Archive for March, 2008

Financial help

Financial help for people with cancer – pamphlet listing resources and contact information in a PDF file from Cancer Care

One of the resources that was hardest for me to find (and one of the most important things for rural women) was transportation to doctor appointments and treatment.  Were there pools of volunteers who could drive on the days I wasn’t feeling well enough to drive myself?  (My doctors and the nearest radiation treatment center are 2.5 hours one way.)  Is there a shuttle bus? How much does it cost? (I learned it cost $150 per trip.  Five days a week for six weeks at $150?  That wasn’t going to be an option.)  Is there financial assistance to help with this cost? 

Finding these kinds of resources can be very difficult. We need to have lists of these resources and information in our local clinics and hospitals. I am working with an advocacy group to get this information to newly diagnosed cancer patients in my community.

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Online advocacy training

National Coalition for Cancer Survivorship provides online training on how to become a legislative advocate.  Check it out here.

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Survivor toolbox

Cancer survivors who write about their thoughts and feelings may improve the quality of their lives, according to a study covered in a New York Times blog on February 26, 2008. The study, which appeared in The Oncologist, found that cancer patients who wrote about their emotions experienced benefits immediately after the exercise, and that the positive effects remained three weeks later.

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“Studies show that nearly a quarter of cancer patients will have symptoms of depression or an anxiety disorder during treatment. However, feelings of anger or sadness about your cancer and the changes it brings are normal and may actually help you cope.  . . .  The National Comprehensive Cancer Network www.nccn.org has developed systematic distress management guidelines that can be used by health care professionals as a screening tool.  (NCCN experts chose the word distress rather than depression because they felt the term carried less stigma and more accurately described patients’ emotional states.) . . ”  Cure Magazine

The article suggests that for these people, support groups, buddy systems and cancer education programs are useful to help patients gain a sense of competence and control.

Support groups and other support systems may be laking in rural areas. Self- and community advocacy should include identifying this need and helping to encourage the formation of support groups.  Should support groups be facilitated? Experts think that facilitated groups are more helpful. How do we get facilitators for these groups?  Call the cancer advocacy programs that serve your area and ask them how funds raised in your community are spent and urge them along with your local clinic and hospital to provide a facilitated group in your area.

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“Labels about cancer can lead us to guilt, which can be a huge burden for newly diagnosed patients. You may feel guilty about causing your cancer, about having your family go through it, or about not being able to do what you did before, if only for a short time.  . . .

It’s not unusual to try and find an answer to why your cancer developed, but focusing on the cause can lead to additional stress. A recent study of women newly diagnosed with breast cancer showed those who blamed themselves for their cancer experienced higher levels of distress than those who didn’t. The findings also suggest self-blame negatively affects a patients’ ability to psychologically adjust throughout the year following diagnosis.

. . . you have the capability to stop blaming and judging yourself by realizing you cannot change the past, and must concentrate on moving forward. Guilt is a barrier to living your life fully . . . .” Cure Magazine.

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attitude.gif“As you begin to tell others about your diagnosis, you may feel pressure to maintain a positive attitude, which can be especially difficult when you are scared, anxious, or not feeling well. False optimism is unrealistic, and experts say feeling that you are not ‘doing cancer right’ can be a huge burden. No compelling evidence exists that emotional outlook affects survival, yet people unaffected by cancer often expect and encourage those with the disease to exhibit a positive approach despite how they are really feeling.

 (On the other hand) . . . . .”People, as well as their reactions to cancer, can differ greatly. For some, maintaining a positive attitude is their preferred method of coping.”  – From Dealing With Emotion: How to recognize normal reactions at diagnosis and when you need help. Cure Magazine.

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Sign up deadlines will start running soon for this program so check it out!

Casting for Recovery provides fly fishing retreats at locations around the United States. Retreats are specifically designed for women who have or have had breast cancer.

Fly Fishing – “A Sport for Life” We enhance the lives of breast cancer survivors by offering no-cost retreats tailored to promote and support mental and physical healing, shared experiences, and the hope that comes from learning new skills.

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


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.


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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.



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 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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Fireside Chat

tractor.jpgDecember 2007. Tonight in a fireside chat a black woman from Philadelphia said she was so glad she came to this retreat and she was sorry to see so few black women here.  She mentioned cultural differences and said that she didn’t find out until after she was diagnosed with cancer that there were also many other women in her building who had cancer.

Rural women also don’t disclose much. I know women who just had a mastectomy and went home and tried to go back to work right away – one even went to the cornfield and tried to drive truck a couple of months after she got home, but she said, “it was a little too soon.” I didn’t know she had cancer until after it got around town that I did, and she came up to me in the grocery store to ask how I was doing. I hear stories about other women who “didn’t think anything of driving 5 hours to treatment and back every day,” but I don’t believe they are true. I believe people like to think that women here do that.

That shows how insane we are.

An oncologist from Las Vegas said, well, rural women can just get on the Internet. Then shortly after that she said the Internet may give too much information and sometimes ignorance is bliss.

I didn’t say I knew a little bit about rural women and our slow dial-up connections that tie up our phone lines while we try to download the huge email files our blissful urban cousins send to us, or load a message board for cancer survivors.

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labyrinth.jpgDecember 2007. It is not a perfect world. I had stared at the photo of the labyrinth for months on my notebook desktop. When I finally arrived at the retreat for cancer survivors and oncology nurses and found my way along the paths to the labyrinth, there was a construction fence around it. Loud men and their machines dominated the atmosphere, just like in real life, and I had to decide whether to let them come between me and the meditative experience I had planned. Just like in real life.

The fence blocked the view of the Catalina mountains from the backdrop but I could see them overhead – craggy, mystical, foreboding, not green and lush and soothing like the pine forested Rockies. I thought how inhospitable the mountains would be to people walking over from Mexico.

I was disappointed – should I go ahead and try to walk the labyrinth the way I found it? It had taken every bit of energy I had and then some to make the trip. I was not coming all this way and not walking the labyrinth.

So I started the walk in spite of the loud men and their machines and the imperfect world.

I picked up a small rock to carry with me to begin a meditation with, as I did with all my walks. It represented my self-centeredness and my self-preoccupation, especially since my cancer diagnosis. It was broken on one side. It was rough to the touch. It had been broken traumatically, not worn smooth over time.  It hadn’t been aged in water, but was ground by sand in an arid place.

I noticed snake holes in the ground. This would be a place to be wary of rattlesnakes – cascavel – in warmer weather. Maybe even now. The holes looked new in the sand in some places.  I walked around them. I continued on in spite of them and knew I would have done so even if it had been warmer.

There was no one else around. The wind blew my hair. I wore my shawl around my waist in case I needed it around my shoulders before I was done.  The clouds were gathering at the top of the mountains. A golden thread of sun lit the edge of the clouds.

I was full of my dissatisfied self as I walked, my regrets and resentments and recriminations. I was angry and afraid because I had cancer. I had surgery and six weeks of radiation completed six weeks before the retreat. I was afraid I made the wrong decision about chemo.  I thought I would be glad to be back to my “normal” life at work but I still didn’t feel good.  Everything took an enormous amount of effort, including making this trip, and I acted like a baby when I got there, needing special attention even though I was in a large group of women who also had cancer and many were in worse health and had been through much more than I had.  What was wrong with me — could I go nowhere and just be a part of a group? Wasn’t there anywhere I fit in? Why was I here? Why couldn’t I just relax and enjoy this?  Me. . . . me. . . .me.  Whine. . .. whine. . .whine.  I was distracted by these thoughts more than the noise from the construction on the other side of the fence.

 The path became narrower and the turns sharper as I neared the middle of the labyrinth. I reached the center.  I took the rock that was my ego and selfishness and placed it on a pile of rocks of various sizes. I didn’t put it on the top – just to the side. As soon as I let go, I realized that each little pebble and stone represented a person who had entered here looking for something and found a memorial to the hope we held in our spirits. I saw them lay down their pain and lift up their prayers: a sisterhood. A community. Not individuals. There was healing here in this unity.

I turned around to walk the paths back out, to complete my counter-clockwise journey, an unwinding of what had been too tightly wound and as soon as I faced the other direction I was no longer thinking of my broken self, my baby-ness.

I picked up a rock for my sister, because she loved my picture of the labyrinth. I saw another little smooth stone that had lain under the feet of those who walked and meditated here and I picked that up for my friend _______, another breast cancer sister. And I picked up another one for ____ who has some trials but hasn’t told us what they are. I picked up another one for _______, the first of the Towandans to tell us she had cancer and has been through this for five years now.

I thought of the talk at the retreat today:  Get Strong. Stay Strong. Help Heal. I continue to hear that same message as in AA: turn your thoughts to others. Heal yourself by healing others.

It may not change the “prognosis,” the numbers, the survival rate, the chance of recurrence, and no one would study that because there is no profit to it in the business world.

But it probably changes our entire perspective on life, the way it does when it is practiced in AA.

When we begin to heal, we want to turn our thoughts to others and share our experiences in ways that help people through things we may not have had help with. To give a hand where we really wished we would have had one.  And that helps us.

  (An advocacy panel included a presentation by Janine Mariscotti, M.S.W., L.C.S.W. who has a web site called LabyrinthJourney.)

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