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Archive for March, 2008

Another great presenter at the December retreat was Carolyn Scott Kortge, author of The Spirited Walker

http://spiritedwalker.com/

Power Talk for Walkers

“Whether you think you can, or think you can’t, you’re probably right.”—Henry Ford

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retreat.jpgDecember 2007. Retreat.

I went to the site of the guided labyrinth as the sun went down behind the Catalinas and rainy gray clouds were tinged with pink.

The woman who guides the traveling labyrinth program and who spoke this morning talked to a small group of women about how there are no rules to the labyrinth.

She wanted to hear my experience from yesterday and I told her my story of unwinding from my ego, and how I hoped I could create a labyrinth when I got home, and my friend who has a canvas business.

One of the women who came to walk tonight was on the program this morning talking about collateral survivors. She told the story of a 12-year old girl who was dying of cancer and whose greatest fear was being alone.  So her mother made sure she was never alone. And when the girl was dying, her mother got into bed with her and held her while she died. And when the woman got to the end of this story and we – – all one hundred of us — were in tears, she told us that she was the mother she was talking about.  And she wasn’t sure whether she was going to be able to tell us the story.

How hard a journey for those caretakers. What an amazing group of women here. Everyone has stared this disease and mortality in the face, lived with its real possibilities and prognoses and made decisions about what to do about it. Some of us here will outlive other people who have never been given this “sentence.” But everyone here has faced this diagnosis and what it can mean, whether they are the ones with cancer or not.

The retreat is for cancer survivors and oncology nurses. So the question when we introduce ourselves to each other is, “are you a survivor?” (as opposed to a nurse).  Some of these oncology nurses later got cancer.

 Some women here don’t use the term “survivor.”  The question was asked, when do we quit being a patient and become a survivor? Some of us are still in treatment or very aggressive followup. Some say you become a survivor the moment you get the diagnosis. Sarah says she is a “patient” which is what I have been calling myself because I recently finished radiation therapy and I haven’t adjusted yet being “after treatment.”  More on that later.

Edith Eger, one of our motivational speakers, said she didn’t “want to have to be a fighter.” It was hard for me to keep feeling sorry for myself for having cancer when I heard her story of losing her parents at Auschwitz and being a survivor of the Holocaust.  She also says

Contrary to popular belief, there are no victims in this world – only willing participants. You can’t always control your circumstances, but you can control how you respond to them.

I don’t believe that. But who am I to argue with her?

Edith Eva Eger in her bright yellow clothes and scarves.

 

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Start where you are, with what you have, and what you know. And what you love.

December 2007. Retreat. Today the woman who created the traveling labyrinth and guides the labyrinth walks at the retreat was on an advocacy panel. She came to this retreat last year as a cancer survivor and went home thinking she would do many things – start a retreat in the northeastern U.S., support groups, etc. and then realized we have to start where we are, with what we have, and what we know.  And with what we love.

She says she didn’t have much energy, but she knew she loved teaching. And she loved labyrinths. So she created a traveling healing labyrinth on canvas (I thought of my friend who has a canvas business) and she guides the walks. When people finish the walk they are given a journal or clay or pastels so they can capture the experience.

It was the most compelling and exciting thing and I want to make a labyrinth when I go home.

www.labyrinthjourney.com

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tucson.jpgDecember 2007.  Retreat outside Tucson.  Beautiful soft rain falling off and on all day with the top of the Catalina Mountains in the mist. I walked around the grounds today. What a beautiful oasis they have created here with a stream and waterfalls and walking paths through a desert-scape.

I got to talk to Sarah Weddington today. I was thrilled. I spent an entire hour sitting one seat behind her two days ago on the shuttle from the airport but didn’t know who she was at the time because I don’t put myself out there and say, Hello, who are you, tell me about yourself.  I wouldn’t have, anyway, because I heard her say she was tired and was going to rest until we arrived. And I had my headache.

From the back she looked a little rumpled, and her long gray hair was falling out of a comb where it was loosely attached. She was kind when we checked in and offered to let me go ahead because she said she thought I was more tired than she was. I am so glad I refused.

Especially when they introduced a keynote speaker the next day and she came striding out dressed beautifully in power purple-blue with her white hair neatly coiffed and talked to us about her life and her experience with breast cancer.

In addition to her own huge accomplishments, she was also a personal friend of Ann Richards and Molly Ivins.  I wish I could even imagine what friendships — and conversations! –  between those powerful women were like. 

Richards died in 2006 from esophageal cancer. Ivins died in January 2007 at the age of 62 from breast cancer. 

Weddington says about her experience with her own cancer:

I’ve come to think of cancer cells as being like Osama bin Laden. We don’t know if he’s dead or alive and hiding in some cave. Similarly, I don’t know if the cancer is dead or alive and hiding in body caves and waiting to jump out and shout “boo!” I’m grateful to be NED, but I’d prefer to have a more permanent diagnosis.

…… My journey continues day by day. I am simultaneously acknowledging uncertainty and planning for the future. I am still searching for Osama but also finding more reasons to celebrate life.

I would have gone to Tucson just to get to meet Sarah Weddington. Her work and dedication and drive is astonishing. And I am humbled to meet someone who knew Ann and Molly. We all suffered with the loss of those two women. 

May there be no more Osama for Sarah.

Today I was making a cup of tea during a break when I saw Sarah in the hallway and I got to introduce myself and tell her how much I admire her. And I told her how much we miss Ann and Molly. 

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oneDecember 2007. At the retreat.  I notice women walking slowly.  If I look closely I see some women are a little off-balance, have just a little limp. Everyone looking their best. Putting on a bright face. But some of the women talk of staying at the main building between events because it is too difficult to walk to their cabins and back.

Of course there are women in caps and wigs. Some have painted on eyebrows and may be wearing false eyelashes.

I also see young women who, if we were not here at a retreat for cancer survivors, I would not notice are taking slower steps, their tentative walk. A young woman with blond hair dressed in white slacks, a pretty girl, hangs on to the railing to walk up a few steps. After I notice that, I also notice that she is quite pale.

Too many women, far too many women, and very many young women, struck by this disease. Going through “the best years of their lives” with cancer, and treatment, and the prognosis.

How much of it from our toxic chemical-based consumer culture where we are sold things because instead of using the precautionary principle, we have to prove too many people are harmed before we stop something?  The vaccinations we give our children, that are required by the government to keep them “well.” Paint on our walls, chemicals in our carpet. Flame retardant on our baby’s pajamas. The wood on our decks and in play yards. The plastic bottles we drink our milk, juice and water from.

The plastic baby bottles, nipples, and pacifiers our babies suck on the first years of their lives. the lead in the toys we buy them to play with.  The pesticides we slather on their skin of ward off mosquitoes who bite and may give them West Nile virus.

And sun screen? The screen that limits our exposure to sunlight, where we get our Vitamin D, which helps prevent breast cancer. Don’t go out in the sun or mosquitoes without covering up your skin. Wear dark glasses.

All of these seemingly innocuous habits of our lifestyle somehow interrupting the processes that maintain our health and ability to ward off disease.

NOT our thought processes. NOT our emotions. NOT our fault.

But what are we told:  KEEP A POSITIVE ATTITUDE.

ATTITUDE IS EVERYTHING.

 THE MOST IMPORTANT THING IS TO STAY POSITIVE.

In other words, focus on what *I* did that caused this disease and what *I* must do now that I have it to make it go away and so it won’t come back.  Like being told to be a good girl and smile while we are raped and beaten.

Smile! Don’t frown – you’ll look ugly! Don’t make waves. Don’t upset the apple cart.

Don’t focus on the environmental causes of this disease.

Change MY diet. Change MY exercise program. Change MY vitamins.  Change MY attitude.

Be a cheerful little cancer patient!  Smile!

Don’t attract attention.

And think of this as a BATTLE.  Use the terminology of WAR. 

I’m supposed to be a SURVIVOR (not a patient.) At least up until the time we die from this disease at which time they will say what a BRAVE BATTLE we FOUGHT but LOST.

Heaven. Forbid.

The more appropriate analogy might be that we are being held prisoners in a hostile and toxic environment by this chemical and consumer-based society and are direct casualties of its war against the environment and we must recognize that changes are only made when the numbers of collateral casualties reaches some critical mass that makes it no longer acceptable.

What increase in the rate of cancer will it take before our government begins to even have a dialog about the ingredients in the soap, lotions, shampoos, and cosmetics that women use daily (and we put on our babies?) that are already banned in the European Union?

Campaign for Safe Cosmetics

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December 2007. At the retreat. 2:28 a.m. awake and can’t go back to sleep.  Watching the weather channel and a movie about a talking horse (with the sound off).  Turned off the tv and the fan and can hear a gentle rain on the roof of my casita.  Looked out the patio door. The gardens are lit with low lights along the walks. A nice rain. I’m disappointed there won’t be any sitting around a kiva fire in the morning. 

me

Me in blue jacket next day walking back for lunch after morning session.

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tightrope.jpgDecember 2007.  I’m hearing stories from women with ovarian cancer who were misdiagnosed with “stress” and “irritable bowel syndrome” for a long time before they were finally correctly diagnosed.  Ovarian cancer is very treatable if discovered early.  One woman did research and then insisted on a certain abdominal ultrasound. Her doctor kept saying she didn’t need it.  She was very persistent and finally talked the doctor into ordering the test to “relieve her fears.”  The test result: ovarian cancer.

Common theme was how to be vigilant but not anxious. And how to deal with doctors who say they will do tests they don’t think are necessary just to relieve patients’ fears.

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