Triangles and the Way Out of Victim

This morning in church we prayed these words: “But only say the word and I shall be healed”, and I almost laughed out loud.

This week it was three words that words that jump-started some crucial healing for me: The Karpman Drama Triangle. That is a psycho-social theory developed by Stephen Karpman. In it he describes the cycle-- or triangle --of how we move from rescuer or persecutor to victim—always cycling through to victim, victim, victim. I stumbled on this in some unrelated

research but there it was: triangles, rescuing, blaming and victims. The very words that I needed to hear and heal.

It was perfect timing. I realized that I have the bad habit of trying to out-victim the victim in my relationship with John, and in other parts of my life as well. Karpman would simply say, “Uh huh.”

Here’s where it gets’s tricky: cancer care. People with cancer—those in the throes of chemo and surgery are kind of victim-y and cancer caregivers—those in the midst of physical and emotional exhaustion are wonderfully victim-ish, and those surrounding both of them make perfect persecutors: “You should”,  “You never should”, “You must”, “Do it this way, and “Well…”.

Cancer care is loaded with victims, rescuers and persecutors all vying for top billing: Who can be the biggest victim. We even say “cancer victim”. (Stop saying that.) It’s so easy to say, “take care of yourself first”--but in real life, and real caregiving, theory is honored in the breach. 

Maybe the Karpman Triangle can be taught to caregivers. Maybe we can give out little triangle pins as a reminder. 

Maybe I need a little triangle tattooed right on my hand. 

Free Flights for Cancer Patients

Here is information to share with your family and friends in CancerLand. Tell them about the Corporate Angel Network which arranges free flights to treatment for cancer patients using empty seats on corporate jets.

Note: the flights are to get patients (and guardians if the patient is young) to treatment--not for visiting or "wish" kinds of trips. But you know, if you have elected to go to a new city for diagnosis or treatment--that's another great big cost--and a big hit to a family budget.

Corporate Angel Network is a nonprofit--its supporters are corporations that make empty seats available. There is a database of available seats and patient families can request dates, cities etc as needed. Wonderful volunteers run the match-making part of the program.

I'm placing a link below so you can read more, and please forward this post to folks you love in CancerLand.

http://www.corpangelnetwork.org

Money in CancerLand

Yes—Money and Cancer: two great taboos that we encounter in CancerLand. 

Many of us know the feeling when we experience people turning away from us or being insensitive because they don’t know how to talk about or ask about our cancer or our loved one’s cancer.

But money is the place where most of us turn away. It’s a different kind of uncomfortable. We are reluctant to ask about prices, costs, expenses and who is willing to ask, “Can we afford this?” when the conversation is about the cancer care of a loved one? 

Our culture sets certain taboos on talking about money in general, and then mix in a crisis, a hint of death, some judgments about family issues, illiteracy around savings, spending…and you have a great big silence.

One frequent blind spot is assuming that if you have health insurance you are all set. But, and you know this if you have cancer: seeing a doctor several times a month can mean a great big bill of co-pays. You can be in debt even before chemo begins. And, what people with cancer know that those who haven’t been there is that chemo is expensive stuff. Even with so-called, “good” health insurance that’s a lot more and bigger copays every week. It adds up fast.

That silence around money and the cost of cancer care can hurt everyone: the patient, the caregivers, the kids and extended family and friends as well. Money talk is just plain fraught. But it’s crucial. And there is help –both financial help and help in how to talk about it.

CURE Magazine has published a special report called “Paying for Cancer Care.” It’s a tremendous resource and it’s free as are most of the resources they provide in the print and online publication. 

Here are some of the articles in the publication:

Financial Fix: A cancer diagnosis could break the bank, but it doesn’t have to.

Risky Business: Concerns about insurance should be addressed early.

Debt Crisis: Coping with cancer’s financial aftermath calls for creative solutions.

Money Madness: Worry about the cost of care takes an emotional toll.

That’s just a start to what is available in the special report, “Paying for Cancer Care.” 

You can see the publication and all the links online at www.curetoday.com

You should also not be shy or reluctant to talk to the financial folks at your cancer center. They have some euphemistic titles like “Financial Resource Staff” or “Financial Planner” but just come right out and ask, “Who do I talk to about how much all of this costs and how I make a plan to handle the financial side of things?” 

Don’t let money worries or thinking that that help is for other people stop you. The financial hit is one more bad side effect of cancer. But not getting the guidance will just make it a scarier family issue and it might even make you feel distant from friends. 

Don't Go to the Doctor Alone

You have heard the advice but maybe, like me, you thought, “Well really, I already know what they are going to say.” Or, “I’m such a private person I don’t want someone there for such an intimate conversation.  Or maybe you are the caregiver or the patient’s good friend and you thought, ‘Well, I don’t want to intrude”, or “Isn’t her son or daughter the best person to be there?”

But this week I got a big reminder of why we want someone with us at the doctor for any big news in CancerLand. Maybe it’s the start of he process—the diagnosis meeting or the one where they will lay out the treatment plan. OR maybe later in the process and it’s time for an update. I beg you: Take someone with you. OR offer to accompany your friend.

On Tuesday I went with my friend to what we knew would be an important appointment. There had been difficulties and then a lot of tests. Something was up. Now to get the news.  She has a daughter and a son and while they will need to be in future meetings, she was going to hear news that would upset them as well.

Here’s why it’s important to have an advocate with you. My friend is very smart, super competent, manages a pretty complex life on her own, but as soon as she heard the word “cancer” from the doctor it was as if her hearing and processing decreased by at least 70 %. That’s what happens. And it wasn’t completely new news. We both knew it was going to be some kind of cancer. We had talked about it ahead of time. She had made a list of things to ask, and options, family info etc. She was very smart about the whole process. But then, sitting next to her, I could feel her mental processing drain away. But because I was there, and I had her list I was able to say, “Now Anna would like to ask you this…and this…and

wondered about that.”

And I was her scribe. I wrote it all down: the doc’s answers and the instructions he gave—the next appointments and the order in which to schedule them and when to come back and which lab for the blood work.

If you were in the room you would have thought she was getting all of it. Anna is super poised and well-spoken. And she didn’t cry or shrink. But by the time we walked to the checkout area, all of the details were gone from her head—but I had written them down—for the scheduler and for Anna and her family later.

So if you are the patient—take a friend or advocate, and if you are a good friend, insist on going along to take notes—be the research assistant or CancerLand amanuensis. It’s a fabulous service and much better than making lasagna.

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. 

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 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.

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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!

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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!