Asking for help is important for both patients and family members in CancerLand. But the struggle to ask for help is not unique to caregivers. And the greater gifts that may accrue from asking for help extend far beyond our own homes. Here is an essay from guest writer Amy Halloran

on asking for help:

For a long time, I have been wondering why we are afraid of help – afraid of needing it, asking for it, or accepting it. I remember when this wonder began, almost 20 years ago. My baby was a few weeks old. I stood on the stairs with a basket of laundry, floored that I had just rejected my mom’s offer to wash my clothes.

Why? Did I need to prove to her that I would be a good mother when she wasn't around?

I knew my actions were ridiculous, and yet I didn't put down the laundry, go back upstairs and say, yes please, I could use the help. Because I couldn't use the help. I was terrified and more than tired, and yet I didn't dare reveal my vulnerability. This wasn't just about me and my mom. Friends had given us coupons for meals and I couldn’t use them either. Those coupons still sit in a file in my husband's office, and I am still curious about why help is so hard to ask for, and receive.

I thought about this from a new angle, reading Amanda Palmer's book, The Art of Asking. She built her career as a musician around habits of inviting other performers to join her, and gained notoriety for a wildly successful crowdsourcing fundraiser.

The success of that campaign left her wide-open to criticism, as success will, especially for women. Her book grew out of a TED talk where she talks about vulnerability and the necessity of drawing others into our projects.

I got infatuated with the practice of asking. What if it were okay, especially in our highly independent nation, to ask for help? Why is there such a stigma on need? Don't we owe each other support?

I grew up in a safe environment. I had liberties to read and play, to explore nature and trust my friends. We played levitation games in basements. Five or six girls sat on the floor cross-legged, around one girl who lay in the middle. We put two fingers of each hand underneath her, and the girl who sat at the head told a story that ended with the words, light as a feather; we said these words one by one, and then all at once. The leader pushed us through some more phrases, and then we, quiet and excited, helped our friend hover off the floor. Or so we believed.

Such faith and support! If only we could walk around all day feeling light as a feather and held up by our friends. Amanda Palmer refers to a similar experience; crowd surfing at a concert, and being held up by strangers who immediately become friends because of the trust you lend them.

Why couldn't I, as a young mother let people lift me? I wish we felt free to ask more of each other, from our society, and as individuals. How about universal day care to honor the ideals of motherhood? I think our municipalities owe us more than safe water and education; I think we also owe each other good housing, access to affordable and nutritious food, and plenty of respect.

We deserve freedom, but respect doesn't fall like rain. How can we move from platitudes toward equity? I was protected by social umbrellas that let white girls like me float on the fingers of friends. My two sons are cushioned by their race and class, and they get to dream and explore in ways I wish everyone could. My older son dives deep into the land of plants. My younger son falls asleep thinking of new ways to make paper airplanes.

That levitation I did in basements was romantic, but also a metaphor for the practical ways we can reshape our world. My friends and I believed we could hold up the girl in the middle. We were not afraid to work together and chant a phrase that helped us get to our goal. I don't know if we ever lifted each other a millimeter, but it felt like we did.

I would like to find as an adult the same conviction. I would like to be unafraid to ask for help, and I would like a world full of environments where everyone felt the same security. How can we foster safety for kids who are living in crisis and poverty? What kind of social reform do we need to make asking for help, with simple things like dishes, and more complex ones like healthcare and fair housing, an okay thing?

I think there is a link between social justice and interpersonal support. Maybe we need to work backwards toward belief, that fundamental element of trust, before we can work forward to a world that more resembles the one we think the constitution guarantees in America. 

****** 

 Amy Halloran is the author of:

 THE NEW BREAD BASKET

How the New Crop of Grain Growers, Plant Breeders, Millers, Maltsters, Bakers, Brewers, and Local Food Activists Are Redefining Our Daily Loaf (Chelsea Green, 2015)

Stories & recipes Zester Daily

Website AmyHalloran.net 

Malignant Metaphor by Alanna Mitchell

In CancerLand we talk a lot about fear. And the fear of pain, nausea, chemo, surgery, exhaustion and the one million accompanying losses which are legitimate to a cancer diagnosis or to being a cancer caregiver.

But there is another kind of cancer fear that is widely felt though less spoken about. Alanna Mitchell names that fear and dissects it powerfully in her new book, Malignant Metaphor,

published this week by ECW Press in Toronto.

The subtitle of her book is, “confronting cancer myths”. And there are many. Mitchell was compelled to write about this after two family members had serious cancer diagnoses. She learned, as most readers here know, about the confusion and inconsistency and the struggle to get straight answers. But Mitchell also took on the surrounding trauma and stigma.

Malignant Metaphor covers the implied blame that accrues to cancer patients. The sense that cancer happens because someone didn’t do something right: you didn’t eat right, exercise right, express emotions right. She calls cancer myology an “irreconcilable trifecta of blame and anxiety.” 

She looks at the cultural beliefs that are now mostly unconscious but which, nevertheless, control and shape our thinking: “For as long as humans have written words, we have portrayed disease as an indictment of character, proof of a secret sin, or as punishment by an unseen but powerful force.”

This is a book for cancer caregivers and family, and especially for professional caregivers and students. Examining these myths and deep beliefs will help all of us to change the system of care in CancerLand.

September 11, 2001

Even the dead weep at a time like this.

All those on the other side, making preparations to welcome such a large group.

Death is going door to door in New York City walking past doormen, going up dark stairways, down halls and taking the train to Long Island and Connecticut and getting off at little Cheeveresque stations in the suburbs.

Death nears exhaustion, leaning in one more doorway, waiting for the buzzer to be answered. Hesitating, sighing, tired.

She has tears in her eyes as she visits another house, and another and another.

At night death goes down to the site and sits on the rubble wishing it wasn’t true. 

Some of the dogs come and sniff at death, then back up and give her a funny look. 

Even death is too tired to be moved.

Love After Love--Derek Walcott

The time will come

when, with elation,

you will greet yourself arriving

at your own door, in your own mirror,

and each will smile at the other’s welcome.

and say, sit here. Eat.

You will love again the stranger who was your self.

Give wine. Give bread. Give back your heart

to itself, to the stranger who has loved you

all your life, whom you ignored

for another, who knows you by heart.

Take down the love letters from the bookshelf,

the photographs, the desperate notes,

peel your own image from the mirror.

Sit. Feast on your life.

~ Derek Walcott

A Promise--Your Experience Can Benefit Others

In Alcoholics Anonymous there is a saying—one of the “Promises”—that says, “No matter how far down the road you have gone you’ll see how your experience can benefit others.”

In AA that generally means that even if your addiction took you to some pretty bad places, and you have regrets, the day will come when that exact experience will allow you to help someone else. And yesterday I listened as that “promise” played out in CancerLand.

A friend of John’s has a new diagnosis. His cancer is stage three, and it’s scary. With one phone call he was catapulted into CancerLand and his wife and children with him. He knew about John’s cancer and he called with questions.

I sat in my office and listened to John as he talked on the phone in the living room. Eavesdropping—absolutely! As I listened to John’s side of the conversation I knew what was being asked. “What do stages mean?” and “This book, by Mukherjee, is it helpful?” and “Did you have to get a port, and does it hurt?” I could also hear the questions that were not being asked and the ones that the friend didn’t even know yet that he should be asking. 

My heart hurt as I listened. And yes, I could barely stay still. I confess that I --only twice --scribbled notes and handed them to John while he was on the phone, “tell him about waterless shampoo”, and “tell his wife to call me.” I realized that much of what they are facing is best shared with the caregiver—because I could also hear how many details John didn’t remember because his chemo exhaustion was so severe when he was living through

it.

Finally, I stopped listening from the other room and just went to sit in the living room and curled up in a chair listening as John so caringly talked about what was hard and what was not, and what to do about work and money and food and first aid. I just sat in the chair with my hand on my heart for John and for his friend, such a new traveler in this scary territory.

After the call we sat and talked about what we each remembered, what else we could do for this friend, and what we wished we’d known at the outset and what no one can tell you until it happens. 

But I knew for sure that John’s cancer had generated another blessing—even though he had gone so far into pain and exhaustion and logistical hell when the surgeries and chemo dominated his life, here he was living the promise and seeing that, “Your experience can benefit others.”

Fear and Language Effect Choices in Cancer Care

How do we take apart the statistics and the estimations about which treatment is effective versus which care is necessary? What are the factors that guide you and your doctor in estimating your first step and then a next step?

The article (link below) below from today’s New York Times discusses the language of mortality rates, recurrence rates, and overtreatment versus unnecessary care. While the writer, Lisa Rosenbaum is using examples from breast cancer; this is an important article for anyone facing a cancer diagnosis or decisions about levels of care and treatment. 

She makes an important distinction between “over-diagnosis” and “overtreatment,” and she explains how fear and perhaps your fear temperament can make a difference in how you interpret what a doc is telling you.

She makes the other crucial point that “overtreatment” is not the same as “unnecessary care.” Again, your temperament—and maybe the doctor’s communication skills—are going to have an impact on your decision-making.

Do take a look at this brief but important article, and please, share this one with folks you know in CancerLand. 

Here's the link:

http://nyti.ms/1KPqOXV

What's the Upside to the Trauma of Cancer

The odds are pretty good that if you have been hanging out in CancerLand you have experienced some trauma. It might be your diagnosis or the reality of your treatment or how the “not too bad” side effects turned out to be horrendous. OR, if you are the caregiver, the trauma is again that day of diagnosis and then the shock of exhaustion and the pain of having your body flooded with adrenaline for months on end. Plenty of trauma and yes, therefore plenty of post-traumatic stress.

But now there is some really good news about trauma and cancer. It turns out that there is also something called Post-Traumatic Growth, which also accrues to patients and caregivers in CancerLand.

I’m learning about this in the new book called “Upside—The New Science of Post-Traumatic

Growth” written by Jim Rendon, a veteran journalist.

Rendon spent years interviewing social scientists, physicians and survivors of trauma—all kinds of trauma and much of it medical and cancer trauma-- and his book show us that it is truly possible to thrive and not just survive trauma. That business about “what doesn’t kill you makes you stronger” turns out to be true. But it’s even a little better than that because God knows we are strong but in “Upside” Rendon shows that we get a joy and happiness boost as well.

This book is hope in hardcover for so many of us, and it is validation as well, that being happy after the trauma of cancer is not a sign of denial.

This is going to be an important book for therapists and coaches and counselors and especially for folks in oncology and cancer care. We can now back up our promises with science and research, when we say that no matter what happened, you can be happy, joyous and free.

The Literature of Caregiving: Cancer Vixen

Graphic novels—also called “comics” --have become so popular with readers of all ages that many bookstores have stopped segregating them on a single shelf and now integrate them with traditional books and related categories: fiction, nonfiction, parenting, health, memoir. 

This year Alison Bechdel’s graphic memoir, Fun Home was adapted for Broadway and became the Tony award-winning Best Musical of 2015. So it makes sense that graphic novels and graphic memoir are having a moment. So we can find them in the Literature of Caregiving and The Literature of Cancer genre.

One of the graphic/comic cancer books that I especially love is Marisa Acocella’s Cancer Vixen. Acocella had long been a cartoonist for The New Yorker, Glamour and Modern Bride magazines when she took a flying leap and wrote a book about her experience with breast cancer. 

Diagnosed just a few months before her wedding, Acocella provides a powerful visual story about getting the news, her changing relationship with her fiancé/husband, and the trials of treatment and the terror of being uninsured. 

Acocella also includes her dilemmas dealing with shoes, clothes, lipstick, girl friends, shopping and tribulations at her job, making it one of the funniest and most honest cancer stories. It is a mad combination of Girly-Girl advice and fierce advocacy.

Another graphic (in every sense) book about cancer is “Cancer Made Me a Shallower Person” by Miriam Engelberg. Engelberg was a cartoonist living in San Francisco and her book is a memoir created by a series of comics that take us through her cancer journey—first diagnosis, treatments, family, workplace, second diagnosis, more treatments and her internal reactions.

A couple of things set this work apart from Cancer Vixen: unlike Marissa Acocella, Engelberg was not a trained cartoonist, but her outsider-naïve style lends an air of vulnerability and immediacy to the work. Unlike Cancer Vixen, Engelberg’s book does not have a happy ending. She died a few months after the book was published.

Both of these books are funny and inspiring. At the center of each story is a view of the ways that many of us react to difficult things. For Acocella and Engelberg it’s cancer, for you or a friend it could be divorce, aging, trouble with kids etc.Yes, there is humor in these stories, as well as pain and hope and honesty.

****

The Literature of Caregiving is a monthly series here at Love in the Time Of Cancer. 

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