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    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!

    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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    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.

     

    You may have noticed my new icon to the right, the link to Army of Women. This organization is the brainchild of Avon and Dr. Susan Love, and it’s purpose is to end breast cancer by learning how it starts in the first place.

    This is a question researchers have been asking, but finding people to participate has been the main obstacle. To find out the answers, researchers need no less than an army!

    If you have never had breast cancer, you are needed. If your mother, sister, grandmother, or any other close relatives have had breast cancer, you are needed. If you are fighting it you are needed. If you are a survivor, you are needed!

    We are all needed. Women, men (yes, men!) survivors and everyone else, the research that will answer the question will take an army.

    If you join the Army of Women, you will be invited to participate in research, but are in no way obligated. Being part of the Army of Women means that you stay up to date on what’s happening in the research world. You can be part of it at whatever level you want to be.

    I’ve joined the Army of Women. I’ve joined it without hesitation, for my sister, my friends, my mom, so many women and men that I love. Most of all I joined for my beautiful 11 year old daughter, Felicia. I am imagining a world where she can grow up free of the fear of breast cancer.

    For more information, click on the purple Army of Women link on the right. Please join us! You are needed!

    As I read through that old post, I remember the feeling all over again, and wish I could always hold that same reverence and appreciation for my health.

    Painful experiences are soon forgotten, because we’re human, they’re a downer, and we want to get on with life.  The part of my painful experience of cancer treatment that I want to keep is tenderness toward my body, and appreciation of my health every day.

    I had great intentions of never taking my health for granted.  At the time, I couldn’t imagine doing anything else.  I would never fill up on sweets, burn the candle at both ends, forget to take my vitamins or skip eating  my veggies.  I  never intended to let my children know they were in trouble by using their full names either, but that’s another story!

    Guilty on all counts, alas.  Life gets going, ambitions reawaken, perhaps with a greater sense of urgency than they did before, and I forget how good my body has been to me.  My body rode the wild wave of chemotherapy without interruption.  My body has bounced back amazingly well.  I think of this and feel guilty for forgetting to do all the things I couldn’t wait to do.

    I have learned over the course of my tumultuous life that guilt is never a good motivator.  When I beat myself with the big shame stick, I only do more of that which I feel guilty about, because shame makes me weak, not strong.  What works better for me is appreciation.

    As I read through those words I wrote three and a half years ago, the feelings all come flooding back.  The amazement of feeling ok after chemo, the exhilaration of anticipating owning my own body again, the sense of accomplishment that I had made it halfway through and was on the downhill slope.  I remember those two months of watching my breast return slowly, the red hardness receding with each infusion, feeling deep in my bones that I was going to win.  The next four infusions were harder, but I knew that soon I would cross the finish line and begin the next stage of my 2007 Ironwoman triathlon. It was painful to get my breast back and then have to let it go.  I appreciate the one I still have all the more.

    I can get wildly off track and really neglect myself at times.   Then I come to my senses, take the time to feel wonder, sensation, the sensitivity in my fingers and hands that Taxol stole from me for awhile.

    So, the challenge and the reward is to still appreciate what I have while I am busy being and doing.  I don’t want the slow times I had during and after cancer.  Those times of space and reflection were perfect for me then, and the time for that is over.  Now it is time to learn how to move towards what matters, doing what makes me happy, but still appreciating the gift of all the things my body is able to do today, tomorrow, the next day.

    I still haven’t figured out exactly how to do that.  It’s inconsistent at the moment, still learning how to balance reflection with doing.  Maybe I need to put up signs.

    “Elizabeth, have you thanked your body today?  Are you being as good to your body as she deserves?  If not, take this moment, right now, to do something nice for your amazing, healthy body!”

    I am so grateful for my healthy body, and grateful that I still can cruise in the fast lane when it really matters.

    Friday, April 13, 2007 11:58 AM, CDT

    The sun is out, and it’s what I usually call Bleak Friday, but I am not at all miserable, in fact I feel quite well! Just a little queasy, and the solution for that is simply to nosh all day. Not a bad job, considering.

    This is great. The first half is supposed to be the worst, and this is it. Smooth sailing now? !!

    I didn’t get outside yesterday, it was cold and windy. Lovely out today, though. Time to putter in my garden, just a bit!

    Spoke with my family in Seattle, and the kids are having a fabulous time. Martin is with his second cousin, Damien. Those two have been fast friends since they were 3, and no matter how much time passes, they meet again as if they haven’t skipped a day. This left Felicia with Auntie Andrea and Uncle Paul all to herself. Her Royal Highness had a manicure and pedicure ( she described her blue toes with flowers on them, with great glee ), sushi for dinner, and then dessert at the famous Dilletante Restaurant (it’s all about chocolate… and such chocolate!). Today Felicia is with Grandma Anne, perhaps going on a ferry or some such adventure.

    I spent yesterday lounging, reading “The Other Boleyn Girl” (thanks again, Andy!) and reveling in my good fortune to be feeling so relatively well.

    Never will I take my health and energy for granted again! When I am through with chemotherapy I will gleefully fill my body with all the nutrition it can hold, and spend my energy in celebration of health. While I am on chemo, I cannot take herbs, or large amounts of antioxidants, because chemo is believed to work best in an oxygen rich environment. When chemo is done, my body is mine again!

    Then, after surgery, the cancer will no longer be my constant companion. It is hard, living with it, feeling it in my body, always aware of the size of it, even as it shrinks. I am so looking forward to Dr. Metkus wrapping it up in a neat little package and taking it away.

    Today I am going to ignore it, because it’s days are numbered, and I’m halfway through the worst. Thanks Steve, for getting pictures of the rugrats on my website, and for calling me every morning on your way to work. It starts my day right, rain or shine.

    Love and Blessings,
    Elizabeth

    As I have become more and more overwhelmed by what I want to do and more serious about it, I have been noodling all over cyberspace.  What I have discovered is that there are tons of wonderful resources out there!  The trick is finding them.

    What I do is go to a blog I like, then go to a blog she likes, and another, and so on.  It’s a wide world in cyberland, and a wonderful community of serious bloggers who are giving hope, educating, and dealing with cancer with courage and grace.  Today I found Being Cancer Network.  The blog was conceived by a two time survivor who beat the odds, and is now facilitating a blogger network to help people cope with any diagnosis.

    What I am finding is that there is a vast, amazing flow of information and inspiration going on, and all the ideas I have floating in my head about what will be helpful are already being implemented!  That is just SO amazing and fantastic.

    My vision of this site is expanding and coming into focus.  All of this great stuff I’m finding will be traceable from here!

    I found Survivor Profiles.  I’m sure I will add some of my own, but there are some already out there that I can link to.

    The blog network is inspired.  I didn’t think of that one at all!  What a great resource!

    I would like to profile supporters as well, or find supporter profiles so that people who are walking with a loved one on the cancer journey can find wisdom and support as well.

    I think that the most important thing I have learned, that I feel is hugely important to my thriving into the future, is that passion is life force.  I have had many occupations, both paid and unpaid, that mattered to me.  When I was a single mom with a huge responsibility to (in my mind) sacrifice creative passion to practicality, I failed to thrive.  With lack of passion, and with constant, relentless stress, my body was too depleted to fight the beast when it invaded.

    Today, the day after Thanksgiving, I enjoyed time with my daughter, her friend and her friend’s dad.  We saw “Tangled” which was just delicious!  I enjoyed it immensely, and when I got home I happily greeted my computer, ready to roam around looking for good stuff, and ready to talk about it.

    All work and no play is no fun and not good for anyone.

    The perfect work is the one I’m glad to leave play to come home and do!

    If any of you, my readers, discover another gem, please tell me!  I can’t wait to post about it right here.

    I have always loved Thanksgiving.  It’s a welcome pause to stop and enjoy my family and my many blessings.

    Thanksgiving of 2007 was poignant, and each one after that is a benchmark.  I am another year older, and then there is Thanksgiving!  The focus is the turkey, the festivities, family, or perhaps loneliness and hardship, which good hearted people try especially to ease at this time of year.  What’s great about this whole hoopla is that we are reminded to give thanks, and our churches, workplaces, schools  and communities build gratitude into business as usual.

    What if gratitude IS business as usual?

    My whole perspective on this has changed considerably.  I am grateful that my children are little stinkers and made me so mad I wanted to tear my hair out this morning.  Why?  Because when Thanksgiving came three years ago, I was still weak and sick.

    When I was undergoing extremely aggressive treatments for an extremely aggressive cancer, my little pistol of a boy was exquisitely well behaved.  That was because he was scared out of his mind.  That he is an irascible 13 year old is simply beautiful, and I am so grateful for that!

    When I had my 36th birthday, my baby boy was five months old.  His godmommy had played with him earlier in the evening, and as I rocked him in my rocking chair, singing him a lullaby, he anointed me with all the churned contents of his little tummy.  I laughed, got us both to the bathtub and got us washed off, and reflected on what a gift I had just received for my birthday!  I had miscarried before this beautiful boy had come into the world, and the privilege of little baby barf was just perfect.

    Having faced the very real possibility of not having the privilege of getting old, I am grateful for my wrinkles, my occasional aches and pains, and that I get to be around children a lot.  I am grateful for the smell of rain.  I am grateful that I can write, that I can sing, that I can be taxi service for my 11 year old socialite daughter.

    All of us grumble.  It’s human, and it’s comfortable.  Gratitude has not always come naturally to me, but now it does.  Not a day goes by that I don’t give thanks for my life, and every beautiful thing in it.

    Every day on this earth is a gift.  None of us know when our time is up.  We could be called home at any moment.  The lingering memory of my cancer experience ensures that I am keenly aware of this.  I am grateful for the exalted and the mundane, the frustrating and the outrageous.  Sometimes the joy is so huge I feel that I can’t contain it, nor would I want to.

    I am grateful even for suffering.  I know what I can endure, and I have a glimpse of how much love my heart can hold.

    The Sufi Master Hazrat Inayat Khan said, “God breaks the heart again and again and again until it stays open.”

    Blessings to you and yours this Thanksgiving!

    You can find all kinds of information on the web, and in your doctor’s office, about what chemicals you are being treated with and what they might do to you.

    Chemotherapy at first struck dread into me, thinking about what it would do to my body.  I wanted to do the things I had always done, to try to minimize the harm and keep my body in balance throughout, at least as much as I could.

    Wrong!

    Chemotherapy is a wild, crazy wave, and my job was to ride the crest of it until it broke.  Certainly I wanted to protect my healthy cells, but I wanted those chemicals to knock the %*@!! out of the cancer that was threatening my life.  It was a battle for control of my body.  It was a game of chicken between those purple ewoks and wookies and the angry little bald man.  My body was the stage for this drama.  Never mind balance, that didn’t apply here!

    I understood that uninterrupted treatment was the key to my survival.  By the fourth infusion, I finally understood that to stay on that wave I had to be as comfortable as possible.  Steroids with the infusion, ativan at night.  Pain killers, anti nausea medicine, laxatives, stool softeners, all my normal bodily functions had to be slapped around to keep me on that wave.  I had a vicious cancer, and one delayed treatment for whatever reason would give it a chance to bounce back.

    When I finally understood that this was the way of it, my strategy became very clear.  Stay on the crest of that wave, don’t fall off, support my body under the onslaught, and let every ounce of energy I had be harnessed to assist the treatment.

    The first big breakthrough was, pain and discomfort leads to stress, which weakens the body more.  By the fourth infusion I was taking all the meds they gave me, at the first hint that I might need them.  The more comfortable I was, the more my body could use the energy I had to fight the beast.

    I conserved my energy for the same reason.  I did things I loved, like walking, improv, reading, puttering outside.  Things that were an energy drain I declined, and people who were toxic to me I kept out of my space, sometimes with help from others.

    I said yes constantly, as I have discussed in another post.  When people wanted to pray, bring food, take care of my children, or tidy my home, I welcomed it all.  I also said no, just as consistently, to anything that would use my precious, limited energy for something that was not important to me.  Saying yes opened my heart.  Saying no taught me to trust myself.

    I used complementary therapies to minimize side effects, and to protect my healthy cells as much as I could.  I used imagery to protect my heart, to watch the tumors shrink, to build white blood cells and hemoglobin.  I never had to miss a treatment because of low blood counts.

    Dr. Brown told me to “eat what looks good to you” and I did that.  I also developed my once a day nutrition shake to make sure all the bases were covered.

    I took advantage of every resource.  My colleagues gave me massage weekly (I remain so grateful for this!), I received acupuncture, and I had a Healing Partner who provided Healing Touch for me every week for 6 months.

    I wanted to be sure I was really showing up for all this.  I wanted my whole being to know that I was engaged in my life, that I was passionate about it.  I took advantage of the counseling that was available at Healing with Hope.  I blogged like mad at Caringbridge, and celebrated life.  I painted my room purple.

    Do you have to do all this to weather the chemo storm?

    No, not at all.  Do it the way you do it.  Just keep three things in mind, if they seem good to you.

    1. Use all the medications they give you to be comfortable.  This is not the time to be stoic!  A comfortable body heals better and faster.

    2.  Do the things you really love with the energy you have.  That way you actually get some.

    3.  Let people help.  It blesses them just as much as it blesses you, if not even more.

    If this is you right now, know that my thoughts are with you, and you will get through it!

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