Sunday, December 27, 2015

Move a Muscle Change a Thought

What happens to our bodies and our brains when we are caregivers?

We know a lot about the brain and addiction and stress. We know that caregivers are at high risk of misusing drugs and alcohol abuse and eating problems. The attitudes of people around us are not always the helpful. “Well, she deserves a glass of wine” or “Sure he smokes some dope but really—all that stress—he has to relax.” Or, “Yes she’s gained a lot of weight but taking care of her partner is really hard.” 

But what are we missing? How can we manage that stress and even the trauma of
caregiving?

A few weeks ago I attended a workshop with Bessel van der Kolk—who is the Director of The Trauma Center in Boston and considered by many to be the world’s top expert on trauma. He talked a lot about what happens to soldiers and veterans, of course, and what happens to people that experience terrible sexual traumas or who are in horrific accidents. Those are the folks who come to him for help.

But he also talked about the relationship between trauma and stress and addiction. He talked about what happens to doctors and nurses and caregivers. We’ve known about that intuitively, of course. Most professionals recommend support groups where we are encouraged to process our stress with lots of talking and sharing. But van der Kolk explained that talking can only help to a degree; we need to change the body first or words won’t work. “Calm the body to calm the brain,” he says.

That helped me to understand why I can’t always talk myself out of my feelings, and why it’s frustrating when someone says, “You don’t need to feel that way” when we are mad or sad or scared. We can’t get at our thoughts with other thoughts—we need to go through the body.

What trauma experts like Bessel van der Kolk recommend are breathing exercises, yoga, walking, stretching, dancing (not any formal kind of dance but rather moving around to some music)—movement. Now it’s been documented: Changing the body can change the brain.

Tuesday, December 22, 2015

Greatest Hits from Love in the Time of Cancer: The Amy Winehouse House

In the first few weeks after John’s diagnosis we visited a local cancer support center to see what services might be available. The house was lovely and there are many activities, support groups, yoga, dance, and shared meals.

But about 30 minutes into the orientation I picked up the whiff of condescension that often accrues around cancer. Part of it is in the pastel and pretty decor but it’s also apparent in the tone of voice used by the staff. It’s kind of a cross between the voice you might use when talking to a very small child and the voice one uses talking to someone in the midst of a psychotic break.

The condescension is also revealed in the two-handed handshake: the staff member takes both of your hands in theirs. This is accompanied by a long, deep gaze, which immediately feels like someone has drilled the staff on how important it is to make eye contact and that “people with cancer need to be seen.” Well, they are going to stare you down and make 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. At the “club house” the counselor told me--with that kindergarten teacher lilt in her voice, “We get together on Thursdays and make cookies.” Cookies?

I told John on the way home, “I have never made cookies as a heath care option so why would I make cookies in an institutional kitchen with a group of strangers just because you have cancer?” (OK, to be fair, I was still absorbing the reality of his diagnosis and having some flashback to my own cancer days.)

But that invitation to make cookies was the turning point for me, it shifted me from scared to angry and I was then energized. It set me to thinking about the kind of cancer support
place I’d like to create.  So here is an introduction to my new cancer support organization: The Amy Winehouse House:

The mission of The Amy Winehouse House is: Fuck Cancer, and it goes like this:

At The Amy Winehouse House 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 a jackass before you got cancer now you are a jackass with cancer.

We will not ask you to share, process, make crafts or cookies or drink smoothies. We offer no bookmarks or anything that has, or requires, a crocheted cover. 

All activities at the Amy Winehouse House are optional and include:
Making martinis
Strip poker night
Learning how to hot wire a car
Our book group is currently a collection of Chuck Palahniuk

Yes, we have a smoking room --(If you have cancer and are going to die we want you to enjoy a cigarette on us.) On Saturday nights we have strippers. Yeah, for girls too.

And we certainly do have drug education.  We think of this 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 some 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.) 

In future entries I’ll explain the Board of Directors and our policy for volunteers. (We don’t have tee shirts but you do have to wear eyeliner.) We’ll also talk about why we hated Lance Armstrong all along, (We call him “One Ball” around the House.) And yes, we have bracelets too, but ours say, “Fuck Cancer.”

Saturday, December 12, 2015

More on Marriage

I’m still thinking about marriage, and loving what I learn from reading. Sometimes the best learning comes from reading about relationships that don’t work, until they do.
I loved Elizabeth Gilbert’s book, “Eat. Pray. Love” I read it and I listened to it: God and pleasure and faith and fear and how she learned to overcome fear.
Yes, OK, it did help that she had a big house to sell and a huge book advance. But none of that discounts her humor and good grace of her book. I especially loved when she asked –by name-- everyone in the universe co-sign her prayer to have her divorce end peaceably. And I also loved that water tower scene in India, finally, finally turning that ex over to God—


But her book that followed “Eat, Pray, Love” is Gilbert’s second memoir, and the rest of the story,  “Committed” about marriage and how she reluctantly married the man she fell in love with at the end of “Eat, Pray, Love.” One of my favorite lines from Committed is this:
“There is good reason to end such stories with weddings, and buoyant celebrations of love. Because what follows a wedding is a marriage. And marriage is an institution, not a party.”
A great line. Quite borrowable for toasts, I think.
What Gilbert also says is, “Marriage is hard when you invest all of your expectations for happiness in one other person. A man can be part of a good life, but not the life.”
Now that’s a tattoo or a poster or a mantra for young women and all women.
So how do you get that great marriage from the reality of “Marriage is hard”? By investing in all parts of your life and in many relationships. You have to make (intentionally create) your own good and full life, and then a man/partner can be a great accessory.
Indeed.

*****
I write lots about relationships and marriage in my book, “Out of the Woods”—available at bookstores and, of course, on Amazon.http://www.amazon.com/Out-Woods-Womans-Long-Term-Recovery/dp/1937612473

Sunday, December 6, 2015

Marriage Reveals Us


A lesson from fiction this week.

I just re-read the great novel “Olive Kitteridge” by Elizabeth Strout. It’s a story about the human heart and hope and love and pain. It’s a book that opens one’s veins I think.

In an interview with the author, Strout says, “A marriage is always a source of great drama for a fiction writer. It is in our most intimate relationships that we are truly revealed; that is why I write about married relationships.”

“We are revealed”, she says. And I am nodding. That is why I like being married. When John and I were first together, and his cancer was newly diagnosed, friends said to me, “You don’t have to marry him.” Some others said, “He has cancer; you don’t have to take that on.” What they meant was, “You don’t have to be a martyr.” But what they didn’t understand is that I am not a martyr –not a bit. Actually I’m quite selfish, and that’s partly why I like marriage. 

Stout nails it: “We are revealed,” she says. Being married is actually selfish, and being a cancer caregiver may even have a hint of selfish in it. They are both very powerful and intense ways of seeing oneself.

Yes, you could take the long, expensive route by going to psychoanalysis or try a cheap, fast route of a self-help weekend to learn about yourself, but marriage works.
Even when it doesn’t.  

Saturday, November 28, 2015

Cancer Movies: 50/50

Maybe like me, you have put off watching the 2011 comedy/drama called 50/50. I didn’t watch it for years because I thought it was either a sappy, tearjerker about cancer, or a gross, expletive-filled, Seth Rogen 20-something boy story. I didn’t know, and I didn’t realize, that it could be both.


We watched it last night and we laughed and cried. Yeah, John too. I am glad that I didn’t see this at the movies with friends though. Not because the cancer scenes cut so close to home but because there is one boy-to-boy discussion of their girl friends and certain sex acts that made me blush. If I saw this movie on a first date I’d leave the theater in sunglasses and go right home. (alone.)

But, we’re not dating, we’re married and we’ve done that sex act so I am laughing as as I type this, Ok it’s that funny.

And yes, Seth Rogen is mostly a pig but, a pig with a heart for friendship, good writing and insight into how guys talk and fight and love each other. Yeah, the movie is a love story and –spoiler alert—the love object is not Anna Kendrick. 

I would put 50/50 in my top three cancer movies. Check it out. But please, not on a first date. (And dear God, not with your in-laws.)

Saturday, November 21, 2015

Making Love Once a Week Makes a Lot of Happiness

Here is an interesting bit of research on marital happiness and frequency of sex. Over the years you too have probably read articles that suggested that the more sex a couple has the happier their marriage will be. Well, maybe not.

Turns out that have sex once a week, regularly, weekly, can keep the bonds of matrimony grinning and intact. The Society for Personality and Social Psychology now confirms that marital happiness associated with having sex just once a week is just enough sex.

And it turns out that that sexy happiness is quite valuable: Investigators discovered there is a larger difference in happiness between people who had sex once a month compared to those making love once a week than there is between people with incomes in the $15,poo to $25,000 range and those in the $50,00 to $75,000 range.

So money won't make you any happier but making love will.

And in CancerLand we love having a weekly, loving goal. :)

Here is the full article:
http://psychcentral.com/news/2015/11/19/once-a-week-sex-may-be-optimal-for-content-couple/95065.html

Wednesday, November 18, 2015

You Gotta Laugh

At times like these--the combination of terrorism and chemotherapy--you just gotta laugh. And you do love the people who can bring humor to the oncology center or who can make a tsunami of lasagna seem funny.

I do challenge someone in CancerLand to write a humor handbook for patients and caregivers. (We know the professionals have their own dark humor-- don't worry, it's understood and professionally appropriate.) But still, don't you wish you had a joke up your sleeve or a trick in your bag?

Now you can. I want to share this totally uncancer resource today so you can have a grin or maybe if you are the friend or caregiver you can give this to a friend in CancerLand.

"Great American Humor" by Gerd De Lay--is that little compendium of little jokes. Kind of simple puns and one-liners and the stuff that old time speakers might have used to warm up an audience. This book has 1,000 jokes, witty sayings, and one-liners.

Don't know what to bring or send? Here it is. Awkwardness prevented. The day saved. Take a look.

It will make you smile too.

Monday, November 2, 2015

Hard Blessings--Jewish Ways Through Illness

When, as patients, we hear our serious diagnosis, or when we are in the depths of a painful or scary treatment we need extra help. Caregivers too have their times of feeling, “I can’t keep doing this” or “I’m going to lose all of me while he/she is sick.” They need some extra help also. 

We know about diagnosis-specific support groups, and emotional support resources but we also need spiritual help. 

This week I read a beautiful book about spiritual support during illness in the Jewish faithHard Blessings—Jewish Ways Through Illness, by Susan Kaplow offers stories and practices from Judaism that can call us back to our faith during illness.
tradition. The book,

The book is beautiful is so many ways. It is consoling, reminding, encouraging and it is also a beautiful object to keep nearby. Susan Kaplow is writer, collector and she is a visual artist. The stories by Susan and other contributors are illustrated by Susan’s artwork.

This book can also be a help and a guide for people who are not Jewish. This book offers us a powerful example of how we can each integrate our spiritual beliefs into our healing and how we live with our illness or caregiving.

The place of hard blessing touches all of us, and we can all find inspiration in this beautiful book.

*****
Here is a link to the website for Hard Blessings-Jewish Ways Through Illness:

Monday, October 26, 2015

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. 

Wednesday, October 14, 2015

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

Thursday, October 8, 2015

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. 

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
Website AmyHalloran.net 


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
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.”

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: