Language Makes a Big Difference in Cancer Land

Here is an excerpt from a New York Times story about the power of the word "cancer". Test yourself: what is your reaction to lesion, abnormal cells or the word cancer?

Words prompt women to seek surgery

Women were more likely to want surgery when they were told they had a type of breast cancer than when the diagnosis was a lesion or a group of abnormal cells — even though all three scenarios described the same disease. The findings, reported Monday in the journal JAMA Internal Medicine, offer a new way to gauge the power of the word "cancer."

The words doctors use to tell a woman she has ductal carcinoma in situ can make a big difference in the treatment she chooses. DCIS can be an early form of breast cancer. But in many cases, the tumor never grows beyond the milk duct where it was found. If it does invade the surrounding tissue, it can take 40 years to do so.

— New York Times

Looking in a 60-Year-old Closet

I turned 60 a few weeks ago. As my birthday approached I got quiet and started listening. Other people were asking me how I felt about this “special birthday” and I seemed OK with it, but I really wanted to know. I have that habit of intense self-reflection: Did I feel old? Aged? Different? Any denial?

As many folks will tell you about 60, it’s the number not the age. Sixty sounds so old; that’s the big thing. And there is something to that because 60 was old when we were kids and our parents were that old.

But I’m finding something new that is creeping in with this significant number –I’m feeling a good kind of urgency in my life--and I think it’s a factor of not just my birthday and the number 60 but also from living in Cancer Land. The reason there is a cultural reaction to 60 is of course because in some way it does signify age—and the reason aging is a signifier is that it’s, yes, all about dying.

The mantra that arrived in my head about a week before my birthday is this, “If not now, when?” This birthday and this number 60 tells me that I do not have all the time in the world, so to quote Meatloaf, “What’s it gonna be?”

“If not now, when?” is asking me—when are you going to stop caring what other people think? And when are you going to do your creative work? And if you really do want to play the violin again, when are you going to make that call and get started? And a biggie: When are you going to dress only to please yourself—and what exactly—would that look like?

I like clothes a lot and so clothing is an easy language and symbol for me. I look in my closet and I wonder, “Do I really like my own clothes? Or do I own these so I can fit in, to be liked, to present a certain kind of professional appearance…“If not now, when?” am I going to change that?

But my wardrobe also confronts me at 60 in another slightly morbid but also invigorating way: There is a very good chance that most of the clothes in my closet will be there when I die. I buy good things and I keep clothes a long time so the rack of jackets and drawer of scarves I am looking at today is pretty close to what John and my friends will sort and pack after my death. I am looking at what they will look at, and it makes me ask, “Am I OK with that?”

I told this to one friend who was horrified but I swear it’s a very helpful perspective. At 60 it absolutely makes me ask: Am I clogs? Am I skinny jeans? And do I really need another leather bucket bag?

In this way I am enjoying the intensity and self-examination of sixty. We’ll see what the rest of the year—and my closet holds.

New Books About Cancer and Cancer Research

In today's Wall Street Journal there is a review by Laura Landro of two new books about cancer. Her review as well as the two books make good reading.

"The Truth in Small Doses" by Clifton Leaf--a former Fortune editor and survivor of Hodgkin's lymphoma, focuses on the limited progress made in the war on cancer. He challenges the "cancer-industrial-complex" and with his business analysis skills analyzes the overspending on drug research at the cost of early detection.

"The Cancer Chronicles" is by George Johnson--a science writer who has cared for his wife through her long and excruciating  aggressive gynecological cancer. He focuses, naturally, on the science of cancer, environment, trigger cells, molecular change and the body's biochemical responses.

It's interesting that both professionals chose to find their own way into the mysteries of cancer based on their professional expertise--business and scientific inquiry--after being touched most personally by the disease or sets of illnesses that cancer represents.

Here's the link to the story in today's Wall Street Journal. Take a look:

http://online.wsj.com/article/SB10001424127887323639704579012772893323140.html

Poet Marie Howe in Albany September 17

For Albany readers: Here is an upcoming event that you should not miss. Marie Howe, poet, teacher, family caregiver and Poet Laureate of New York State, will be reading on Tuesday September 17^th at The New York State Museum in downtown Albany. The reading begins at 8pm.

Marie is one of the most accessible poets—her language is direct and powerful. And she is a wonderful performer.

Mark your calendar. Invite a friend.

My favorite collection of Howe’s  poetry is called, “What the Living Do”. Here is the poem that gives its title to that book:

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.

Yoga for Cancer and Yoga to Improve Sleep

Sleep and lack of sleep is an issue for cancer patients and for cancer caregivers. Chemo and infusion and pain and nausea interfere with patents being able to sleep, and a partner with cancer who is not sleeping makes sleep hard for cancer caregivers. There is also the beeping and the buzzing of infusion pumps, occasional alarms going off and even when they are not then there is the fear that they will.

I don't miss those days. But I member how much sleep it cost both of us. Sleep meds can be a help but they have dangers and side effects as well. And I was always afraid that if I took Ambien that I'd miss the chemo alarm or even worse, I'd  "wake up" Ambienated and who knows what would happen in that zombie state.

Here's an article that recommends yoga for improving sleep in Cancer Land. Take a look and try some gentle yoga. Of course yoga will help with more than sleep--it will also be an aid to the anxiety that accrues to patient and caregiver alike.

You can find introductions to yoga in every community center, library, YMCA and online and on YouTube. Here's the link:



http://psychcentral.com/news/2013/08/19/low-intensity-yoga-improves-sleep-in-cancer-survivors/58644.html

Golf for Good-- is Great

John is a terrific golfer and perhaps the hardest thing he faced with his surgeries and rounds of chemo and the dreaded FU  pump was that it made golf impossible for so long. It didn’t help that his surgeon (the surgeon, really!) would make friendly golf chat each time we saw her and then when asked, “Can I play golf yet?” would say, “No, not quite yet.” Grrrrr

Getting golf back was just as important as getting sex back. Hmmm, come to think of it the doctors weren’t very good at talking realistically about sex or golfJ

So it’s been a delight for John to have golf back in his game and that we can play this game together again.

This week we played in a charity tournament. That’s a first for us because I’ve been pretty shy about playing with other people—especially really good golfers. But we said yes to play for Unity House and Catholic Charities and to play together. And it was fun!

I think having to play fast made it easier for me, and knowing that it was a “best ball” scramble format meant I couldn’t hurt the team—so I stepped up, didn’t agonize and just hit the ball. And hit well to my surprise. And loved spending five hours on the course in the cart with John. I had no idea we could enjoy that so much either.

This week I have had a lot of gratitude for all we have been through—some of it pretty hard stuff—but it got us here and made us appreciate every moment we have together. If there is an upside to cancer this is a part of it.

Talking to the One You Love

One of the reasons that I will keep doing all of my personal growth work is that I love to keep on learning about myself. True, it can be painful when you have one of those moments (weeks/months) when you realize, "Ugh, how long have I been doing that?" And the "that" is something you have been doing for ages and not thought twice about.

I had one of those Aha! moments on vacation a few weeks ago. We were in Paris—City of Light and city of romance. We spent long days walking and doing museums and just going and going and of course, I got tired and then I got cranky. Now that also happens if I vacation with a friend but in this case I was with my dear husband and I realized (after several days) that when I got tired and cranky that I was speaking to him in a really mean voice. You know that voice--kinda whiny and blamey and with that "you are the problem” undertone? Yeah, that voice.

One night in the hotel room I heard myself doing it. Oh. And I thought, "If I was traveling with a friend--even if I felt awful or ill I might say how tired I was or that I was unwell but I would not use my "You idiot--it's your fault" tone of voice. And I thought, "So stop doing that right now." And then I thought, "This is a gift of my therapy and meditation practice--and I want this." I knew I was doing it; I wanted to stop; no excuses and no rationalizations. And I'm grateful for that.

Yes, there's a generous slice of humble pie to eat. Sure, but it is a kind of yummy pie when you realize you can actually change.

A Very Married Romance

Saturday Night is date night...yes, both euphemistic and for real. This morning we planned our kind of romantic/intellectual night: Saratoga to our favorite book store, Lyrical Ballad and then to SPAC for Yo Yo Ma on the lawn.

But life happens and I went to work planning to stay a few hours and it turned into a whole day. And there are still errands to do before Monday. So this date night becomes one part adventure--a visit to the new Honest Weight Food Coop and one part fun--watching the Giants and Steelers preseason game ---(that is a showdown between his team and mine)  so maybe we can place some sexy bets and make it a little more "date-like" by going to a sports bar?

I have to keep reminding myself that we spent ten days in Paris to that accrues thousands of romance points in advance.

Widow--the Illusion of Being Prepared

We are just home from Paris. It was my birthday celebration and so I am reading everything about Paris while the images and addresses are familiar. It makes the reading so much more fun to read after rather than before.

Tonight’s book is “Paris, A Love Story” by Kati Marton—journalist and political correspondent. Her first marriage was to Peter Jennings and then, later, the great love in her life—a 17 year marriage to Richard Holbrooke. Paris was an important part of both marriages but it was Paris that was at the center of her romance with Holbrooke and crucially with her transition through grief after his death and into the next phase of her life.

I had picked up this book a few years ago but with some sense of voodoo I was afraid to read it when John was so sick. Magical thinking? Denial? I didn’t want to know or think about death and grief and widowhood.

Today I wonder if it’s the opposite—I read as inoculation, mental preparedness?

Don’t I know better? Nothing can prepare you. I know this from watching my mother’s grief and watching friends and yet, and yet. Maybe it’s kind of like building the cognitive life raft—I want to be ready…or maybe I just want to know that women survive when their husbands die.

There has been a lot of death in my life—parents, brothers, sisters, friends…so maybe it’s more top of mind? I know what a ringing telephone can bring. And just yesterday I was remembering my astonishment years ago when I learned—from a phone call—that my brother Larry had died—and I watched as my body bent completely in half before the news had even completely registered and I thought to myself, “My God, it’s true—we are literally doubled over by grief.”