Practicing Discernment

One friend asks, “Should she change jobs?” Another thinks about changing her whole career. A coworker debates, “Should she buy a house or continue to rent?” Someone else talks about graduate school versus yoga teacher training. And then in CancerLand there are so many decisions--which doctor, which treatment, more? or less? or Never?

“A choice between goods” is one definition of discernment. Not right or wrong, good or bad, but a choice between goods.

But how do you “do” discernment?

Years ago my spiritual director gave me this list of tools for discernment:

Prayer

Quiet

Sitting still

Asking God

Listening

Get quiet and listen for the subtle

Think and feel

Wait

Then use your gut, your courage and your integrity.

Another good discernment practice, if you have time, is this:

Fully describe option A to yourself: the graduate program, the classes, location, books, homework, money, and benefits, people. Declare (to yourself) that this is the choice you have made. Live as if that is the final choice—that and only that for two weeks. Pretend to yourself it’s a done deal and go about your life as if that is true. Pay attention to your body, energy, heart and head.

After two weeks again fully commit yourself, but now to option B. Again, make full mental commitment—two whole weeks. Now what do you notice or sense in your body, mind, heart, energy? Write about what you notice and sense. What messages do you get?

Talk to people who have chosen either options –or similar ones—and then pray for a sign.

The Swan

Last night—I was feeling awkward in my own life—then gratefully I remembered this poem that I read a few years ago at a memorial for our friend Will.  I am in love with this image of ungainly, ungraceful swan that lumbers and is awkward.

That’s not what we picture when we think swan—the one in the water, the one we see gliding, regal. And now Rilke says that is like us and I think, “Yeah, that is like me and that is why I like poets—they can put words to this feeling and this fear of my own bumbling, rope tied, tripping over to-do lists life:

"This clumsy living that moves lumbering
as if in ropes through what is not done,
reminds us of the awkward way the swan walks.
And to die, which is the letting go
of the ground we stand on
and cling to every day,
is like the swan,
when he nervously lets himself down into the water,
which receives him gaily
and which flows joyfully under
and after him, wave after wave, while the swan,
unmoving and marvelously calm,
is pleased to be carried, each moment more fully grown,
more like a king, further and further on."

The Swan, by Rainer Maria Rilke, translated by Robert Bly

Caregiver Comedy with a Big Dose of Help

“The Dutiful Daughter’s Guide to Caregiving: a Practical Memoir.”

I was introduced to this new book just this week. As soon as it arrived I opened to a random page and started laughing. Now, as you know, we look far and wide for the chuckles in caregiving but this book has super powers: honest practical help in the complexities of caring for older adults—two aging parents—and a lot of laughter—which (writing truth here: humor often comes from telling the truth) lightens the load and reassures us that we are not alone in this crazy caregiver game.

So yes, Judith Henry has written a memoir and guide. One of my favorite chapters is called, “We Were Never the Waltons”. Doesn’t that just nail it on sibling relationships and caregiving?

You’ll laugh. You’ll recognize yourself—and others—in this book. And—this matters: it’s a small book so it will fit in your hospital visit carry-on bag, and because it has a cute as pie cover you can give this as a gift to friends who are heading down the caregiver path. You’ll be giving them actual wisdom without seeming preachy.

“The Dutiful Daughter’s Guide to Caregiving” by Judith Henry

Helping Caregivers to Manage the Meds

The role of a caregiver is complex.  There are many different responsibilities that are rolled into the work of a caregiver.  From support system to health aide, a caregiver provides for the mental, emotional and physical.

There are many health service developments making stunning breakthroughs and extending longevity and quality of life but there are still so few resources for the millions of caregivers out there faithfully serving loved ones.

One of the key responsibilities of a caregiver is managing medication.  For many, judging multiple doses, endless bottles and continuous renewals takes up precious time that could be spent doing other things.  Here are a few tips to better manage medication and keep you from wondering, “Did I administer that dose correctly?”

Use Technology

Your phone has the ability to set reminders and alarms that can be repeated and labeled at set times every day. This is an easy way to use a tool that has evolved greatly over the past few years.  Gone are the days of days of sticky notes on the fridge or intense spreadsheets that could be marked or read wrong.  Now there is a simple way to set dosage reminders right at your finger tips!  

Simplify Your Pharmacy

You may need some practical tools. PillPack is a company that is transforming the pharmacy model to help patients and caregivers who are managing multiple medications.  They are hoping to reduce medication errors, which, of course, will reduce hospitalizations and emergency room visits.

This is done through a service of pre-sorted medications that include labels of when and how to take each pill.  PillPack coordinates refills and delivers to you: they guarantee on-time (and free!) shipping. You have the ability to manage medications online through a dashboard that includes tracking shipments, billing information and a calendar of all of your critical dates. The dashboard itself is a tool for caregivers. It gives you the ability to manage medication without an additional call to the doctors or insurance company.

Keep A Schedule

Remind your loved one pair’s morning pills with making the coffee and evening pills with dinner.  If you associate the medicine you administer with certain medicines with other, everyday tasks, it will become more of a habit than a hassle.  Always be sure to be complying with the specific restraints of medications by checking their labels!  Make sure you know if a medication needs to be taken with food before giving it on an empty stomach.  

 Always remember to take time for yourself. Taking time away is key for your mental, physical and emotional health.  Make sure, as a caretaker, you are setting time aside for a hobby, a support group, or just a weekly coffee date.  Not running yourself into the ground is a key component of being able to care for a loved when dealing with cancer.

If you are not in a healthy state, you will not be able to manage medicine for another.  Make sure you staying alert to warning signs of burning out.  Hopefully these tips will help with your medicine management and free up time that can be spent elsewhere!

*********

Today’s guest blogger is Hannah T. who works for an online pharmacy in New Hampshire and who knows a lot about medication management.

Thanks Hannah!

Thornton Wilder's Book of Sorrow

Thornton Wilder wrote:

Without your wounds where

would your power be? The

very angels themselves

cannot persuade the

wretched and blundering

children on Earth as can one

human being broken in the 

wheels of living. In love’s

service, only the wounded can serve.

Shakespeare Joins the Celebration

In honor of yesterday's landmark Supere Court decision here are a few words from William

Shakespeare on love and marriage:

Let me not to the marriage of true minds

Admit impediments. Love is not love

Which alters when it alteration finds,

Or bends with the remover to remove.

O no! it is an ever-fixed mark

That looks on tempests and is never shaken;

It is the star to every wand'ring bark,

Whose worth's unknown, although his height be taken.

Love's not Time's fool, though rosy lips and cheeks

Within his bending sickle's compass come;

Love alters not with his brief hours and weeks,

But bears it out even to the edge of doom.

If this be error and upon me prov'd,

I never writ, nor no man ever loved.

---------Sonnet 116--William Shakespeare      

Cancer and Fashion

I’ve owned this book –“No Time to Die” by Liz Tilberis--for years and never sat down to read it until now. That makes no sense to me because this is a book about two things that I love to read and write about: Cancer and Fashion.

Yes, how about that for a combination? And it works.

Liz Tilberis was the Editor-in-Chief at Harper’s Bazaar. She was living quite a glamorous and very hard working life—magazines are hard work—when at 41, she was diagnosed with Ovarian Cancer.

This book has all you would expect: stories of celebrities and designers and oncologists and treatments…and the most expensive cancer wig you have ever heard about. Let it be said Liz Tilberis looked as good as any woman can look with cancer and brutal chemo treatments.

But the book has more than the typical cancer memoir and more than a fashion editor’s story. Liz was also a Mom and wife and great friend—and British, and this book covers all of those topics too.

If you loved Diana Spencer—there is a lot of Diana in this book. If you liked “The Devil Wears Prada” there is a lot of behind the scenes for you here, and if you or a friend has Ovarian Cancer you’ll see what you have in common and what the special perks are for the wealthy and well known in Cancer Land. Yes, there is a teeny bit of a social hierarchy in cancer.

I loved this book and loved learning about Liz Tilberis. It is no secret that she died of her cancer. But what I can take away is how she lived with cancer and the choices she made to make her life as an executive and a Mom –also with cancer.

What if Cancer Comes Back?

So much of the cancer caregiver’s role is naturally about caring for their loved one. And so, of course, there is a great deal of worry about that person. But this week a conversation with a friend brought me up short.

I was asking about her husband who has cancer and we talked about the usual—treatments and surgeries and money and family—all the parts of life that are touched by cancer. But then she said, “There’s something else”, and she looked very uncomfortable. So I waited and she said, “I’m worried about me.”

“We’re both worried that his cancer is going to come back”, she went on, “and we can talk about that, but what I can’t tell him is that I’m not sure I can do this again.”

Oh! I thought, “Oh!”

All of this talk about being a caregiver and dealing with cancer and talking about sex, and I was missing what cancer caregivers might most need to talk about: the scary shame of hating cancer, and the painful, often secret truth, that we do not want to do this again.

Part of it is that the caregiver is in a secondary role: The patient is the lead and the caregiver is the supporting actor. But also we get caught in our own “saint” game and can get trapped by being helpful and loving and we fall head over ass into the expectation that we will: roll with the punches; go with the flow; do whatever it takes, but then, when after the first round of cancer we might think (most often to ourselves) “I do not think I can do this again.” 

Part of it is the timing and the dynamic. When cancer comes the first time we really don’t know a dam thing. We read pamphlets and go to support groups but we are caught up in the rapid current of cancer and treatment. We mostly just do everything because there isn’t time not to. The pace of care and the newness and the scariness and the constant adrenaline pushes us along. 

But after a period of time, maybe a year off, a kind of subtle terror creeps in: What if cancer comes back? Then what? Now I know, now I have a sense of this nastiness and exhaustion and fear, and in a way it’s harder because the adrenaline of shock isn’t there to help us. And because there is less help around us when cancer goes from crisis to chronic.

So I got to tell my friend that she is not alone and that I have been there and truthfully, can still go there: “Can I do it again?” I would most likely—our culture has no place for people who run out on cancer—but having that secret or that shame just makes it all so much harder.

No, I don’t want cancer to come back—for his sake and for mine. And I want all of us to be able to admit that. Like the motto of the Amy Winehouse House says, “Fuck Cancer.”

What the Living Do

On the theme of sibling caregivers, here is a poem by Marie Howe:

 “What the Living Do” 

Johnny, the kitchen sink has been clogged for days, some utensil probably fell down there.

And the Drano won't work but smells dangerous, and the crusty dishes have piled up

waiting for the plumber I still haven't called. This is the everyday we spoke of.

It's winter again: the sky's a deep, headstrong blue, and the sunlight pours through

the open living-room windows because the heat's on too high in here and I can't turn it off.

For weeks now, driving, or dropping a bag of groceries in the street, the bag breaking,

I've been thinking: This is what the living do. And yesterday, hurrying along those

wobbly bricks in the Cambridge sidewalk, spilling my coffee down my wrist and sleeve,

I thought it again, and again later, when buying a hairbrush: This is it.

Parking. Slamming the car door shut in the cold. What you called that yearning.

What you finally gave up. We want the spring to come and the winter to pass. We want

whoever to call or not call, a letter, a kiss--we want more and more and then more of it.

But there are moments, walking, when I catch a glimpse of myself in the window glass,

say, the window of the corner video store, and I'm gripped by a cherishing so deep

for my own blowing hair, chapped face, and unbuttoned coat that I'm speechless: I am living. I remember you.

--Marie Howe

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