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    Susan, your passing brings such deep sorrow and so much gratitude for your life.

    I myself am speechless, so let others more articulate on the web tell the story.

    The world already feels more hollow without you in it, and a better place because you were here.

    http://www.care2.com/causes/susan-niebur-stargazer-fighter-and-friend.html

    toddler planet

    The Washington Post

    The WhyMommy Love Fest

    Dr. Susan Niebur

    Mothers with Cancer

    communities/the washington times

    I can say nothing to add to these stories, except that I was blessed to sit at “the blogger’s table” with her last may in D.C., and got to hug her. We knew each other through our blogs and our shared diagnosis. We traded comments and encouragement.

    She made an enormous difference in my life, and in the lives of so many, across so many paths: scientist, mother, IBC activist, advocate, friend. She was an extraordinary woman, taken from this world too soon, before she was even forty.

    Tonight I cry. I have made space for that this week. The world must stop for a time.

    I honestly love happy racket.

    Right now my heart-daughter and grandbaby are asleep downstairs, my daughter is on my bed harassing me instead of making the coffee I want, but she will eventually…

    My son’s best friend, my extra kid, poked his rascally head in my door this morning to wish me happy birthday. We’re all tired and silly, because last night was opening night of “Annie Warbucks”. Tom plays the stuffy butler, Miss Peach a rascally orphan, HD (heart daughter) helped with the stage crew, and the baby (“Bubbeeee…”)kept me company as I herded children (as a chaperone) backstage. It was a little odd not being on the stage, but I have enjoyed the long quiet afternoons when Tom and Miss Peach were at rehearsal. Tom and Peach are in the Big Apple cast, so they have two more shows to shine in their big parts.

    Today I am taking the day off, because it has always been my habit on my birthday to take some time for reflection. The last four birthdays this has been especially so. I am always so overwhelmed with gratitude for another year. I am keenly aware of how fortunate I am. This awareness is bittersweet today, because this last week I lost another IBC blogsister, Ashley Warrior Mom. Her IBC battle lasted two years. Two other blogsisters are fighting like hell. I know that each day I get to spend here on this delicious planet is a gift, and each year I get to have a birthday I think about how to make the most of the year coming.

    One of the little things that makes me happy is that I have never had a bald birthday. I know that may sound like a little thing, but somehow it makes me feel like I got away with something. For my 45th birthday I had hair, and was blissfully ignorant of the thief that had snuck into my house and was preparing to wreak havoc. By the time my 46th birthday rolled around, my hair was back, thick and wavy, I was feeling much better, the herceptin was tolerable and I was NED. I had hope, and I could see a future. I guess each birthday that passes now is anchored in to that triumphant time.

    What’s ahead? Enjoying my children, more time at Lucille Packard, more writing, perhaps more theater (when another villain part comes up for a soprano I’m all over it), gratitude, more advocacy, scrapping for the end of breast cancer by 2020. My beautiful daughter is twelve. I want her and her beautiful friends to grow up in a world without the fear of breast cancer.

    Oooh, Bubbee is up. Time to be Grandmama…

    I wonder sometimes where I’d be today if I hadn’t faced the beast.

    Would I still be as stressed as I was? I don’t believe that everyone has a story like mine, and I do know that some cancers appear randomly, without any precipitating event. And, some of us were a breakdown ready to happen.

    I know that for myself, facing cancer was a major, major catalyst and as I result I changed everything. What was working, I did more of. What wasn’t, I got rid of. Things I loved that I hadn’t been doing became the things I did first.

    This weekend was about writing! I wrote an essay for a contest and sent it off. I had been procrastinating about it, even though I knew I would love to do it. I finally sat down to write and set my timer, telling myself that I would just scribble for 15 minutes and that would get me started. I ended up writing an essay that made me weep, one that I feel very good about. I don’t have any grand delusions that I will win (I’m sure there are 1000′s who sent an essay) but one way or another I’ll publish it! Alas, not now.

    The other deadline I had was a provisional assignment for Yahoo. I applied to be a Featured Contributor. Before I had cancer, I wouldn’t have even applied. I would have just assumed that I didn’t have the expertise or the clout to write about Alternative Medicine, which is the category I applied for.

    The new me said, Hey, what have I got to lose? If this is for me, not doing it is wasting time! I applied and forgot about it.

    Four days later I got a provisional assignment with a four day deadline. Ace the assignment and I’m in. I ace’d it. If you want to take a look, here it is:

    My article on herbs and chemotherapy

    I was delighted with what they asked me to do, right up my alley! I got paid to write. That just rocks.

    My freelance writing career has begun. I don’t know where it will go, and that’s half the fun. After I had cancer I began redesigning my life, making it up as I went along.

    Now I am a massage therapist/teacher/thespian/writer/artist/wife and mom. I really don’t know what to say when people ask,

    “so, what do you do Elizabeth?”

    Oh yeah, and blogger. Thanks for reading!

    There’s still time to catch the show if you’re in the Bay Area! This coming weekend is the end. I’ve had a great time, and I’m glad to get my weekends and Monday nights back. All the same, I am going to enjoy every moment on stage and every blissful note I get to sing for the next four performances.

    Tom will be The Wiz one more time, on Saturday. Check out the Bay Area e.T.c. website if you want to see some really fun theater and a lot of really adorable kids!

    Tech week was insane, as it always is. Nine days in a row in the theater with late nights and life as usual. The house becomes a wreck, everybody gets cranky, and we hear songs in our heads in the middle of the night. I used to worry about the stress, the lack of sleep, forgetting my vitamins and my vegetables. Now I have come to the conclusion that having my spirit hum is every bit as good for me as some yoga or a green drink! When I sing, every cell in my body is joyful. That just has to be good for a person!

    So, on with the show, and back to normal on Monday.

    I saw my oncologist a couple of weeks ago and I feel very reassured. No causes for concern whatsoever.

    And the request on the right? I am going to D.C., and I am so stoked! My scholarship covers registration and lodging, but not meals and travel. So far I have received donations to cover half my airline ticket, for which I am so grateful! I didn’t have it to spend, but I spent it anyway because I have to go! My ticket is purchased on faith, and I still have to cover meals and other expenses. If 60 people donate $10.00 I’ll be there. Or, 120 people at $5.00. Thank you from the bottom of my heart to those who already have helped! I will report in depth on what I learn, and you can bet I’m going to use every bit of it.

    Now to organize my bizillion costumes for tomorrow!

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    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.

    Here is the post that started the Army of Lego Princesses

    The Army of Strong, Brave Princess is growing. Go to Toddler Planet and follow the link to Annie’s blog, and believe that this world is full of good people!

    I ran into a friend today, one of my theater buddies. Our two daughters talked and played games on our cell phones while we had a good visit, a hard one too. She is terribly worried about a dear friend of hers, another mother fighting cancer. Felicia shared her ambition to involve her school in a massive fundraising effort for cancer research.

    We had stopped into a store earlier in the afternoon that is run by a breast cancer survivor. She’s got this cute little shop on B street in downtown San Mateo, dedicated to making a difference. You can find out more about her at www.livingpeacefullystore.com. I found out that Barb was a cancer survivor when I asked her about the “Cancer Sucks” bear she had on display. I used to wear a badge on my bucket hat that said the same thing! It made me smile.

    Felly and I got matching little heart necklaces with a peace sign inside. Hers is pink, mine is purple. After we visited the store, we got some frozen yogurt and she told me what she wants to do. She is envisioning car washes, bake sales, maybe a musical theater production, all to raise money for cancer research. I think she was inspired because the lady who runs the store has a son in Felicia’s P.E. class.

    How many of our children have been touched? How many want to do something, and don’t know who the others are in their community that also want to do something? I’m looking forward to seeing what happens.

    It’s a mighty good world, with good folks in it. Yes, there is all kinds of ugliness, violence, want, disease. And, joining together to do something about these things is such a deep satisfaction, such exhilaration, such hope. Today instead of being paranoid about my aches and pains (I have a spot at the front of my right hip that is bothering me, stretching like a nut so I can make it go away and stop worrying) I can focus on what I am able to do, and remind myself to take care of myself so I can keep doing it.

    Susan, what you inspire in others inspires me. The disease you face stinks and what your courage in the face of it draws from people is simply amazing and wonderful. Now that little lego princess is on my desk too, every time I turn on my computer.

    Rock on Princess!

    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.

    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:

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