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    Today I had to rant.

    I have a cold, which is no fun. Whine whine. Then I checked my e-mail and got a little overwhelmed by the IBC world, and quite pissed off. So I ranted over there at Everyday Health! I hope the editors don’t get upset at me.

    And what’s cool? Tom, Felicia and I are going to be in the Wiz together. Tom gets to be The Wiz, lucky guy. And alas for me, there are very few great soprano villains, so I defer to my fantastic buttery voiced friends Tina and Harini, and content myself with a frumpy dress, and apron, and a ballad. Aunty Em, here I come.

    Check out some ranting over here, and I apologize in advance if you think Suzanne Sommers is smart…

    I thought I was done for this year, but no!

    I was inspired by a post by the woman who has influenced me profoundly in the brief time I’ve been reading her blog. She wrote a letter of thanks to Lymphediva’s, for making it cool to wear a compression sleeve. I concur, I love my lymphediva sleeves! I am convinced that having a fashion statement to wear on my arm actually means that I wear it, and so my lymphedema is very well controlled. I appreciated that she took the time to express what a difference this product has made in her life.

    So, how to express my appreciation to someone I’ve never met? All the same, we share a common trial and purpose, and she has shown me the way with grace and dedication.

    *****

    Susan,

    Your story and your commitment are an inspiration to me. What inspires me even more than these is how deeply you live these commitments, choices that you make for the betterment of our world. Your dedication to your children at all times reminds me to appreciate mine, the time I had with them before cancer, and every precious moment I have with them now. Your desire to be an advocate goes further than just your own words, you have engaged others to carry your experience further that other lives can be saved.

    I ask people about IBC and the majority know nothing about it. You are one woman sending ripples ever outward, inspiring, sharing, pushing, encouraging, struggling. All of your work, impassioned as it is, will not be enough to bring the awareness and resources for IBC that are urgently needed. Thanks to your powerful forward motion in the face of numerous setbacks, I know that each one of us that works to stop IBC from taking the lives of women will make a difference.

    I have pored over your blog posts to learn your history with IBC, and I am both amazed and terrified. You have weathered horrific trials with your integrity, purpose, and love for God and your fellow human stronger than ever.

    In a just universe, you would have a reprieve after all that you have faced,to move forward after IBC and leave it behind. In a just universe, none of us would have to face it even once. You faced it a second time and now you are still moving forward. I wish with all my heart, and am praying, that the Taxol that took it’s toll on you has done it’s job, that your future and amazing legacy will be secured, and your beautiful boys can be blessed by their mommy for decades to come. You have helped me to be less afraid.

    You are a scientist, an advocate, a wife, a mommy, a spiritual seeker and a powerful woman, and you manage to do and be all of this with cancer fighting you for your life. Bless you Susan. You have made a profound impact on my life, my survivorship, and my future.

    Wishing you peace, happiness, and health in the coming year,
    with great respect,

    Elizabeth,
    IBC sister and aspiring IBC awareness advocate

    *****

    Happy New Year!


    Read Susan’s blog at Toddler Planet

    So good to wind this one down. It was a good year.

    This was the year I moved forward out of cancer land, getting stronger, putting the experience behind me while looking forward to doing something good. I have heard it can take a good three years to start feeling “normal” again, whatever that is. Normal before was a woman 45 years young, now normal is middle age. It’s ok, it feels like at least I’m moving into an energetic middle age!

    While my personal journey is moving along, I continue to be amazed at how many people still have not heard of Inflammatory Breast Cancer. I’ve been talking to a lot of strangers lately, and not a single one knew what it was. The only one who had even heard of it was breast cancer survivor I met having tea with my girl. She had just had a recurrence 16 years later, and she was 80(-ish??) years young. I look around me and I see women everywhere getting the word out, and yet so few still know!

    And, I continue to see the cancer beast at work in the lives of children, when I go to work. I hate it. One of my patients today was a young woman with leukemia. I just read “The Emperor of All Maladies”, a fascinating book about the history of cancer and cancer treatment. I have a new understanding of this cancer, as well as a deep appreciation for the drug that only came into use just in time for me and my contemporaries. I am acutely aware that without the persistent efforts and numerous setbacks of many, many dedicated people, I would not be alive today. This young woman will likely recover, but she’ll have to fight, and fight hard. Research is what it takes, lots and lots, persist, test, develop, learn, while in the meantime so many are just trying to stay on the planet until the new breakthrough that could cure them. The work is never done and I hope 2011 shows me more clearly how I can do my part.

    Three years ago at this time I was just coming pack from an exhausting ordeal, breathing a sigh of relief while keeping my fingers crossed, knowing I would be challenged to stay in present time for the next three years, as I faced the major hazard period for IBC.

    Tonight, as I write, I am taking inventory of my body and it’s odd complaints and it’s aches and pains, hoping that I can truly say that I remain NED. February will be four years.

    I am not quite such a scatterbrain I think. Chemo-brain is giving way to just being middle aged. Not so bad. My energy is slowly but surely coming back. It has taken a long time! I was beginning to think it never would. I have learned that I can’t neglect self care, or I pay more dearly than I did before.

    I hope 2011 brings in more increase, in strength of mind and body, and in focus. I feel so unbelievably fortunate to be here for another flip of the calendar, another fresh new year to dream up.

    Another year older, another year I can thank God for.

    I cannot let the year close without appreciating the amazing women I have met as this year began it’s descent, when I picked up the proverbial cyberpen and began writing again. Susan, Donna, Valerie, Joanna, Julie and Jan, Vicki, and so many more who have touched me by their courage, grace, and activism. I am humbled to be in your company.

    May 2011 bring peace, health, and serendipitous blessings!

    Someone on my IBC support list brought this amazing story to our attention.  Megan Waldbridge Nelson had seen an e-mail about IBC, which had been circulating on the internet.  It had been years ago, but she remembered, and advocated for herself.  The knowledge that she had in her mental rolodex, and her decision to act on that knowledge was lifesaving.

    This morning I spoke about IBC to a group of nursing students at my local coffee shop.  I saw a woman in scrubs, wearing a pink ribbon.  I saw my opportunity!  I thanked her for wearing the ribbon, and asked her if she had ever heard of Inflammatory Breast Cancer.  She had not, and her classmates had not either, although they had already learned about breast cancer.

    Since I became part of the internet IBC community, it is clear to me that a lot of us are committed to getting the word out, but still the majority of women I speak with have no idea about Inflammatory Breast Cancer.  Nursing students didn’t even know!  Every one of us who can speak about it are needed voices.  Megan is my hero today because she used the opportunity to make her story public, so other women can save their own lives as she has done.

    You can see her story by clicking on the link:

    http://www.9news.com/rss/article.aspx?storyid=168708

    I’m having a hard time getting the link to work!  If you are too, just go to www.9news.com and search Megan Waldman.

    For women facing IBC, the support list is a hugely important and valuable resource:

    http://www.ibcsupport.org/

    for more information and the most current research on IBC:

    ibcresearch.org

    I am alive today because of research (which gave us herceptin, relatively new when I was diagnosed), doctors who were knowledgeable about IBC, and because I took care of myself.  More and more women are speaking up to make sure that women and men know to take care of themselves.  This is not just true of IBC, but of other cancers as well.  The work is never done, but we make progress, and keep on keeping on.

    Thanks Megan.  We’ll be watching you!

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    Today one breast cancer death is in the spotlight.  One high profile woman who advocated for breast cancer awareness, and fought for health care reform, has died before her time.

    Elizabeth Edwards was aware that she had resources that many women do not have.  She was deeply concerned for women who are uninsured, poor and under served by our health care system.  Each one of us who is currently dealing with breast cancer or who has had it, can feel the blow of one more who has left before it was time.

    Today I am mindful of the ones who I have come to love that I never met.  Today I mourn for Andrea, Jo, Susan, Modmom, J, Julia, Katie, Jen, Lisa, Manda, Amber, Renee, Sue, RivkA, others whose names I do not know and for Marianne, who I knew personally.  All of these women left before they were ready.  They were pathfinders.  Their journeys, and their passing, never leaves my awareness as so many of us work to get the word out about screening, diagnosis, and the research that will create a future without breast cancer.

    I am in appreciating of the women who are still here, doing what they can, working to help women get diagnosed, cope with treatment, and survive.  I am grateful to my friend Valerie, an IBC survivor who continues to push for more and better research about IBC.  Vicki Tashman, founder of PinkLink, is providing resources for a healthy survivorship and support for the newly diagnosed. There are many others.  I stumble on them during my meanderings on the webs.  They all inspire me.

    My fellow IBC bloggers, many of whom are battling metastatic disease, are relentlessly getting the word out, raising awareness, and coping with cancer with amazing grace and courage.

    I am sorrowful today, and I am committed.  I am part of the Army of Women, literally and figuratively.  Please join us if you have not.  I can believe in a world where my daughter doesn’t have to be a warrior, and needn’t grieve for the wounded and the fallen.

    Goodbye, Elizabeth.  We will miss you.

    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.

    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.

     

    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.

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