Fight Cancer or Cure It?

As in every other field, and every other endeavor, language matters. Words have power.
The rhetoric around cancer can encourage or defeat, and it can persuade and raise money or it can dash hopes.

Last week a provocative op-ed in the New York Times, titled: "We Won't Cure Cancer" provoked a lot of discussion, some anguish, and a tiny bit of relief. The writer, Jarle Breivik, is a professor of medicine at the University of Oslo in Norway.

Maybe, like me, when you see those words: "we won't cure cancer" you think, "OK, so what are we going to do about it?" And helpfully, Brevik, tells us that we are getting better with cancer and better at treating cancer, and lifespans have extended, but he explains, one of our complications is that we live longer, and cancer does correlate to aging, so the longer we live the better our chances of, yes, dying of cancer.

But the centerpiece to his provocatively titled article is that we have to get better at thinking about what "cure" means, and how to read the research proposals and which promises to cling to.

It's a conversation that matters.

So here is the link to the article in the New York Times. Read and share and yes, keep thinking:

http://nyti.ms/25lMOGo

Hidden Caregivers--Children Caring for Adults

It's so much more than, "Mommy's Little Helper." In the United States there are tens of thousands of children who are the primary caregiver for a parent or grandparent. These very young caregivers--ages 6 to 16--do more than bring a glass of water--these are children doing primary physical care for an adult. That means bathing, mobility support, feeding and medication delivery and management.

And they need help. But here's the rub: children is positions of medical/physical care can be at risk of a CPS (Child Protective Services) call which would disrupt the family. So what is a teacher, neighbor or clergy member to do?

Find safe ways to get additional help for the family---and look at this fabulous model in Florida's Palm Beach County.

Here's a link to a great article this week by Jane Brody in the New York Times.

Please do share this one with educators, social workers, faith communities. All of us who know the realities of caregiving--and being cared for--can help out.

Here is the link:
http://nyti.ms/25bgUwl

The New Anatomy of Cancer--Best New Reading on Cancer Studies

In case you missed it in your reading pile yesterday (Sunday May 15)--the New York Times Magazine published a special report on cancer: some of the new science, research, prognosis estimates, and a wonderful piece by my favorite cancer writer: Siddhartha Mukhergee.

I''m posting the link below to Mukhergee's article called, "Doctors Without Borders" about how treatments are becoming more targeted and more personal. You recall his fabulous book about cancer is, "The Emperor of All Maladies."

This special New York Times Magazine issue is filled with articles about new cancer research, new ideas about cancer's science (the science of cancer is changing) and some powerful caregiver stories too. If you have a hard copy save it for future reference or ask a friend who reads the Times weekly to save this for you.

Great reading. And reading about cancer does matter and does help. It is our cognitive life raft.

Here's the link:
http://nyti.ms/1rZJAd4

I Can See Clearly Now

“Our deepest wounds are the lens through which we see the world.”—from my journal May 1994

I sing along with the radio: “I can see clearly now, the pain is gone. I can see all obstacles in my way. All of the dark clouds have passed me by. I can see bright, bright sunshiny day.”

That is a song that brings tears to my eyes. It’s a song about recovery and healing. And it’s

been a long journey through so many kinds of healing for me. And so I am aware of how my own worries and wounds distort how I see John’s cancer and how I worry in this relationship.

Many people are afraid of cancer and many caregivers have the ongoing fear that their loved one will get sick, sicker, or die. This is not about turning a molehill into a mountain. This is not about turning a stomachache into cancer. But it is about cancer being really scary and threatening. 

But still, but even with that, how much do I lose my --and our --good life to my worries. At what point does reasonable fear become a greased slide into a truly old belief that I will be abandoned? How much do I assume that the worst things will happen because I am not enough?  How often do I set myself aside and wait for pain and grief to descend --and when they don’t I go and shake the fear tree to bring some fears so that I can have the familiar terror? Even on a good day that takes some sorting out.

This is about woundedness and beliefs. I am a woman of faith and I believe in a Higher Power but these other beliefs are something else. It’s a kind of dark belief in a lower power, and maybe this is a kind of blasphemy—but some days I wonder if I have created Gods of Woundedness that I worship and solicit even more than my God of love. Oh lord, I am so ready to relinquish that deity now. I’m ready to see clearly now and keep singing along.

The Literature of Caregiving: Me Before You

Me Before You by Jojo Moyes. Sound familiar? Yes, you’ve seen it on the bestseller list in the New York Times and your local paper. You’ll see (mostly women) reading it on the bus and subway, and at the movies you have seen the poster for the movie version coming this summer. Yes, it’s a chick flick and a romance novel, but what you may not know is…

“Me Before You” is a caregiver story. And while being a romance and yes, teary at times, it is a complex and powerful caregiver story. This novel shows the complicated layering of both family and professional caregiving.

A young woman takes a job out of necessity and becomes a professional companion to a relatively young man with quadriplegia. He is cared for in his parent’s family home and there is paid medical care, PT and other services. So we see a full surround of professional caregivers and how they interact with each other and with the family.

But despite comfortable means, and lots of help, caregiving is still a challenge because of the pain of illness and disability, and because of the human heart. Moyes shows us two people helping each other, and how hard it is to love fully and selflessly.

While readers will be caught up—and I was—in the engaging love story, we are also allowed to observe the very daily and hard, specific details of physical and emotional care demanded of the caregivers. 

This story will land in front of you soon—as book, CD or movie. Here is another full cast of caregivers making imperfect lives while loving and growing. This is the perfect book to introduce the “what if’s” of caregiving and long-term care planning to your family, friends or book club.

***

The Literature of Caregiving is a monthly series at Love in the Time of Cancer. The first installment is December 8 2014--with "Home" by Marilyn Robinson.

April is Poetry Month, and so...

“Let us remember…that in the end we go to poetry for one reason, so that we might more fully inhabit our lives and the world in which we live them, and that if we more fully inhabit these things, we might be less apt to destroy both.”

             --Christian Wiman

For this April Poetry Month I’m sharing one of my favorite poems for the Love in the Time of Cancer community:

 “What the Living Do” by Marie Howe:

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

***

This week I am heading to Massachusetts for Yoga Teacher Training. I'll be back home, and back here at LITTOC,  on May 1st.  Thank you always for reading this blog and inspiring me with your stories. 

When We are Well Enough to Get Cancer

"In the United States the median age at which colon cancer strikes is 69 for men and 73 for women. In Chad the average life expectancy at birthis about 50. Children who survive childbirth — and then malnutritionand diarrhea — are likely to die of pneumonia, tuberculosis, influenza,malaria, AIDS or even traffic accidents long before their cells accumulate the mutations that cause colon cancer.

In fact, cancers of any kind don’t make the top 15 causes of death in Chad — or in Somalia, the Central African Republic and other places where the average life span peaks in the low to mid-50s. Many people do die from cancer, and their numbers are multiplied by rapidly growing populations and a lack of medical care. But first come all those other threats."

Those two paragraphs are from a December article in the New York Times outlining the incidence of cancer in the developing world (deeper poverty) versus our Western communities. It suggests a mixed blazing for sure and an intriguing paradox for people with cancer:

 We lived long enough-- and well enough-- to get cancer. 

Reading the entire article is worth your time because in addition to showing what the greater health concerns are "there" versus "here" it also shows the terrible dilemma of what happens to cancer as countries are lifted out of deep poverty. As cancer arrives as the incidence of deadly infectious diseases recedes. 

The article is sobering and surprising--and a challenge to people with cancer and to those in philanthropy and international healthcare.

Here's a link to the whole article. Do take a look:

Here is the link to the New York times article by George Johnson

http://nyti.ms/1md99nY

Guest Writer--Amy Halloran--Troy, New York

This week guest blogger Amy Halloran from Troy, New York….expert on grains, breads, baking and making pancakes. In today's essay Amy shares what she's learning about relationships:

For a long time I thought that asking was the most important part of getting what I need. If I could identify and articulate what was wrong or what I lacked, then someone would fill in my blanks. If I told my husband that I needed more affection, or help keeping the kitchen clean, I assumed he would work toward fulfilling my request. 

This thinking extended to all my relationships. I need to see you more, I told my sister, and she didn't argue. She agreed. But neither of us made a dedicated plan to make that happen. So we still didn’t, and don't, see each other enough.

I stated my needs and thought my problems were solved. That’s not how things work. Well, maybe they would if I were a queen, and had a royal court to do my bidding. But here in the real world, relationships are dynamic, and require give and take, two parties discussing their ideas and feelings and trying to learn how to dance to a song that you’re writing together. This is awkward and none of us are skilled at the steps, or know the tune. Not even if we’re very familiar to each other. 

 My sister and I grew up in the same family, and my husband and I shared a vision for a life together that was so strong we pursued it like a mountain we had to climb. Given the circumstances, I should be able to communicate easily and well with these two people, and yet I am learning, always learning how to be and work together with them. As much as we share, we are very distinct. Crossing the gulf between two people, any two people, is tough. Why did I think it would be easy?

One reason perhaps is linked to shopping. Consumer culture leads us to believe that we can make a list, and the store of the world will have the goods in stock. But only so many of our problems can be answered with a dollar. 

Relationships are not transactional. While I thought I was problem solving, all I was doing was making a shopping list. 

I think it’s important to note how consumer culture shapes us, regardless of family values. I grew up in a family that was not materialistic. Forcefully so. Once, I wrote a letter to my parents stating a series of inequities I observed. They didn’t treat us four kids the same – I liked math and was good, too good at measuring things, especially love. 

My dad took me out for the day to show that I mattered big to him.  We drove around, and visited my grandfather; help him with some things around his house. Did some other errands. One of our stops was a flea market, and I thought my father would buy me the easy bake oven that I craved. But our expedition was about time together, not things.  

I was a heavy user of the real oven and had been for a long time, so my dad didn’t want to get me the pink plastic thing which would require a steady stream of silly boxes of cakes. He also was demonstrating that love was not stuff. The lesson didn’t quite take. But I understood what he was doing.

My parents’ examples couldn’t fight the impression I got from our environment, a realm that got even more of a consumer bent over the last 30 years. In America we can shop our way to better health, better spiritual lives, and of course better outfits.  All of this helped me function on a premise that I could make lists for my loved ones, as if I were shopping, and we needed more cinnamon or butter in the metaphoric house of our intersections. Then, I assumed they would give me the stuff that I wanted. This seemed reasonable, right? We were out of a supply, I noticed, so fetch it, please.

Yet was I ready to be the emotional store for the people I love as they ask for what they need? That's another series of thoughts to ponder!

There is more to connecting with others than making lists. We can’t just identify our bruised feelings and find gaps that we think people should fill with help. We need to work with other people to get what we need. Identification is just one step in the process. Have I learned this yet? No. But writing this essay is another attempt to teach myself a lesson. #

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

Let Go and Grow

Beautiful Swimmers by William Warner is one of my very favorite books. It is the story of the watermen who live and work on the Eastern Shore of Maryland, and it is also the story

of their counterpart, the blue crab.

It’s all there in Beautiful Swimmers: how the crab lives, feeds, courts, mates, dies and yes, is eaten. And Warner shows us how the waterman trains, dresses, plans, thinks, prays, eats, and yes, dies. These two --the crabs and the watermen-- are wonderfully and positively co-dependent.  

I learned two of my favorite words in this beautiful book: First, autotomy is the remarkable crustacean attribute of dropping a limb, allowing a pincher or leg to fall away as a means of exiting a battle or a threatening situation.

Then, autogeny, which is the related, and accompanying attribute referring to a crab’s ability to grow a new limb to replace the one sacrificed for survival.

I could not, not the first time I read this, or now, years later, miss the comparison to humans. Wouldn’t it be wonderful to know when to drop something or someone and just walk away? And, yes to also be able to naturally grow that part of one’s self again, to make a choice, and to become new.

The Glorious Debris

“Every one of us

 is called upon, probably many

 times, to start a new life. 

A frightening diagnosis, a

marriage, a move, loss of a job…

And onward full tilt we go,

pitched and wrecked and absurdly

resolute, driven in spite of 

everything to make good on a 

new shore. To be hopeful, to

embrace one possibility after

another—that surely is the basic

instinct…..Crying out: High tide!

Time to move out into the

glorious debris. Time to take 

this life for what it is.”

          --Barbara Kingsolver, from High Tide in Tucson

Is Your Cancer Luck or Legacy?

You know how this goes. You tell someone you have received a cancer diagnosis and either directly or indirectly they start to probe: “Is there any other (your brand of) cancer in your family?”

We know that is often a self-comforting question: if there is cancer in your family, and you have this scary diagnosis, then maybe they can (falsely) feel a tad safer. That is, while insensitive, sort of understandable.

But it’s a different matter when your oncologist is asking the same question. Because they know some stuff that you don’t. You might bee thinking, “Hey, my granddad had colon cancer so this breast lump surely can’t be a big deal. Or the reverse, “Sure, we’ve had some melanoma scares over the years so I don’t have to worry about lung cancer.”

Or—and this is hardest—you have cancer so you think (in a magical thinking kind of way) “At least this means my kids won’t get cancer.” As if you are taking one for the team.

Or maybe you shove all of those thoughts far away and you don’t talk or think about cancer in your family tree.

But you might want to. 

A new book by Theodora Ross, M.D., Ph.D. called, A Cancer in the Family will help you learn about your genetic inheritance, and the ways that cancer moves through families. 

Ross’s very smart and very readable book gives facts and figures, yes, but it also gives you language with which to think about cancer’s patterns, causes, systems and statistics, and the when and what of genetic testing.

The foreword to “A Cancer in the Family” was written by the best cancer writer ever: Siddhartha Mukherjee, M.D., Ph.D., author of The Emperor of All Maladies. Of Ross’s book Mukherjee writes: 

“Confronting a family history of cancer and thinking about the nuts and bolts of genetics can feel overwhelming. Ultimately, though, the knowledge you gain from this book is empowering. It can save your life, and he lives of the people you love most.”

The Undiscovered Country of Illness

Francine Prose calls this sentence of 181 words, written by Virginia Woolf: “one of the most complex and virtuosic sentences in all of literature:

 "Considering how common illness is, how tremendous the spiritual change that it brings, how astonishing, when the lights of health go down, the undiscovered countries that are

then disclosed, what wastes and deserts of the soul a slight attack of influenza brings to view, what precipices and lawns sprinkled with bright flowers a little rise in temperature reveals, what ancient and obdurate oaks are uprooted in us by the act of sickness, how we go down into the pit of death and feel the waters of annihilation close above our heads and wake thinking to find ourselves in the presence of angels and the harpers when we have a tooth out and come to the surface in the dentist’s arm-chair and confuse his “Rinse the mouth-rinse the mouth” with the greeting of the Deity stooping from the floor of Heaven to welcome us—when we think of this, as we are so frequently forced to think of it, it becomes strange indeed that illness has not taken its place with love and battle and jealousy among the prime themes of literature.

--from Virginia Woolf in "On Being Ill”

Spring Will Come

Today we did a three-mile walk with hills. We were huffing and puffing but moving at a pretty good pace. As we made the turn to come back home I said to John, “Do you remember that summer after your first surgery; you could not walk from our front door to the car.” And he remembered.

It’s a shock still, how that cutting into flesh and being sewn back together took away so much strength so fast. He looked the same but could not walk at all.

Now we hike and do hills and we push each other on.

That summer of chemo changed so many things. No movies, no malls, no grocery stores. Even a tiny bit of air-conditioned air caused excruciating pain and frozen breath. He couldn’t even look in the refrigerator so I had to learn to cook. That was one of the gifts of Cancer Land—I became a cook. But that summer when it all began was so shocking and crazy. 

I think about this today as we hike and run and dress for a dinner out. So many things changed. We grew from them and with them. I know that isn’t everyone’s path. Cancer can end a relationship as well. It can be too much. And no one gets blamed for that. It can just be too dam hard sometimes. So what I feel tonight is gratitude and grace.

The Literature of Caregiving: Tom Lubbock & Marion Coutts

It is not often that we have both patient and caregiver as extraordinary writers. And while

often sad and hard stories we learn so much by being able to see both sides of a cancer story. Even a story unto death.

This month I read a pair of memoirs that give us this perspective and some new language and eyes into a cancer patient and cancer caregiver with books by Tom Lubbock who was Chief Art Critic for London’s Independent newspaper. Tom was diagnosed with brain cancer in 2008 and died in 2011. His book, the chronicle of those three years until days before he died, is “Until Further Notice, I am Alive.”

His wife, the artist and writer, Marion Coutts, wrote her book, “The Iceberg” through and after that same time period. Hers is the parallel story of the diagnosis, surgeries, hospitalizations and, for both of them, the heartbreaking complication of raising their baby son, Eugene.

What many of us who love words, reading, books, arguing our point is the injustice and indignity of Tom’s particular cancer which was situated in the language center of his brain. The wonder and strange thrill of his book is reading him as he articulates what language means and what it means when a writer is losing language. You would think: morbid. But no.

These books are each slim and carefully crafted. These two are such fine writers so I encourage you to buy and read both, side by side. See how each one describes the same day. What does it look like to him? To her? How they see the world includes what they see, even how they see death.

From Marion: “A palliative nurse came to see us at home in the autumn of 2010. She said,

‘On a scale of one to seven, how would you rate your quality of life?’ There was a long pause while we digested this madness. Tom, slightly absent, lightly bored, said thoughtfully, ‘That’s a ridiculous question. Obviously we go—“Oh God” all the time, at all the stuff to be done. But generally it is wonderful. We are interested.”

From Tom: “Mortal. We occupy a limited patch of space for a limited patch of time. Like the art of realistic paintings: pictures hold an equivalent in the confined areas which they enframe, and the brief narratives they represent…We know the deal. We’re bodies. We are not in our own hands."

Marion’s life continues. Tom’s life does not. But these books do. And what they “enframe” for us is wisdom, self-compassion and love.

What We Don't Talk about When We Talk about Aging

Those of us who work in caregiving or aging services or healthcare do a lot of talking. We talk about medication and money and housing and hospitals; we talk about caregiving and caregivers and schedules and finances. But the thing we don’t talk about enough is talking.

We rarely talk about how critical talking is in tackling the issue of aging with dignity. Of course we say the words; we say that seniors or people with chronic illnesses must talk to their families, and we offer brochures that tell people what to tell their kids and what

children should ask parents. We remind caregivers to speak up and ask for what they need.  But then we quickly move on to other topics because, we too, are uncomfortable with talking.

Many of us have suggested that families use holiday gatherings to start the conversations about things like living wills and how they want to live later.  But we forget to mention how many times you have to try to have that conversation before it “takes.”

Talking is where those of us who work with an aging or ill population fail. Despite the many fall prevention workshops, we who work in aging are falling down on the job because we are just not talking enough about talking.

What I am talking about is talking about feelings---messy and uncomfortable feelings. The realm of emotions is gray and most of us prefer black and white. We’d rather talk about aging protocols and best practices and we can get very worked up about Medicaid and nursing homes, but we regularly avoid the one thing that will make the biggest difference in the dignity of someone’s life: Talking and listening and then talking some more.

“Aging in Place” is the buzzword. At a recent workshop I listened to a panel discuss the services available, the options for money and housing and caregiving help. But the sad truth is that none of those strategies are viable unless spouses and parents and children are talking about this hard stuff frankly, directly, and repeatedly.

The bottom-line of aging in place is this: You must talk to the point—and well past the point—of being rude, boring and annoying. And that is not easy for a family member to do unless staff and coaches and navigators back them every step-- and every word-- of the way. 

Denial, as they say in Twelve-step recovery, is not a river in Egypt. It is the central issue in illness and aging. We’re Americans; denial about aging and death is built into us. We need to be frank about this: The only healthcare fact you need to know and that all research confirms is this: You will age; you will then become less able and then you will die.  Given that, who do you need to talk to?

These conversations are not easy or comfortable, but if you want to have a say on the last years of your life then start talking about that now. There is no time for family planning in the middle of a crisis. 

Here is what I learned from years of being a family care giver: You think you’ll get some kind of warning; you think aging will happen gradually kind of like the way your hair goes gray, a little at a time.

But no. It’s very fast. One phone call, one bit of blood, one screech of the tires, one slow motion slide as your foot goes the wrong way on a scatter rug. Your life-- and the life of every family member around you-- is rapidly and drastically rearranged. Yep, you meant to talk about healthcare proxies and end of life measures and where you would like to live if you ever got disabled. But…

  

The family chat must happen long before you meet your discharge planner—and since we don’t know when that is going to be: You have to talk now. Discharge planners are amazing professionals. Their job is hard logistically and emotionally, but they can’t facilitate the conversations that we should all be having now with our family and our friends.   

Those of us who work in healthcare and human services are at fault too. We keep talking about making houses aging-friendly and “patient navigation”. But no one will ever get the benefit of those if they don’t first talk and talk and talk to their family. 

Shame on us for not insisting that every person with a serious diagnosis have those talks.  Anyone who works in healthcare and human services should be saying, “Did you talk to your kids?” when they get a call from a senior, and “Have you sat down with your parents?” every time we get a call from an adult child asking about services. And we should not accept excuses like, “I can’t talk to my parents about their money.” Yes, you can or you’ll be talking about it with a complete stranger in the cramped office of the nursing home you didn’t pick, and don’t like. 

One more big thing we need to say is, “Never say never.” At some point a family member will be your caregiver.  Start talking now about who that might be and how you can make this work best for them. If you are lucky and you plan ahead you can have a say in this, otherwise no. Don’t waste time joking or disagreeing. Who will it be? 

If you had to choose which of your children you’d prefer to live with be sure to talk about that now while everyone is calm and has time to think about it and then come back and talk some more. Married children need to talk to their spouses and their kids and even their in-laws.  It can take several conversations to get through all those layers.  If there are siblings there will be sibling issues. They don’t go away because we get older. And even the best families have to tread this tricky terrain.

At the end of the day—or the end of your life --the issue is not nursing homes or retirement communities—but what you didn’t talk about. And that is where dignity will live or die.

It’s not the ramps and rails that will derail a family; it is the emotional issues we would-- literally --rather die than talk about.

Now Let's Talk About Work---and Cancer

Yes, we talk a lot about cancer and love, cancer and marriage on this blog. But what about cancer and work? It was Freud who said that man's two great concerns are love and work--so too in CancerLand.

Did you know that 44% of people with new cancer diagnoses last year were folks of working age?
Did you know that 20% of people with cancer report work limitations affected by cancer-related issues?
Did you know that almost 1,000 people made EEOC claims based on cancer discrimination?

And I bet you did wonder--at least one--if you were being treated differently at work because of your cancer.

There are many ways that cancer affects us at work: We use up our sick time, we lose productivity when we don't feel well, we need a lot more schedule flexibility for chemo, radiation and just so many more doctor's appointments. We also have to say "No" to overnight assignments or conference travel or promotion to positions that involve longer hours and multi-city assignments. So do you share? not share? lie sometimes? Much discernment is required.

A great resource is the national nonprofit organization: "CancerandCareers". They are a group of both professionals and volunteers who can answer every cancer and work related question: financial issues, EEOC, FMLA, and how to talk to the Human Resources Department, the Finance Office, and your boss. They also have great advice on how to interview for a new job--in your current company or at a different organization.

I'm putting the link right here. Do share this one with your friends, and any coworkers with cancer and maybe even with your HR Department if you want them to get much better at helping colleagues in CancerLand. Here is the link:
http://www.cancerandcareers.org/en

What Does Love Look Like in CancerLand?

Most of us have a sense of where boundaries are in a good relationship. It’s always imperfect, but we have the idea of balancing dependence and autonomy. Our boundaries are permeable and we can go away and come back, and we can give our partner both space and attention as needed.

But then cancer arrives and we get muddled. Our boundaries—and our relationships --go to hell. Sometimes we are praised as good caregivers even as we are sacrificing the autonomy that made the relationship great pre-cancer. What’s a wife/lover/girlfriend to do?

How do we keep a relationship strong when one half of it is very weak? How do we keep a

separate sense of identity even as our partner, medical professionals and maybe even our friends are celebrating (or nudging us toward) a dependent role as caregiver?

It is not easy. But I knew early on that I wanted more than John’s physical survival; I also wanted our sexy, happy, and intellectually stimulating marriage to survive. And that meant finding the line between caregiving and codependence.

Here is a quote that I have to read again and again. It’s a great reminder and antidote to the “teaching”, controlling, and all manner of codependency I am so tempted to tumble into. This is Scott Peck on genuine love: 

“A major characteristic of genuine love is that the distinction between oneself and the other is always maintained and preserved. The genuine lover always perceives the beloved as someone who has a totally separate identity. Moreover the genuine lover always respects and even encourages this separateness and the unique individuality of the beloved. Failure to perceive and respect this separateness is exceedingly common however and the cause of much suffering.”

--M. Scott Peck, MD

I do not want to be exceedingly common.

How Not to Say the Wrong Thing

Maybe you saw this fabulous article making the rounds on Facebook. OR maybe someone sent you the link or handed you the clipping. (In that later case read it twice because maybe there is a hidden message there for you.)

But I'm posting it here because it is simply smart and funny and true.

In CancerLand we know how it is to be on the receiving end of, "Dear God, did she really just say that?" kind of comments. But we also want to be careful that we are not the deliverer of such things either. And, given the stress and distortion of cancer, it's possible that out of love or pain or fear, we might say the screwiest things.

This fabulous article by Susan Silk and Barry Goldman  reminds friends and loved ones how to, as the title says, not say the wrong thing. But it goes to a place none have gone before--it adds this diagram to help you

determine whether you should say that thing you want to say to this person. Or maybe you can say it to some other person instead, or maybe just shut up and write in your journal or have a good cry.

The bottom line is: "Comfort IN. Dump OUT."

Here's the link to the article:
http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407

Take the time to click and read,  and do share this one like crazy.

Fight Fear with Self-care

“Self-care never leads us away from our highest good; it leads us toward it.” 

--Melody Beatty

This is a lesson I have to learn over and over. So I’m sharing Melody Beatty’s quote here for you and maybe to remind me too. 

When cancer’s fear hits my first reaction is Control and then, Get Busy. I understand the dynamic. Fear cannot hit a moving target. So when we get scared we get busy, and when we get busy we get more tired and more stressed. It makes sense and is understandable. But...

in CancerLand there is so much to be afraid of: words we can’t pronounce, side effects that come and go and which can sometimes be terrifying (He stops breathing when he opens the refrigerator door—not even the freezer—just the fridge!). And the lingo of the medical establishment and copays that go up and up and up. Then of course the medical reality: people die of cancer. We know that so even though we experience so many cancers as chronic illnesses now, some are still fast to the finish line.

And for caregivers there is also the secret fear with the more chronic cancers: “Will this be my/our life forever?” “Will quarterly blood tests rule my emotions all year?”

In this Land you will be tempted to do more, move faster, read more and that means less self-care (for both patient and caregiver)—and note: medical appointments are not self-care—they are just business –as-usual in CancerLand.

I know, fighting fear with self-care seems counter-intuitive but believe me, it works.

What’s not easy is learning what true self-care is for you. Start with the standard prescription: manicure, massage, lunch with friends, a new pretty blouse. But then dig deeper. Maybe for you self-care means getting away alone for an overnight. OR maybe it means a movie marathon with someone else who loves Downton Abbey or going for a long run or doing a 5K.

Or –and this is radical—try some volunteering. (But absolutely not cancer related activities) Instead volunteer to hang an art show at a school gallery or tutor young kids or plant bulbs in a city park. Find people who don’t know you as a cancer patient or cancer caregiver (and don’t tell them). Take time to experience yourself apart from cancer.

You will be tempted—very tempted—to say, “I can’t do that, I’m needed, things are not great right now…” But it is life—and living life –that is the best self-care and the best antidote to fear.

Happy Introvert Day

Today is January 2. The day that introverts get to breathe a sigh of relief.  We can come out of hiding; it’s safe to answer the phone and we can stop pretending we feel the flu coming on. Yes--the holidays are over. 

From mid-December through New Year’s Day, those of us with an introverted nature live in a state of perpetual dread. The weeks of office parties, neighborhood potlucks and open houses drain all our energy. But today we can relax; we made it through.

I speak from experience. I am an introvert. It surprises most people because I’m outgoing and friendly and very far from shy, but I prefer one person and one conversation at a time. 

I fought this for years, always trying to be someone else. I made myself go to parties; I

tried to fix what I thought was “wrong” with me. It didn’t help that other people would press, “But you’re so good with people” as if being introverted meant living on the dark side.

This is also one of the blessings of self-care. I no longer eat or drink in order to fit in or to numb the discomfort of social activities I don’t like. It’s a great relief. 

It’s no wonder that we introverts are sometimes defensive. Seventy-five percent of the population is extraverted; we’re outnumbered three-to-one, and the American culture tends to reward extraversion. 

Here’s what introverts are not: We’re not afraid and we’re not shy. Introversion has little to do with fear or reticence. We’re just focused, and we prefer one-on-one because we like to listen and we want to follow an idea all the way through to another interesting idea. Consequently small talk annoys us.

Many great leaders are introverts and many of our better presidents have been introverts: Lincoln, Carter and the John Adams—both father and son.  No, maybe I’m not being totally fair, but life isn’t fair to introverts. Introverted kids are pressured to “speak up” or we were hounded to “be more outgoing”. 

The philosopher Pascal wrote, “The sole cause of man’s unhappiness is that he does not know how to stay quietly in his room.”  Introverts do. So let’s make this day, Happy Introvert Day. We’ll be quiet and happy, and grateful as another year of "Love in the Time of Cancer" begins.