Wednesday, September 30, 2015

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.

Monday, September 21, 2015

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:

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

Monday, September 14, 2015

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.

Friday, September 11, 2015

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.

Tuesday, September 8, 2015

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

Wednesday, September 2, 2015

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

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.”

Thursday, August 27, 2015

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: