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    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.

    Very few of us cancer survivors would be here at all without clinical trials. Every new drug that emerges as a possible weapon in the battle for our bodies is an unknown in the beginning. Before it even gets tried on people, it has to be determined safe. How do we find out the answers? Human beings. Pioneers, risk takers, people for whom the options have become fewer and fewer.

    One of the first women to take herceptin was at death’s door. She was invited to be part of that study but declined, having had enough of treatment misery and thinking she had accepted her fate. She was invited again, after tests confirmed that her cancer was overexpressing the Her2 protein to a very large extent. That woman is still cancer free, alive and well in a small town in Washington State. She braved an unknown chemical, with unknown side effects or outcome, in the hope for another chance to beat cancer. Because of her, and the other women in that study, I and many other women with Her2+ cancer cell types are alive. We are perhaps 25% of breast cancers, and our prognosis used to be grim indeed. Herceptin, and the brave women who were human guinea pigs, changed all that.

    The prognosis for Inflammatory Breast Cancer is statistically still grim. However, today’s statistics don’t include a huge number of us treated in recent years, after major advances have been made in treating our disease, advances that were tested before they were put into practice. My treatment protocol, with herceptin used with adjuvant chemotherapy, was approved for that use only a mere three months before I was diagnosed. I am so grateful that my doc was a trailblazer! She predicted that dose-dense chemotherapy would become standard for aggressive, locally advanced cancers, and I am seeing that come to pass.

    This is on my mind because my friend Susan begins a clinical trial today for a new combination of chemicals, in the hopes of knocking the —- out of this latest, fourth manifestation of cancer, now in her lungs. I can’t imagine the fear and the hope she must be experiencing today.

    I remember my first chemotherapy infusion. I was scared to death. I didn’t know what these chemicals would do to me, or even if they would work. By the fourth infusion I was not afraid, because I knew about Adriamycin and Cytoxan. What they did was nasty, but no surprises.

    The first Taxol infusion was scarier, because of all the disclaimers and warnings I had to sign! When I didn’t turn green or blow up that was a relief. Feeling like I’d been hit by a truck and then flattened by it was nasty, but I knew that it would ease off over time. It also helped that I could see that the mack truck I’d been hit with was knocking down my cancer.

    I also knew that trial and error had evolved these treatments to the point of the least danger for the most benefit. This was available to me because of the brave women who had risked before.

    Today, I am hoping that Susan will find the least suffering for the most benefit. I am praying that this battle will end the war and see her triumphantly resuming her life, tending to her sweet family and doing what she loves.

    And, asking once again for all who can to join the Army of Women! When we know what causes breast cancer, we can reduce the suffering on the other end.

    I just read a story about the youngest breast cancer survivor, a little three year old girl. She is now four, and already and activist!

    Enough is enough!

    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.

    It happens all the time. I follow a link, to another link, and another, and get drawn in to a woman’s story. I laugh and cry with her until the posts end. Sometimes I know what happens, sometimes I don’t. So many women with IBC who I will never meet, who have touched me deeply.

    The story I was reading at this late hour was of a woman diagnosed with Stage IIIB triple negative IBC. Her treatments started in May of 2009. She was likely set up for a protocol similar to mine. In December of 2009 she was finally having surgery. Her first chemotherapies were unsuccessful. The tumor grew. It hurt. The chemo made her very sick. I was so sad.

    I found some good news later, a good path report after surgery. After 2009 I did not find any more entries.

    Did she get tired of blogging, or did she leave us? I’ll never know.
    She said in one post that she had taken a break from her blog because cancer was becoming what defined her life, and she wanted to remember that she was herself, not cancer.

    I pray tonight that her silence is the silence of one who has picked up her life where she left off. I hope….

    I picked up this image from one of her entries. I’ll call her IBC sister in my heart and wish her well. I hope she won.

     

    Like the conscience in old cartoons, My Own Death sits on my shoulder, reminding me to pay attention and treasure my life.

    I was noodling around this evening as I often do, looking for cool juicy stuff on the internet, and my meanderings brought me to an article written by a Palliative Care nurse. She writes about the common regrets she hears from the dying. I was deeply moved by the article, because what happened to me is that I got a second chance, so every regret that she listed was a change I had the opportunity to make in my life.

    Everyone who faces life threatening illness and survives gets a second chance if they choose. I am so grateful that my second chance came while I was still young enough to have more years to enjoy my children, and to follow the passions that I had forgotten on the back burner for so many years.

    The little annoyances and aches and pains that make me afraid are the reminders of my commitment to myself. None of us knows how long we have. Am I doing what I want to be doing, what matters most to me with each day that I have?

    Susan said in her blog, “please don’t pity me. I have work to do”. I am certain that the passion she has for this work of the heart that she does will keep her alive. I feel deeply that my passions keep me well, and feeding them is a smart survival program.

    Today I joined my daughter and my husband for the audition workshop for “The Wiz”, the musical that Bay Area ETC is doing this spring. Part of me thinks I don’t have time, and that I have other important things to do. This article was a timely reminder that doing what I love is the most important thing I can do, and the fact that I get to do it with my sweet family makes it all the more ridiculous not to do it. So, this week I’ll be warming up the pipes, practicing my cackle and hoping the director can see my diabolical side!

    go here to be reminded.

    Well, here she is again fighting the beast.  Damn.

    My friend who I have not met, Susan, has learned that she is facing cancer a fourth time.  She is gearing up for yet another hard fight.  And what was she doing before she found out about this?  Advocating, of course.

    She has worked out a partnership with Lymphediva’s and Crickett’s Answer, a nonprofit in memory of Crickett who died of breast cancer.  For details about this, go to Toddler Planet and read Susan’s last two posts.  I could write about it, but I’d rather sozzle on Susan’s Story.

    Once again our Heroine is facing another Dragon, sent by the Gods to test her strength and her courage.  Each one develops another skill that she will need in order to do the work that her Spirit Guardians have sent her here to do.  She is tested again so that she can give even more hope when she has conquered.  She does not know that they are watching her every moment, and they are pleased and proud.

    Her struggle is catalytic to others who are tempted to do less than they can.

    Her latest diagnosis is an opportunity for God to do a Great Work and prove again that prayer works, and love conquers.

    She is the Great and Powerful Priestess facing the obstacles to the Four Directions, one challenge in each quarter, and this is the last gate to Victory.

    I love making up stories.  Susan’s latest post asks for support, but not pity.  I am not even tempted!  When I was fighting, a friend shared with me that another old friend had made the comment, “well, if anybody can do it, Eddie can!”   Eddie meant me by the way.  It’s along story…

    If anybody has the wherewithal to face this again, she does, and I’m sure it really pisses her off that she is doing it again.  It pisses me off too.  It’s time for her to get a break!

    So, what’s the story?

    What if the meaning in this story is the magnitude of one woman’s impact, and the impact of love on one woman?  Let’s show her.

    Please, think a good thought for my friend, send her prayers, send her love.  She has done so much for so many.

    When I was diagnosed, I made a very specific request to God.  I said,

    “Dear God, if I have ever done anything worthy, if I have ever made a positive contribution to someone’s life, earned any good karma, done a good deed, if there is any positive kickback that I have earned in this universe, please, PLEASE send it NOW!  This is when I need it”.

    I don’t know if I deserved it all, but I got back more than I ever expected.

    I hope Susan’s good karma is rushing now at her in a fantastic wave of grace.

    For more about what she’s been up to, check it out:

    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!

    This is a special time of year for me. Not just because it’s Christmas, but because somehow I managed to skip being sick at this time of year. The Christmas before my diagnosis was lovely, and then I was diagnosed in late February. By the time Christmas 2007 rolled around, I was sporting cool short Annie Lennox hair and feeling pretty good! I spent it in Seattle with my family, and I was high on life, grateful beyond words to be still around and not sick. My husband was a nice guy on the periphery of my world, and 2008 brought him right in. It was a wonderful time of joy and appreciation. Somehow that feeling is now linked permanently with Christmas, and each one since then has felt indescribably blessed.

    This Christmas is my third year after cancer, currently No Evidence of Disease (NED). As I am grateful and mindful of this, I am acutely aware of all the women I know who are still dealing with it. I am also acutely aware that this could change any time for me. Each day is a gift, and each Christmas of health and love is a priceless treasure.

    A woman on my support list who was dealing with a recurrence just had a clean scan for Christmas. Woo-Hoo! God is good.

    We just had our Christmas, because my daughter is with her dad now. So the madness occurred last night and this morning, and now all is calm (and the house is trashed!). It’s kind of nice to be in a quiet space while much of the rest of the world is still shopping madly!
    My husband, my son and I will go to bed early and be up before dawn to deliver meals to shut-ins tomorrow morning. We did this for Thanksgiving, and my husband got a call earlier this week asking for our help again, because they were terribly short handed. This surprised me! I guess folks don’t want to get up that early. Denny’s, here we come!

    I give thanks today for the light of hope and gratitude in my life. May your holidays be filled with every blessing!

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    I just posted my Everyday Health blog after losing an entire post to cyberspace. AAAAAARGH!

    I did this after taking my 13 year old son Christmas shopping. He hates shopping, but he liked it when I took him to dinner. Things are a bit tight for us, as they are for so many, but “the Bubbee” (their nephew, our grandbaby) is of course going to make out like a bandit.

    Drove up to Mill Valley to see Jean. Always feel plugged in to the Main Source after I see her. 3 hours total. It’s midnight, and I’m still busy, doing stuff, glad I can do it. I guess I’m slowly getting back to my old self again, even though I’m older and creakier. I’ve heard it can take up to three years. This is my third NED Christmas, one of many more I hope and have faith.

    Here’s a sweet picture to tweak your curiosity. I’ll tell you more of the story in another post! For now, let me introduce my wonderful mom and her friend Neville.

    Now, to get my happily pooped self to sleep!
    My son is watching videos of the Annoying Orange. Yes, it is annoying. So glad I’m going to bed.

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