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Posts Tagged ‘health’

I don’t know why it took me so long to discover the Positives About Negative blog by Patricia Prijatel, who writes as a survivor of triple negative breast cancer. Her blog is full of information about this type of cancer.

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After not posting here for quite some time, I had a very flattering comment from a reader to say my voice was missed, and that people worry when too long a time goes by between posts. I hadn’t thought of that. I follow some other people who are journaling about their experiences with cancer, and know I’ve been concerned when I don’t see an update from someone who posts regularly.  But for some reason it didn’t occur to me that any of my readers would be worried.

So thanks for commenting to let me know.

In February I posted about the need for patient navigators, to help terminally ill people who are overwhelmed by this disease itself and do not have the resources and energy to deal with the bureaucracies of health care and insurance. My friend was farther along in his disease than we wanted to acknowledge.  He went into the hospital in March, we thought for a few days to resolve some side effects of a chemotherapy medication. One day a perky doctor that we hadn’t seen before even told us we could take him home that day. We said we needed some preparation and information about home health care and were even told that a physical therapist (whom we knew nothing about) said the patient didn’t need any home care assistance. We were astounded, since he needed help for all basic needs and hadn’t been able to eat or drink anything. So that discharge was postponed, ostensibly to give the hospital time to get the home care arranged.

So one day we were told to make him eat and drink so he could go home, and the next we were told if he didn’t want to eat or drink, not to force him. It was completely baffling and we had no idea what to expect. That, combined with our denial, didn’t prepare us for what was next – we were still preparing to take him home. Then we were prepared to take him to hospice.

We lost him on April 4.

I have been thinking about the post that I wrote about my resistence to using the metaphors of war for this disease of cancer. I was open to the possibility that I was wrong. After watching what my friend went through, the first post I wanted to write when I was able to come back to this journal was to say, “I was wrong. It is a war.”

I have not been able to articulate more of that yet. I have not been able to say much of anything. Our grief is overwhelming.

During this time, I was supposed to be helping start a local support group for cancer survivors, to finish a small directory of resources available for cancer patients and survivors in our little town, and to participate in a training to volunteer to help other breast cancer patients, and setting up an information resource center in our local hospital. All I wanted to do at that time was to not hear any more about cancer. Not to think about it for a while. What a luxury and privilege that would be. And I use “privilege” in the most pejorative sense.

We’re not able to have that luxury. We have to just keep on – taking care of ourselves and hoping that we can spare other family and friends more of this grief. Taking care of others that we love. Taking care of people we don’t know. Raising money for a cure for strangers. Finding information about prevention and good health for our children and grandchildren. Carrying the memories of those who didn’t want to go but are no longer here.

I don’t know what else to say right now. I will be back. Thanks for caring. I love all of you who care enough to read this.

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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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