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    From the monthly archives: December 2010

    Yesterday, I had the loveliest afternoon and evening.  I went and saw the Bodyworlds exhibit  with my husband, my dear friend Susan, and new friend Kit.  It was nothing less than amazing.  Bodyworlds is an amazing display of the human body in movement, health and also in disease.  The technology is plasticized  human cadavers donated to science.  They are beautifully and reverently displayed, and utterly fascinating.  Interspersed with the specimens were elegant displays of relevant information.  Susan and I are both massage therapists, so we were like little kids in a store full of chocolate, greeting the bones, muscles and nerves like old friends.

    After the exhibit, we came home and watched a fascinating movie called “The Living Matrix”, about what they called “Informational Medicine”.  The theory is that illness is scrambled information, and that by restoring the natural blueprint to the bodymind, health can be restored.  It’s a complex topic too big to go into here, but the nugget that got me thinking was the discussion about the Placebo Effect.  One doctor pointed out, if the placebo effect is documented to aid healing up to 30% of the time, why aren’t we using it?

    In my case, I don’t think that belief itself changed anything about my disease.  I think instead that the focus of my belief sent powerful messages to my body, which engaged my own healing response.  I am deeply grateful that my doctors, and my mom, used their own Informational Medicine.

    For whatever reason, I believed with all my heart that I would survive.  I don’t know exactly why I did.  The story I made up served me.  I believed for myself that if I got the lesson, the teacher would leave and not return.  I believed that what I was being asked to do was learn to really love myself, to open my own heart to me.  I asked for any karma I had coming to make it’s way to me right then, in February of 2007.  I decided to receive all that anyone wanted to give me.  I used every tool I knew of to heal my whole life.  This was and is my belief.  I believe that staying on this path will keep me well.

    What I did not know was that this story I was using to empower myself was fragile indeed.  Any doctor could have deflated it easily, with one thoughtless comment or practical observation.  The facts (the statistics) were not in my favor, the truth of which I was blissfully unaware.  How did this happen?

    It started with Dr. Borofsky.  She did not tell me what she thought I had.  She said that it was “very possibly” a cancer, and that we would know more when I received my full diagnosis.  I was scared out of my mind.  I asked her tearfully, “am I going to die?”  Now there’s a silly, loaded question!  Even bolder was her answer.

    “No.  No you’re not”.  She said it with a firm shake of her head.  I believed her.  If she had lied, oh well, I wouldn’t be around to scold her for it!  I believed her implicitly.  I asked her about it later, and she laughed.  She said that what she meant was,

    “no, not now, not on my watch!”  It was good enough for me.

    When Dr. Brown told me my diagnosis, she did not express dismay when she said the words “Stage IIIC Inflammatory Breast Cancer”.  It rolled off her lips like “it’s raining today, shall we eat inside?”  When I asked for a prognosis, she said, “we’re optimistic”.  That’s all I could get out of her.

    Dr. Metkus wouldn’t give me statistics either.  She said, “why do you want statistics?  What good would they be?  No one has ever studied Elizabeth Danu before.”  My friend Flo told me that she had mentioned me to Dr. Metkus, and that the doctor had observed, “she’s a survivor”.

    My mom totally censored the information she sent my way.  The 25-50% survival rate for Inflammatory Breast Cancer never reached my ears.  Instead, she sent me snippets of things that gave hope, and posts from long term survivors on the IBC support list.

    My doctors, and the people who love me, conspired to keep me in the dark about what might frighten me, and they fed me what gave me strength and courage.

    Never worry about giving someone “false hope”.  No hope is false!  There are exceptions to every statistical curve.  This is why I read and re-read “Remarkable Recovery”.  It was full of stories about people who disproved the statistics, and did what they knew would heal them.  A basic principle that I learned years ago is, it’s true if it works!

    My paradigm worked for me, and I am so grateful that the healers in my life supported my belief.  This is the Placebo effect at work, deliberately.

    This site is about Informational Medicine Power.  Take what gives you strength, makes you laugh, brings hope, or whatever else you want, and disregard the rest.  Reality is overrated!

    When I look back at the entry I posted yesterday, I am reminded of the amazing way that so many people stepped in to support me as I went through treatment. What’s interesting to me now is that I don’t recall anyone actually asking me what I would like them to do! I was blessed in the extreme. Very seldom did a need pop up that wasn’t met before I even asked.

    What everybody did was perfect. It was not usually what I might have expected, but it was what each person did best and it was always wonderful.

    The Charge Nurse on the 5th floor at Mills (where I had been giving inpatient massage once a week) organized a meal sign up for my family. She put out the call, and many of my co-workers signed up to bring meals. All I had to do was tell her when the infusions were, and when the worse days would usually be.

    Several of my colleagues in the Massage Therapy department took it upon themselves to see that I got a massage every week while I went through chemotherapy. One of the therapists chose to make soup instead. Every Friday she came over with fresh, delicious soup and a little visit to cheer me up.

    My friend Becky, who went to comedy improv class with me, heard the news of my diagnosis and announced, “give me your address. I am going to send you a wonderful healing card”. And she did. Again, and again, and again, pretty much once a week. These were not just cards. They were wild, wacky, exuberant, sometimes soft, always beautiful amazing works of art. Even the envelope would make me smile.

    My boyfriend, Steve, would call me every day on his commutes, and make me laugh. He also helped me get through it knowing I was still a beautiful woman. On rotten weekends he would take care of me, and on good weekends, our four kids and the two of us did normal things. That was all so important. He stayed with me for most of the journey, and we parted friends.

    My mom, who was far away in Seattle, surfed the net for information and hope, and passed all the good stuff to me and kept the scary stuff to herself. Poor mom. That was a heavy burden, and she bore it without complaint, or even letting me know there was anything but the good stuff.

    Other parents took my kids to school. Flo, my #1 sidekick and all around support person, recruited her husband Don and they took the children out regularly, and helped me get them to bed. When I would call Flo up and complain of how miserable I felt (she knew about it, she’d been there) Don would call out in the background, “remember to tell her it’s TEMP-O-RA-RY!” and I would sigh and take heart.

    Several dear friends and family members flew down from Seattle, or ventured across the bay, to stay and take care of me during the yucky chemo days. Susan (I’ve known her since 6th grade. The kids call her Auntie Pickle), Christie, my mom, my sister, Holle, Aunt Ding Ding (Darlene, Ding Ding since we were babies), my sister in law Andrea, they all took their turn.

    Terry took me to Filloli gardens once lovely spring day. It was perfect.

    My brother set up a Netflix account so I could watch funny movies. The night after my surgery, my mom and my sister howled as we watched “the 40 year old Virgin”. Mom hired me a cleaning lady at the very beginning, and kept her until I was strong again.

    My friend Melissa made me the most wonderful collection of delightful, wacky hats that I had the audacity to wear frequently. They always brought a grin when I went to the infusion center with one of those on my head!

    So many people watched my Caringbridge journals, and left wonderful messages in my guest book. I would go and read them when I felt really rotten.

    If someone you know is facing cancer, don’t stress about what you can do to help. Do what you love to do, do what feels natural. You will certainly be a blessing.

    Looking back, I am again amazed and in awe of my army of angels.

    Saturday, April 14, 2007 11:45 AM, CDT
    Four down and four to go, and I am so grateful that this one has not been so bad. Had a great night’s sleep, lots of peace and quiet, kids are having a great time in Seattle so no worries.

    The last two infusions left me so weak by Saturday that I couldn’t even drive myself anywhere. Not having so much growth hormone in the shot has made such a difference. Today I’ve already been out, and will go drive myself to Steve’s later this afternoon. Hooray, day 4 and I can enjoy myself!

    Got a wonderful care package from Becky the Unquenchable, with the usual absurdity all over the outside of the package. Wonderful stuff. I luxuriated in the bath and the shower last night and this morning, with all that wonderful just the right kind of soothing smelly stuff.

    I am also so enjoying my guest book entries. Amazing to hear from people I haven’t met, offering encouragement and hope. Lots of survivors out there! Thanks Diane, you’re as regular as clockwork, and Flo, you’re like warm sunshine on my back on a summer afternoon.

    Isn’t the rain lovely? I feel the soil soaking it up and nourishing my plants, just as all the love and prayers nourish me. I am soaking it all up, and thriving.

    Love,
    Elizabeth

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    I got this delicious link from my dear friend Ann today. This is well worth the three minutes or so it takes to watch. Click on the link and start your Friday night with a big smile!

    A young man and his hummingbird buddy

     

    Why do I sometimes embrace the pain of life without allowing myself the pleasure?

    When I was diagnosed, it had been 20 years since I had been on a stage. It had been longer still since I picked up a paint brush. I hadn’t taken a walk on the beach for months. Rediscovering these things brought me back home to myself. In the weeks before my mastectomy, I painted my room purple, so I could bask in my favorite color while I recovered.

    The day after surgery, I began a piece of art with a Sharpie. I thank my lucky stars that it was not my right side that was compromised!

    Just after I began radiation treatments, I auditioned for the part of the White Witch in a local production of “Narnia”. I had very little energy, and I saved it for rehearsals. I worked out my cancer angst rampaging around and turning little creatures into stone, and cackling madly! Did I feel worse for it? No! It was SO MUCH FUN!

    What’s the big deal about fun?

    Pleasure and fun make me feel the thrill of being alive, and gratitude for it. Fun is exhilarating. Exhilaration means endorphins, the body’s own painkiller. It’s wonderful medicine.

    Things that give us pleasure take us to that place where time stops, and we can become lost in what we’re doing, hypnotized, oblivious to pain or worry. When I’m doing mindless tasks that I don’t enjoy, the clock ticks away slowly, but at the end of the day I feel that time has slipped away between my fingers. When I am completely engrossed in something wonderful, every moment is timeless. I am utterly and completely in the present. This brain state is known to be a healing state.

    I certainly felt that as I sought these experiences, I came back to a life I had forgotten I had, to joy that I had forgotten I could feel.

    Where my life had felt like I was trying to climb out of quicksand, now it felt like my life was something worth fighting for.

    Simple, physical pleasures can make pain fade into the background. When I was receiving chemotherapy, and my body hurt, I was blessed to receive a massage every week. I will never forget the generosity of my colleagues at Mills hospital who came week after week and gave me massage; Jim, Lee, Mike, and my dear friend Susan who came all the way from Pleasant Hill and gave me the comfort of touch. During the hour I received, the aches went away.

    Cuddling with my children, reading them a story, or singing them a lullaby took my focus away from illness and brought it right into the stuff of life, right here, right now.

    Even now, when the spectre of a life cut short is not so directly over my head, I notice that when I neglect these pleasures I don’t feel so well. I feel tense and stressed when I don’t make art, sing, or take a stroll on the beach once in awhile. When life feels like it’s all work and no fun, it’s time for an adjustment. Once I shift my priorities, I actually have more energy and am more productive.

    I also believe that what is most satisfying is usually something of value that I can offer to the world. When each of us expresses most truly what’s unique to us, we find our niche, and the world is a better place for our being there.

    What’s really good for me at the deepest level is a win-win for everyone in my world, and my cells know this.

    My Caringbridge blog was good for me. I looked forward to blogging. When I stopped feeling that I had anything to write there, I slowly became susceptible to the blues. Picking up my blog again, in a new form, makes me happy.

    What makes you happy?


    Thanks for visiting! This site is for anyone facing a cancer diagnosis, recovering from cancer, being treated or caring for someone being treated, and anyone else who needs a lift. I am still here, seven years after facing Inflammatory Breast Cancer, and life after cancer is different than it was before. It’s actually better, for me. Even with the inconveniences and remnants of my cancer fight, being here on the planet, making my unique contribution and being with my family, is a blessing I never take for granted.

    So many of us blog while we are in it, and then, after the heroics, we breathe a sigh of relief and get on with our lives.  I have done that too, with a renewed commitment to my work and to my family, but I make sure to stick around here so y’all know I’m real and that I’m still well.  I know that’s so important when you first receive a terrifying diagnosis, to know that others have beat it.

    While it may seem like cancer occupies your whole world right now, you are so much more than cancer.  Being all that you are, and following your life purpose is how you make it through, for a little while or for years.  I have friends who still deal with cancer and are living longer and better than they ever expected.  Others of us remain cancer free as far as we know.

    And what is your life purpose?  According to the Dalai Lama, it is to be happy.

    If you or someone you know has just been diagnosed, please check out my video below. It’s three and a half minutes long, and could make all the difference. By the way, Martin is my 17 year old son.

    This is my little web sanctuary, offering help and hope to the weary I hope, and some encouragement with your practical information.  Nice to see you.

     

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