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    This last weekend was amazing, not just for what I learned but who I learned it with. There is really so much to be done to change public policy and perception about breast cancer!
    Like so many newly diagnosed, when I first learned I had breast cancer I thought that all I had to do was take a deep breath, face my fear and get on with it. I had been affected by awareness blitz of the last decade that has inadvertently convinced a generation of women that mammograms and education had gotten the upper hand over breast cancer. To be told at diagnosis that my disease was serious (and read between the lines that it could very well kill me) was not what I expected.
    This weekend I learned why breast cancer is such a ferocious, still underestimated foe. I learned how breast cancer outsmarts treatment, and what is being done to outsmart breast cancer. I am heartened by how much we have learned, and frustrated by how far we still have to go.
    The biggest takeaway of all is that the divisions that exist between breast cancer survivors and advocates really don’t need to be there and are counterproductive. Breast cancer is a sneaky beast. It puts out little migrating cells very early in the process, which means even early stages of disease are at risk for recurrence. In my mind, it doesn’t matter if we are NED, metastatic, or haven been treated for “just” DCIS. It’s all breast cancer, and regardless of the diagnosis we join the prevalence statistics. That’s right. In evaluating the prevalence of disease in the U.S., I count as someone with breast cancer, even though at the moment I am NED. “Cure” is actually a misnomer when it comes to us. No one knows if we’re really cured once we’ve been diagnosed.
    So what about Deadline 2020? What does “cure” mean?
    It means that:

    1. We stop being diagnosed, as in we prevent it from ever happening in the first place.
    2. Women whose cancer has metastasized have weapons in the arsenal that will not only prolong their lives, but eradicate their disease for good and go on to live normal lives.

    We are a long, long way from these. I believe that if we focus, we can apply this focus in the same way other major milestones have been achieved, we will achieve this one, but not without a lot of people working together.

    My buddy Donna (what a thrill it was to finally meet my cyberbuddy!) and I were noticing that it was an extraordinary sort of woman who attends these things, who wants to be an advocate. Are all people who get this stinky disease amazing people? Is the disease that smart?

    No. It is that some of us respond by wanting to do something about it. The rabble rousers, action takers, loudmouths, women who have had enough…it’s the “uppity” ones who come to join the fight for the deadline. We are the NED, the Metastatic, the DCIS, the supporters, the educators, the researchers, all represented in that micro community this weekend. We can do it if we work together.

    Contrary to what we may think divides us, we are all in the same boat. We have all been affected by breast cancer and we’ve all had enough.

    We lost one on the list today. One of my IBC sisters could not stop the relentless forward march of this stinkin’ lousy disease. No matter what was thrown at the beast, it just kept on keepin’ on until it’s host could fight no more. Stupid parasite.

    My last blog on Everyday Health generated comments from two survivors, one of 12 years, and one of five years. The five year survivor had story similar to what I posted yesterday. Still here, backwards treatment and all!

    We need to know you’re out there, survivors!

    Here’s the post over there at Everyday Health.

    I had a great day today. I gave a massage, did theater with some kids, and then went to the childrens hospital. Now my husband and my son are bugging me to get off the computer and go watch “V” with them. Life is good.

    Everybody deserved a life that makes her as happy as mine does me. Let’s make it happen by 2020.

    I was about business as usual today, having to do with my offspring. Discussing what they had experienced, I shared that I had faced IBC in 2007.

    The woman I was talking to said, “I had that”. Whoa! She was sitting across from me behind a desk, looking just as fine as you please, had it in 1995. She didn’t want me to take her picture or make a fuss. She was not into a fuss thanks, got stuff to do.

    What’s amazing about her story is that she’s alive, and the doctors who treated her botched it one way after another. She was diagnosed Stage IIIC IBC not before, but AFTER 2 botched surgeries where they took the wrong part of the breast! The third surgery yielded the proper diagnosis, MRM, only one breast, not bilateral because “we don’t do that”. Lots of dreadful chemo after (yes, after!) the surgery, which did not include herceptin of course because even though her cancer was Her2+ herceptin did not exist. Then, she did not get radiation either!

    Yikes! And there she is, cool as a cucumber, telling me about it!

    Go figure. Sometimes the best care in the world does not do what we want it to, sometimes the worst in the world doesn’t stop us from conquering. The happy medium is that these days, when women and doctors know more than they have ever before, and patients are full on players in their own story, more and more of us are going to beat it and get on with it, and decide for ourselves whether “making a fuss” is useful or not.

    So much for statistics, prognosis, or any other attempt to predict the outcome of anything!

    I guess what this reinforces for me is that always, always, anything is possible.

    I continue to make a big fuss, to help keep things moving forward in the right direction as much as I can, for all of those who can’t.

    My 15 year IBC survivor friend is quietly doing a whole world of good where she is. She is impacting the next generation, and I’m so glad that she’s still around, doing what she’s doing. She is someone I will run into frequently in my everyday life. Now every time I see her I have another reason to smile, and smile big.

    I am continually noodling around, looking for other sites, other survivor bloggers, other IBC warriors, other resources. I love it that I can spend hours looking, and find tons of stuff, and read other people’s stories. It’s hard, too. So many of these stories frighten and inspire me.

    I want to send out a massive war cry, and tell every one of the women whose blogs I have discovered that I am scrapping. I will continue to scrap, as long as I have breath, as long as I have the health that I never, ever take for granted any more.

    For the women I haven’t met, who are dealing with metastatic disease, who are fighting to stay alive, I was to shout from every high place that that we who can fight for a cure are determined, and we’re not giving up.

    There was just too much lousy bad news this week! Too much!

    I can also go rummaging around and find inspiration and good news, people who survive all kinds of cancer, people who continue to make the world a better place advocating, telling their story, looking after others who are fighting cancer and others who will in the future.

    I found a link today, the Annie Appleseed Project. It’s a website developed by a breast cancer survivor, and it is all about complementary and alternative therapies. I believe deeply that using CAM to support my body during the aggressive treatments I had was very, very helpful. I understood that the goal was for me to withstand the treatments, and taking a comprehensive approach helped me to do that. I’ve added the link to Annie Appleseed under “Resources”.

    Another great thing about the internet is that none of us are alone. I was stunned and delighted to discover that my rant over at Everyday Health got a huge response, and a man from Germany wrote to tell me that his wife is a 12 year IBC survivor.

    That makes my day!

    We live during exciting times. The world is getting smaller. If we want to badly enough, cancer can become a thing of the past, like diptheria or other diseases we don’t even remember the names of.

    I for one want it really, really badly, for all those women I have never met, who are my sisters in the IBC family we never asked to be a part of.

    I just got news of a four day conference this spring in Washington D.C. and I want to go. I asked my husband if they could do without me for a week. He told me no, but they would have to, because I’ve got to go! I just realized that I can’t because “The Wiz” is running right at that time, and I don’t have a double.

    That’s ok, there will be more. And I am going.

    This is the name of a kid show that my daughter watches. Once again I am up when I it would be better for me to be in bed. I just have this Type A streak that will never reform! I’m not upset about it. I don’t mind being a Type A if it is about something that makes me feel alive and passionate, something important.

    What made me think of “random” is the phenomenon of survivor’s guilt. That’s been a hot topic on one of my discussion groups, and it is something I struggle with sometimes. When I read a story like the one I just wrote about for instance. Some women go through chemotherapy and it is not effective, and they try something else, and nothing works. For some it works well, for some marginally. I have a new friend I’ve never met, and we both posted to another about the fear of recurrence that plagues all of us. Right out of treatment, we all wonder if we’ve really dodged the bullet. The fact is there’s no knowing, and predictors don’t always tell the story. My friend Kelly, whose cancer presented in a much more complicated way and responded to treatment poorly in the beginning, is still here, as am I. We are, as we have discovered, part of the “Class of 2007″. We are discovering that there are a lot of us! Quite a few of us it seems have busted the statistics.

    Now, what about the early stage cancer, the one where treatment went smoothly, margins were clean, plenty of options, and the nasty beast comes back and wreaks havoc? It’s just not fair! When I read about a young mother who lost her battle after a 14 month fight, I stand in amazement and gratitude. I don’t feel guilty most of the time, but I feel unbelievably blessed.

    What cancer does is just so random. It is unpredictable, capricious, unfair. Part of living after and surviving well is learning to live with uncertainty!

    What I know is that since I am still here, it is my gift and privilege to continue to advocate on behalf of those who cannot, and to do my part for those who will be diagnosed.

    It’s not guilt anymore, exactly. It’s a sacred assignment that is mine because I am alive. Since I am alive, and have this assignment, it is imperative that I safeguard my future and present as much as I can.

    Now, to bed, because my body is telling me it wants rest.
    I’m going to be nice to my friend and take her to bed! Follow the link to “My Body, My Friend” at Everyday Health.

    Today was such a good day.

    In the back of my mind, when I was very sick from the treatments that I was banking on to save my life, I had the thought that at least I would better understand the patients I work with after I get well! Maybe I take this silver lining thing just a bit too far, but it works for me. I have heard more than once that people who find meaning in their illness tend to do better in the long run. I have quite a story I made up about mine, and just because I may have made it up doesn’t mean it isn’t true!

    Years ago, I learned a principle from shamans:
    “Effectiveness is a measure of truth”. This is a fancy way of saying it’s true if it works!

    The meaning that I attached to my cancer was that I was going deeper into my own healing journey so that I could be of greater help and service to others. My cancer gave me the opportunity to clarify what is important to me, and my ability to tolerate more suffering than I ever thought I could taught me that I’m stronger than I ever thought I was.

    I learned that expressing my creativity and seeking and making beauty in this world is good for my health, and the love of my friends and family taught me what a difference love and care makes to all of us.

    Today I was blessed to walk into a room where an adolescent girl was moaning in distress, and hyperventilating because she was so scared. I was blessed to walk in there because I understood. After I spent a half hour with her she was calm and breathing normally. Her mother appreciated it so much! Every one of my massage therapist colleagues could have made her feel better. Being the one to do it today was a blessing to me because understanding her fear and her suffering made the experience richer for me. I appreciated perhaps more deeply what an impact I had been able to make.

    I am blathering. How to express the inexpressible? How to give words to the satisfaction of giving comfort after having needed comfort deeply? Now I understand better what my friends received from tending to me, while I feel also that I am deeply in their debt.

    I do remember what a ray of hope it was to have someone speak to me who had been through the same ordeal I was facing. Remembering this, I shared with a fuzzy headed young man recovering from a stem cell transplant that I had faced cancer. He was wildly curious about it. His mother was too. She was especially impressed by the thick knot of hair that I had in a gazillion clips to keep it out of my way.

    I keep my hair long now, and it’s still growing. I do this because every inch is more distance from my diagnosis, and is representative of the length of my survival. It also has meaning attached to it, given by me. I had a vision once, when my dear friend Deborah was doing her healing work with me, of myself strong, sinewy, older, more wrinkled, with long brownish hair streaked with gray. I decided that this was prophetic. I take comfort in this vision as my hair grows. I am going to be an old, strong lady with lots of hair, full of gray ones that I earned. At least I choose to believe this, and act as if.

    As Jean says, acting as if I have control while accepting that I do not.

    One thing I do have control of is the story I embrace as my story, and the meaning I attach to it.

    Today my story is one of blessings and great healing.

    And the day’s end? Painting my daughter’s nails bright pink. Life is grand!

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    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!

    We all know we are supposed to exercise. I was doing well until the weather changed and my walking buddy started having trouble with her ankle. Every day I haven’t exercised has made me anxious! I know I’m supposed to be doing it. I have a gazillion excuses…

    It’s yucky outside. I don’t feel like it. I have so much to do, I’ll do it later, no, I’m tired, it’s dark, whine whine. Thanks to my dear ol’ mom, I have no more excuses!

    Seriously, exercise is really, really important. Study after study shows the benefit of exercise, both as prevention and to reduce the risk of recurrence. It’s also good for just about everything else. I’ve been doing a lot of research on the internet lately. Body mass index and survival are inversely related. The higher the BMI, the poorer prognosis statistically. Exercise also impacts insulin resistance, a factor that is becoming recognized as a contributor to the development of cancer. I have a love/hate relationship with exercise, as I’m sure a lot of us do.

    I do great for awhile, and my body, mind and spirit hum. Then something gets me off track, and the all or nothing gal that I am not only drops the ball, I roll it down the hill behind me!

    So, this technological device is worth its weight in gold to my way of thinking. I can choose from a number of clever games that are just that, games! I’m being a kid, throwing snowballs at my family or being chased by a dog on my bicycle, and I’m getting exercise.

    Not only me, but my children as well! My son is very competitive, and the thought of mom doing better than he does is intolerable, so he is now effectively weaned from passive video games in favor of exercise.

    Something else I am noticing, which seems an obvious metaphor. My husband, who is calm to the point of being aggravating to his high-strung wife and step kids, leaves us in the dust when it comes to balance games. Now, this is my focus. Balance! I will be a penguin on an iceberg, cruise down the rapids in a bubble, dodge panda bears and shoes with my head, and any number of silly games to achieve balance first. I feel calmer at the end of the day when I’ve been doing that.

    My journey into this world of advocacy and awareness has been startling, terrifying, and exhilarating. During my entire journey through cancer treatment I really managed to not know what kind of trouble I was in. I didn’t want to see the scary parts, I just wanted to plow on ahead in warrior mode, pass the finish line and be done with it. I blogged all the way through, and then when it was all over I got depressed.

    Then, I got scared. So many of my blogosphere friends dealing with metastatic disease, so many blogs gone because another woman lost her battle. Terrifying and humbling, this. I alternate between terror and survivor’s guilt. Today where I stand is committed and awake, painful as that has been to get to. I have combed the statistics. I have pored through women’s stories. I have faced the impact of my current choices, and improved them. Life is a gift I cannot take for granted, and I need to keep on fighting for those who can’t anymore, and for those who are gone.

    What am I fighting for? Awareness, a cure, and a future without breast cancer.

    And that crazy Wii? Thanks so much Mom. I’m not facing chemicals anymore, I’m creating my future without cancer to the best of my ability, God willing, and you’re still helping.

    I never could do it without you!

    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.

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