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

Spring is Coming

It’s March now and that makes me believe that spring is nearby. Today we did a three-mile walk that went up and down some little hills.  We were huffing and puffing while we kept up a pretty good pace. As we made the turn to come back home I said to John, “Do you remember the summer after your first surgery; you could not walk from our front door to the car?” 

And he did remember. It’s a shock still, how that cutting into flesh and being sewn back together took away so much strength so fast. He looked the same but could not walk at all. 

Now we hike and snowshoe and do yoga and dance, and we push each other to do more.

That first summer of chemo changed so many things: no movies, no malls, no grocery stores. Even a tiny bit of air-conditioned air caused excruciating pain, and he would choke when cold air hit his throat. He couldn’t even open the refrigerator door without a jolt of pain from the cold air. I had to learn to cook, and sister Susan had to be my cooking sponsor. 

That turned out to be one of the big gifts of Cancer Land—I learned to cook, and I learned that I liked to cook, and I learned I could be a good cook. Who knew I had that in me?

But that spring when it all began was so shocking and crazy. 

I think about this today as we hike and then dance around the living room and get dressed to go out for dinner. So many things changed. We grew from them and with them. I know that isn’t everyone’s path. Sometimes cancer ends relationships as well. It can be too much. The coping mechanisms don’t mesh, or the fear is paralyzing. No one can be blamed for that. It can be just too hard sometimes. 

So tonight while I feel spring coming, I also feel gratitude and grace.

Smokin' Hot Resentment

It comes around again. No matter how much I know and how much I try to change this one comes around again. It’s sneaky too; I call it by other names: I say, “I’m annoyed” or “hurt” or “challenged”. Sometimes I play the “I’m too spiritual for my shirt” game and think about how sad it is that he or they are less spiritually evolved than me.

Yes, I even bring God into it. 

And then I realize, “Oh, this is resentment! (again)—and it’s mine!”

Last week I heard a woman talking about how much she resented her ex, and she talked about his ex who was the reason they are now ex, and how when they were together she was resentful at him for not being more resentful of his ex. Hearing her describe that tangle made me laugh—which, gratefully began to help me take one step out of my resentment.

The other thing that always helps me release the stickiness of resentment is this saying that I learned in Alanon:

“Resentment is like setting yourself on fire and hoping the other person dies of smoke inhalation”.

(The matches are always in my pocket.)

The Literature of Caregiving: Jane Kenyon and Donald Hall

Welcome back to The Literature of Caregiving:

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 their life experiences into poetry. So we have poetry collections from each of them describing each turn and phase of their roles as caregivers and as patients.

It’s fascinating to read their work side-by-side and to trace the intrusion and trajectory of cancer through their loving—and sexy—marriage.

I read the book, “The Best Day/The Worst Day” by Donald Hall. It is the story of the last year of Jane Kenyon’s life, her death from leukemia, and the story of their relationship, and a marriage of two writers. 

I am interested in writer’s lives and especially in how two writers lived together doing their work, and making lives as freelance writers and teachers. But I also read Hall’s book because I have also known since attending Bennington that his story is also the story of losing Jane and grieving that loss. 

My first year at Bennington was the year after Jane’s death and Donald’s readings that year and the next were of his poems/letters to Jane after her death. He was a grieving man.

Each year when Hall came to Bennington to read the perspective was different—the love always so strong, the advocacy fierce, but his point of view changing, enriching, deepening.

I know that I re-read this book to look into the face of grief and death. I also was clear that I started at the back of the book, the ending and the postscript because I wanted to see right away what Donald would say about Jane’s death. He is then writing ten years after Jane’s death. So I know he has survived. That is both my hope and my fear. 

Donald Hall cared for Jane for 15 months: chemo, bone marrow transplant, all the horrible side effects—many of them familiar to me now: weakness and sore mouth and hair on the pillow and in the sink. Hall describes the process of dying and the feelings of loving someone who is very sick and then dying.

I can feel the howl when they are told leukemia is back and there is nothing more to do. Jane dies eleven days later. Hall loves her so much but he is clear about not trying to make her death harder for her by loving her in a way that might make it harder for her to let go into death. I’m moved by the selflessness of loving in that way. 

Later I read, “Unpacking the Boxes”, another memoir by Donald Hall. This one is written 14 years after Jane’s death and in it Hall recounts much of the story that he wrote in “The Best Day/The Worst Day”…but now he is farther from it and he reveals even more.

What strikes me was how much he missed being her caregiver. The details of daily caring for her in leukemia were so hard and he was the primary caregiver day and night. It meant connection through the best and the worst.

After she died he missed her of course but he was surprised that he also missed the hard, tiring work of the physical care for her. That I understand too. There are days when I know I am benefitting from John’s cancer. It’s a connection and a unique way of being in relationship. No one would wish for this but I am aware that it is a gift of sorts. It sets a strong priority and it makes a bond.

But I also make this note to myself: One of the reasons that Jane’s death is such a shock to Hall and Kenyon and feels so unfair is that Donald Hall was 19 years older and he had colon cancer years earlier that had metastasized to his liver. They had already been through CancerLand with Hall’s surgeries, chemo, cancer recurring—all of it his. And then the sharp, unexpected turn: Jane gets leukemia and she dies one year later.

The other thing that Donald Hall—quite bravely—writes about in “Unpacking the Boxes” is the way his energy became sexual. He describes his sexual fantasies and his sexual behavior while Jane is dying, and after her death. He shares the voracious fantasies that would flow thru him and how, after her death, he acted on them.

Here is a poem by Jane Kenyon written when she was ill:

    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

And here is a poem, “The Painted Bed” by Donald Hall:

Even when I danced erect
by the Nile’s garden

I constructed Necropolis.

Ten million fellaheen cells

of my body floated stones

to establish a white museum.

Grisly, foul, and terrific

is the speech of bones,
thighs and arms slackened

into desiccated sacs of flesh

hanging from an armature

where muscle was, and fat.

I lie on the painted bed

diminishing, concentrated

on the journey I undertake

to repose without pain

in the palace of darkness,

my body beside your body.

--Donald Hall

[The Literature of Caregiving is a monthly series here on Love in the Time of Cancer--you can read previous installments on December 8, 2014 and January 16, 2015]

A Married Valentine's Day

I have always loved Valentine’s Day. It is the one holiday that is totally frivolous and which has the pleasure of gifts to be given but without guilt. But this year Valentine’s Day almost got by me. I got my Valentine’s Day wake up call just in the nick of time. 

This alert came to me in the most casual way but the result was an epiphany. I was leaving the office early one day last week, and Michele, my co-worker, who is smart and single, was leaving at the same time. Walking to the parking lot I asked her plans for the evening? “I’m going to the mall to get ready for next Saturday”, she whispered conspiratorially. 

She was including me in something, but I didn’t get it right away. “For Valentine’s Day,” she said, grinning. Then I got it.

She was going to buy lingerie for her Valentine date. Michele has a very nice boyfriend; I’m sure she’ll get flowers or candy but I’ll let you guess what he’s getting. 

I was flattered that my younger friend included me in her knowing laughter. She assumes I “get it”; that Valentine’s Day is not just for kids. I got her point, but my own married state brought me up short. 

No, I didn’t forget Valentine’s Day. I bought Dave a gift, but I didn’t think about the need for something red and lacy. 

I was a single for a long time before we met and in those years I gave many a salary to fine lingerie stores. I remember swearing that I would never be one of “those women” who wore flannel to bed. But now, later,—and in upstate New York’s winter--I see exactly how it happens.

Maybe single women put more energy into romance. We married ones complain that husbands forget birthdays or give appliances for presents, but friends, look in your lingerie drawer; are you holding up your end of the fantasy-romance bargain?

I think of Nora Ephron, who wrote in her novel, “Heartburn”, about married versus single. She said:

“One thing I have never understood is how to work it so that when you’re married things keep happening to you. When you are single things happen: You meet new men, you travel alone, you learn new tricks, you read Trollope, you try sushi, you shave your legs. Then you get married and the hair grows in.”

Well, I do read Trollope and I love sushi, but hair grows. How does that happen?  Maybe by letting Valentine’s Day come and go.  

I know, I know, I can hear the screaming. Do I sound like Helen Gurley Brown? I’m actually OK with that; I adored her writing and her brains. She wrote the first smart career book for women but cleverly named it, “Sex and the Single Girl” so it flew off the shelves. Yeah, I’m a feminist who doesn’t think sex is sexist. 

When I add it all up and compare my single versus married days the pluses fall on the married side. This good marriage makes me a better woman, and that makes me a better employee, and writer, and friend. 

John is the love of my life. So doesn’t the man who warms up my car every morning deserve something hot for Valentine’s Day? It’s married confidence and feminist energy that let’s me enjoy this choice. 

We Measure Out Our Lives in Tubes

It was T. S. Eliot who famously said “I have measured out my life with coffee spoons.” What a lovely image for and from a great poet. But this week I glimpsed another way I can measure my aging life: I can count the tubes.

Yes, you might remember going to Grandma’s house, or maybe to your Mother’s and her medicine cabinet had a million squashed tubes of this and that. Some were shiny, some rusty, and some gooey with missing caps, and you thought, “How does that happen?”

Maybe you also remember when your medicine cabinet had aspirin, birth control, Vaseline and maybe an antibiotic? And then as you got a few years older, there are a few more things and then, suddenly it seems, you (like me last week) look at that basket under the bathroom sink and its full of tubes!

We now have all manner of tubes with creams, ointments and lotions. They are specialized and generalized. We have tubes with goop for every body part and every disturbance. They are oily, creamy, pink, clear or shiny. They range from first aid uses to germ killing to fungus battling to skin soothing.  Some I bought off the shelf and a few were prescribed. 

But this is the new measurement of my life—no longer romantic coffee spoons or lovers past. Now I measure my life in tubes.

You Can Say No to Chemo

No, you probably don’t want to take this book to the oncology center to read in your vinyl Barcalounger, and it’s probably going to be inflammatory to show it to your oncologist when you have your one-on-one meeting. But it is not a bad idea to read or at least skim this book if you have any interest in alternatives or treatment options.

Laura Bond is a certified health coach—so she’s not a doctor, but the folks she interviewed are. And she did an amazing amount of research—and really dug into studies on the effects and the effectiveness of chemo and radiation. And, you already know this, both of those treatments cause cancer as well as cure cancer. The strategy with most chemo recipes is to kill the bad guys faster than the good guys and hope the good guys don’t turn bad. We do a lot of things with that kind of gamble so lets not totally bash chemo and radiation.

But—wouldn’t you like to know about the other options—the ones your oncologist is not going to mention and the ones Big Pharma is not going to support? Yes, you do. 

Some of those alternatives are going to seem wackier than wacky, while others will have you going, “Huh, really—that kinda makes sense.” Heat as a cure? Yep, allowing a fever to rise as a remedy? We’ve done that for years. Some of the extreme diets that Bond reports on had me rolling my eyes, while—surprise to me—the one about shaking just strangely enough—made sense.

No one—including Laura Bond—is saying walk away from chemo and radiation—but she is saying: read, ponder, ask, think, ask again…and try some things. What she’s given us in this book is a batch of solid research and resources so you can select ones you want to look at further.

The resource section in the back of the book is very helpful—it will give you contacts and phone numbers and websites to make your research so much easier.

What Kubler-Ross Never Said

Book after book, and class after lecture, has given Elizabeth Kubler-Ross credit for something that she never said, and as a consequence penalized people who were grieving.

You know the famous five stages of grief. Perhaps you too were told that your grief was "incomplete" or "delayed" or "out of order". You may even have been prescribed medications or therapies because your grief didn't quite fit the timeline or order of the Kubler-Ross process.

Like any urban legend or quasi-scientific fact it is much harder for the truth to stick as tightly as the error.

So: Elizabeth Kubler Ross never said that people grieving the loss of a loved one would go through five stages. She never said there was a direction to those stages, nor did she give a suggested timeline. In fact, she didn't work with people who were grieving the death of their loved ones.

Elizabeth Kubler-Ross worked with people who were terminally ill--who were in fact, themselves, dying. It is those dying people that she studied, observed and wrote about. It is the dying of whom she suggested there may be stages to how they process their diagnosis and the consequent dying.

Can you imagine the grief we have caused in saying to someone who has lost a loved one, "You are in denial, or bargaining, or in the anger stage--soon you will get to acceptance"? No wonder people who grieve --healthfully--for many years choose to stay silent. What amend can we make?

Ah, but here comes an article on another way of supporting someone who is grieving. In the New York Times article below by Patrick O'Malley, we see a therapist take a new view of "delayed grief" and more correctly understand depression associated with grieving.

Read on and please do share this one.
Here's the link:
http://nyti.ms/1wkdrre

And forgive Elizabeth Kubler-Ross for what she never said.