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