyer addresses both the patient and the caregiver. The article talks about libido, erectile dysfunction, hormonal changes and the conversations required.

 Yes, she does include the requisite bit on cuddling. Sigh. (The “C” word). But brave Lacey Meyer-- she also talks about masturbation and vibrators and getting pleasure.

An open discussion about orgasms is coming soon!

You've Got to Be Carefully Taught..

Spain, Israel, Africa, Iraq. We look around the world and we see terrorism targeting civilians and it scares and angers us. When we read that some of the terrorists are educated people, some even working in healthcare, we shake our heads. The word incomprehensible comes up over and over. We don’t understand that kind of hate. 

In those moments we think that we would never be like those people. We are sure that we’d never disregard human life in such terrible ways. But the truth is that we have, and that in order to move from hate to peace we have to face that part of ourselves. Do we have the courage to look at the times when hate has been part of our national policy and politics?  

The view of the United States after two world wars, after Viet Nam, and atom bombs, our tolerance of holocausts, and repeated ecological disasters raises a fair question. Yes, it is painful to admit our past but pretending to be the innocent and injured party won’t help us change the world.  

What underscores all of it is hate. Not a nice word and certainly a behavior that we’d like to think we reject. But the scariest thing about hate is that it is easier than most of us imagine. What it requires is an unconscious dehumanizing of others.  Hence believing that our enemies are not like us. 

Seventy years ago psychologist Gordon Allport wrote, “The Nature of Prejudice”, still the most profound book on the subject. In his book, Allport makes clear that hate is a disorder of perception and that the hated has to be made “other”. But, he says, --and this is why hate is so destructive—“Hate like love, requires a relationship.” Hate is a hook that attaches the hater to the hated. 

Sixty-six years ago today another piece of writing about hate –perhaps a little more accessible-- was presented. On April 7, 1949 South Pacific opened on Broadway to shocked audiences. It was a musical that triggered tremendous controversy, but South Pacific went on to become one of the most popular musicals of all time.

Today we might find ourselves humming some of the familiar tunes from South Pacific as background music forgetting that Rogers and Hammerstein had transposed America’s racial hatred to the East so that American audiences could tolerate thinking about their racial issues.

South Pacific had a message that hit home in 1949 and which seems eerily relevant today. You’ll recall that the play is set in an island paradise where American troops are waiting for war, anticipating inevitable combat, danger and death.

At the center of South Pacific a song that sums up the heart of the play. The lyrics of  “You’ve Got To Be Taught” remind us that:

 You’ve got to be taught, before it’s too late;

 before you are 6 or 7 or 8,

 to hate all the people your relatives hate;

 you’ve got to be carefully taught.

The dilemma is that hate causes war but it is also what allows a soldier to kill their enemy. Hate is a perfect psychological fuel. And it is also, in South Pacific, what nearly dismantles the great love story.

So what do we do about hate? This is where the personal really is political. Maybe we need to look at the places in our lives where we hate, or have been taught to hate, and be willing to change that. 

What a lesson that could teach our kids, showing them that hate is a choice and that we always get to make another choice.  

Ezio Pinza and Mary Martin: the final scene of South Pacific.

The Easter Brother

I consider the following to be quite telling about my own personality: I never believed in Santa Claus. I never, even as a little kid, imagined or believed that a man would go house to house in a red suit and bring toys and stockings to boys and girls.

I did, however, believe, until I was ten or maybe even older, in the Easter Bunny. 

In my own defense I have to explain that we lived near the woods and I saw all kinds of rabbits, little baby bunnies and distance-covering jack rabbits, all the time. But I also had two older brothers who, as only big brothers can, facilitated, my belief. Sig and Larry would talk just slightly out of my earshot about The Bunny. “Don’t let her see him”, and “Did you see the basket he left next door?” They also, to make it more convincing, put bite marks on the handles of our Easter baskets.

My brothers died when they were 42 and 48. Now I’m the oldest. At Easter I miss them. I miss having an Easter basket from Lar who –even as an adult—made me one that included the bunny’s teeth marks to remind me just how naïve I had been. And I miss our sibling tradition of finding the family “King Egg”.  As Easter approached we would each decorate our own hard-boiled egg, fortifying them with dye and crayon and competed (Sig and Lar were both went on to become engineers) by ramming our colored eggs together to see whose broke first. 

I also miss dressing up for Easter services, complete with new dress and corsage. The three of us continued to go to church on Easter even when we had walked away from organized religion. We kept this holiday because we all liked the uplifting Easter hymns like “Up From the Grave He Arose”. 

I kept going to church on Easter even as, and after, Sig and Larry were dying because those Easter hymns gave me a weird hope.  It was not a hope of miraculous recovery for  either brother,  or necessarily for a reunion in the “Great Beyond”, but  hope for  my  own  “arose” from the heartache of losing my  brothers,  my playmates,  co-conspirators and occasional torturers.

One of my final conversations with Sig was about my car. I was 40 years old but still easily defeated by my car worries.  Larry, who was then sick, was caring for Sig who was dying, and I called their house in tears to report the impending death of my car. Larry, who was on the phone with me, relayed the mechanic’s opinion to Sig who was lying in what would soon be his deathbed. 

Lar said to me, “Sig wants to talk to you”. I was surprised because Sig’s speech had become painful and very difficult for him. I waited until Larry positioned the phone for Sig to talk. 

“Here’s what you tell them….”, he began, and he proceeded to dictate a set of car repair instructions to convince any mechanic that I knew a nut from a bolt, and that this girl had a brother who would not see his sister taken for a ride.

At Easter I have the best memories of a girl with brothers—of a basket-carrying rabbit who was “just here a second ago” and of making faces to spoil the, “Come on; Say cheese”

Brownie snapshots that Dad took of our Easter outfits.

Apart from any theology, Easter lets me believe in the resurrection of my family, of my all too gullible girlhood self, and in a life that rises, falls, rises and dies over and over as we each cycle through our layers of loss and gain.

The Emperor of All Maladies--On PBS This Week

Last night was episode number one of the PBS TV special "The Emperor of All Maladies". This three-part special is a masterful collaboration by author/physician/oncologist Siddhartha Mukherjee's best-selling, and groundbreaking book about cancer and documentary producer Ken Burns.

I loved Mukherjee's book from page one to the end. He gave us a science story, a history lesson and a very human and humane narrative of what most of us never learned about what cancer is, why it is, and what it means to treat it--and the history of those treatments. His research and writing put everything we say about cancer (including "lets cure it") into a greater context.

Add Ken Burns (The Civil War, Baseball and The Roosevelts) and you know you'll get great images and a sound track that will carry you through all of the inevitable emotions.

Suggestion: Record the series. Just in case you want to save it to share with others, or just in case you want to pace yourself, especially if you are a cancer patient, survivor or caregiver. You can also watch the series any time on the web at PBS.org.

And of course a movie is never able to capture the book--it's always the essence or the flavor of the original. So please also get your own copy of "The Emperor of All Maladies".
It is a book that will help
you understand cancer and why we all struggle with it--as we do culturally as well as personally.

Here's a tiny clip from the PBS documentary:
http://video.pbs.org/video/2365439914/

The Literature of Caregiving: Lucy Grealy and Ann Patchett

Welcome back to the monthly series: The Literature of Caregiving

This month for “The Literature of Caregiving” I bring you two great memoirs and two great writers who happened to also be two wonderful friends. The writers Lucy Grealy and Ann Patchett met in graduate school at Iowa and lived and wrote and struggled and laughed and grew together. They bonded over all the things young women friends do: school, writing, ambition, clothes, men, parties, worries, money and what do be when they grew up. They both decided on Writer.

When I teach Lit of Caregiving or a memoir class I like to assign pairs of books for students to consider and Lucy and Ann are the perfect pair to examine subject and style and content.

Both are wonderful writers and both –eventually—wrote about tragedies. Lucy’s tragedy was in her own life and Ann’s tragedy was her friend Lucy’s life.

Lucy Grealy’s story is cancer—Ewing’s sarcoma at age 9 leading to years of radiation and chemotherapy and then a long series of reconstructive operations, most of them unsuccessful. Her face was destroyed and recreated and lost again as many of the bone grafts didn’t “take” and her facial bones were gradually absorbed, then rebuilt and then gone again. 

Lucy’s stunning book, “Anatomy of a Face” is about her cancer experience but much more about her experience of having and losing a face. She wrote about beauty and how we

perceive it and how it is to be attractive and then to not be and then maybe …and not again. The book describes the physical pain and the emotional pain but primarily she wrestles with meaning and beauty.

Ann Patchett met Lucy years after the original cancer but in the midst of Lucy’s repeated surgeries and reconstructions. (There were 38 operations altogether). She was Lucy’s roommate, neighbor and later—for many years—her caregiver.

That is a caregiver model we don’t often talk about—the good friend who is a caregiver --sometimes in person and sometimes long distance and who goes through the medical crises. But also—as in this story as Lucy’s life devolves into alcohol and pills and ultimately heroin, a caregiver of someone with the disease of addiction.

We forget sometimes in our caregiver world that caring for someone with an addiction or a mental health diagnosis also counts. Those are not the caregivers asking for Family Leave at work or raising their hands at conferences for caregivers. There is still too much shame and stigma. But those may be some of the hardest working, most stressed-out caregivers.

And that is all in the story that Ann Patchett tells in her book, “Truth & Beauty—A Friendship” about her years of being Lucy’s friend and then her caregiver and then having to survive Lucy’s death to be her eulogist.

Incredible stories yes, but also extraordinary books because this pair of books are written by a pair of stunningly talented writers. Lucy was also an award-winning poet, and Ann’s many novels include: “Bel Canto” and “The Patron Saint of Liars” among others.

The incredible testimony to Patchett’s book and to her writing skill is that even though the subject matter is harrowing, “Truth & Beauty” is also uplifting and inspiring as it examines friendship and love and the lengths to which one might choose to go in being a caregiver.

*****

To read more installments of The Literature of Caregiving see past posts on December 8 2014, January 16, 2015, February 2, 2015. And sign up to receive this blog-Love in the Time of Cancer in your email.

Out of the Woods and into the Scary Places That Come after Cancer

Did you win your battle with cancer? Are they having a party for the end of her chemo? Did he triumph? survive? or "beat it"? That's what we hear--especially from those around the cancer patient--but it turns out that may not be what the one with cancer is feeling. Yes, the platitudes and made-for-TV-movies are filled with triumphant, "I can do anything now that I beat cancer". But sometimes cancer is still kicking your ass even after you beat it.

This week in the New York Times, the experienced and articulate Suleika Jaquad, who has been writing about her leukemia, now talks about what happens after cancer, and what happens when the "end of treatment" becomes a never-ending cancer aftermath. The part no one wants to hear--and sometimes, maybe often, the very folks who treat cancer. 

You'll want to read this if you have had cancer so you'll know that what you are experiencing is not just you and that you don't need to "make a gratitude list." And you'll want to read this if someone you care about has or had cancer so you are never tempted to say, "Buck up, you can do anything; you beat cancer." And if you are an employer or supervisor, pay attention to this--you'll want to be sensitive when an employee with cancer returns to work.

Here's the article:
http://nyti.ms/18TYqb3

And Here is Why This Matters:
"A report last year by the American Cancer Society, in collaboration with the National Cancer Institute, estimates there are almost 14.5 million cancer survivors alive in the United States today, and that number will grow to almost 19 million by 2024. Although more and more Americans are surviving cancer thanks to early detection programs, new treatment regimens and awareness campaigns, much remains to be learned about the short- and long-term issues faced by survivors. With long-term survival comes a new challenge: how to keep cancer survivors healthy and emotionally stable after treatment ends."

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.

How We Feel Each Other When We Love

A man and a woman sit near each other, and they do

  not long

At this moment to be older, or younger, or born

In any other nation, or any other time, or any other

  place.

They are content to be where they are, talking or not

  talking.

Their breaths together feed someone whom we do

  not know.

The man sees the way his fingers move;

He sees her hands close around a book she hands to

  him.

They obey a third body that they share in common.

They have promised to love that body.

Age may come; parting may come; death will come!

A man and a woman sit near each other;

As they breathe they feed someone we do not know,

Someone we know of, whom we have never seen.

The Third Body by Robert Bly, from Eating the Honey of Words, 1999

Cancer, Serenity and Changing Your Story

Amanda Enayati was diagnosed with stage four cancer. She had a big job and she had witnessed the New York City 9/11 tragedies, a terrible depression followed.  And then cancer. So she thought she knew all about stress.

Then when her CNN editor asked her to begin a new column about stress Enayati did what came naturally—she started researching stress—thinking there might be a few new facts but that certainly most of what she’d offer readers would be a sharper summary of how to cope with our 21^st century plague.

What was unexpected was discovering how stress was “invented” and to what surprising cultural –and economic ends.

This led to her surprising new book, “Seeking Serenity: The 10 New Rules for Health and Happiness in the Age of Anxiety.”

If you have cancer or if you are a caregiver then you know stress. It’s part of your vocabulary and it’s part of your story—and story is the key word in Enayati’s book about serenity and stress.

As Enayati explains in her new book it’s not really stress that is stressing you out, it is the story of stress that you’ve been told, and that you tell yourself. But can be yours by simply changing your mind—and the stories that you tell yourself.

What she has done differently from every other writer with advice on stress—Enayati went looking for the back-story on stress, and in making sense of the history of stress she has created a map to help us find our way out.

What she lays out for us in “Seeking Serenity” is that while we act like, and react like, stress is a tangible thing that we have to manage and defeat, stress is actually a cultural construct, a social construct, and frighteningly—stress is a marketing construct. 

You’ll either laugh or cry when you read Enayati’s revelations on the role Big Tobacco played in creating the concept of stress so they could market their best-known stress-relievers. (Yep, cigarettes) But the damage was bigger than lung cancer—it was also a kind of cultural cancer. Marketers of tobacco, alcohol, certain foods, and now even treatments, had to –in order to sell us their solutions—first sell us on the belief in stress.

Enayati shows us that stress is a belief system. Think about that: If we believe in stress, and that we are stressed, then we will be perfectly pre-set to buy all manner of stress relief and stress remedies.

Amanda Enayati

This is really a very smart book, and a very new way of looking at stress and personal belief and the simple choices we can make—without the huge life changes that we always think we’ll have to make. And of course contemplating huge life changes simply stresses us even more. 

Could it be that diabolical? Enayati makes a great case for how stress has been marketed to us. Could serenity be that simple? What it that is true? It’s definitely worth reading this book to learn more.

Scientists Choose New Battles with Cancer Cells

In today's New York Times Claudia Dreifus reports on the recent work of James P. Allison who is the chairman of the immunology department at the University of Texas M.D. Anderson Cancer Center.

Allison is a pioneer in cancer treatment with his work in immunotherapy--using the immune system to fight cancer cells. It's a cell on cell battle--yes, still that battle imagery and metaphor--but now with methods that motivate and encourage the body's T cells to fight cancer cells.

This is a brief but very interesting article highlighting Anderson's work and what it means for cancer treatment. I found the history very interesting--19th century patients with infections had healings which suggested that the body fought cancer while it fought infection. Makes intuitive sense, right?

This is also--again brief--the story of a cancer patient and a cancer caregiver who is also a cancer researcher. That's  CancerLand all in one.

Take a look. and big thanks to Claudia Dreifus for this news and background.

Here is the link to the article:
http://nyti.ms/1wLU4c8