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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.

    Many of us in the cancer blogosphere are uneasily waiting.

    We haven’t heard a peep from Susan Neibur of Toddler Planet. She was diagnosed with Inflammatory Breast Cancer in 2007, and her road has been far more difficult than mine. It may be coming to an end. I can’t bear the thought. Her last post was before the hospice people came, on January 22. I hope against hope, waiting to hear that she’s rallied, she’s back in her chair with her little boys cozying up and making her laugh.

    Despite getting knocked down by recurrences over and over, Susan has been a scrapper in the world of advocacy, what a dear friend of mine would call a She-ro. She’s my hero, and if she leaves the planet I’ll call her my angel. She’s been an inspiration to me for as long as I’ve had the privilege to know her, which hasn’t been long enough. I’m profoundly grateful that I got to meet her face to face in D.C. last year, and actually hug her.

    Sending hugs and prayers Susan, waiting with hope to hear that you’re all right.

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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.

    The day after tomorrow I will get on board a train and go to Seattle for another advocacy training. While the pink ribbon campaign plods along (the month is getting old, after all) and the hoopla continues, women put one foot in front of the other and plod forward, in advocacy or in treatment.

    The blogosphere has been busy lately. Fallen sisters, survivors speaking out against pinkwashing, daily breast cancer facts, metastatic breast cancer awareness day. Today two amazing warrior women are telling it like it is.

    Susan Nibur is a scientist, a mom, an advocate, an activist, and a simply wonderful human being. While she struggles with metastatic cancer, she has taken the time and energy to write a post about the realities of her life with metastatic IBC. Her in-depth, honest, complete account is a labor of love. Please read her story if you want to get past the pretty pink and know what we’re really up against.

    Likewise my other friend “down under”, who today wrote a post about facing death. This woman continues her commitment to getting her university degree while coping with treatment side effects, and somehow having the presence to pursue her studies while keeping a “my funeral” file. Read her story and get a good look at real strength.

    These women, and other amazing women like them, occupy my cyberworld and lift me when I want to whine. Today I am refreshed from my backpacking trip and have immediately managed to overcommit myself. I have writing deadlines, packing, momming, and a bizillion other concerns before I leave for Seattle on Wednesday, and I could easily just spin out on adrenaline. I don’t want to do that. I want to be mindful, aware every day of how precious each one I have is. I am so, so lucky that I don’t have to live my life under the burden of toxic treatment to keep me alive. I am so fortunate to have the stamina to overcommit myself (sometimes) and get away with it.

    What I can do now is go learn some more, and put that knowledge to good use in every way I can. I also continue to write what I know for whoever needs it. I just published another article for getting through chemotherapy, this one specific to
    managing the effects of taxol
    . My IBC article has made it’s way past Associated Content into Yahoo News, and that makes me happy.

    Susan and J, your stories are where my commitment comes from.

    This last weekend, we had beautiful weather until it was time to leave. The sound of rainfall on our tents got us up and moving. We packed in a fine mist, and then as we prepared to leave we were gifted with the most beautiful rainbow. I have it on my desktop now to remind me to keep on keeping on, and believe that breast cancer can end by 2020.

    hope

    our parting gift

    There is a progression through pink for those of us who get down and dirty into the real world of breast cancer. I liked pink ribbons in the beginning. They made me feel less alone.
    Now, the truth about breast cancer is in the front of my mind and I am annoyed by the large scale public complacency about a disease that we have been led to believe doesn’t kill people any more. I used to believe that. I had heard about mammograms saving lives and seen the pictures of triumphant women in pink hats all sweaty and beaming from their race for the cure. I was shocked when I realized that my survival was not a foregone conclusion.

    This month, I am acutely aware of sisters all over the internet who are dealing with metastatic disease. I am acutely aware that many, many women still have never heard of Inflammatory Breast Cancer.

    This last couple of weeks, I have been feverishly exploring freelance opportunities, because I want to free myself from the constraints of location and schedule. The added bonus that I love to write makes this strategy a no-brainer. I am going to a conference this month to learn more, to become a more effective advocate. The more work I can do on the internet, the more I can afford to take time to go where I can be of service. This is the desire of my heart, as I near the five year anniversary of my diagnosis.

    Another sister who first faced IBC in 2007 is struggling and it is deeply, deeply painful to me.

    One of my favorite people, Ginny Mason, said:

    “I’m on this side of the grass, so I figure I have a responsibility”. Ginny is a 20 year plus survivor, which gives us all hope! She is the mastermind and prime mover of the IBC Research Foundation.

    So, in keeping with my responsibility because I am on this side of the grass, I used my new found influence at Associated Content to publish an article on IBC. I became a Featured Contributor this last month and one of my first assignments was to write an article about any disease or condition I wanted. Of course I wrote about IBC. It made the front page of the “health” section of the Associated Content website and so far has been viewed over 5000 times in the last three days. That’s 5000 people who didn’t know, and now they do! You can view the article here. Please send it on to anyone you know who may not know about Inflammatory Breast Cancer!

    My personal agenda this month is to stir the pot as much as possible!

    This originally appeared on the Inflammatory Breast Cancer support list. Brenda’s recap was so thorough and well written that I am posting it here, with her gracious permission.

    Sun, May 8, 2011 6:06:49 AM

    The NBCC Conference was an amazing, three-day, highly choreographed event that left me breathless. It is what ritual does, at its best, and they did it very well, indeed.

    Many of the attendees were first-timers, like me and Kate. I don’t know what their conferences are like when they are not rolling out a new organizational campaign, but given that all conferences are centered on training participants to go to Capitol Hill and lobby for breast cancer issues, I’m guessing that most of them are more or less like this one.

    They were very tactful but very clear that none of us was there to talk to our lawmakers about things on our own minds about breast cancer — our own pet issues. We were there to talk to the lawmakers about the NBCC’s issues. Each state delegation that visited legislators was managed by a “team leader” who is an experienced NBCC member and has done this several times before. She was the one who did most of the speaking to the legislators, and she made sure that our group delivered its basic message. Others were allowed to speak, and as we demonstrated ourselves able to stay on-target with the NBCC message, we were allowed more and more opportunity for this as lobbying day wore on.

    Before lobbying day, however, we had three days of back-to-back-to-back conference. I’ve been to a few conferences in my day, and this one was handled rather differently than what I am accustomed to. First, breakfast and lunch were provided during the conference–a way of keeping all participants on-site and ready to hear the talks. Second, there were not a gazillion vendors selling or giving away all kinds of merchandise. There was a lobby day table, an Army of Women sign-up table, an NBCC merchandise table, and the silent auction area. That’s it. Third, the area where these tables were located was closed during the plenary sessions. Again, the point was to keep us in the conference hall and listening to the talks, not wandering around doing other things.

    There were also a variety of individual break-out workshops for us to attend. But there was only time for three of them. The rest of the time was taken up with the plenary sessions. This really was a conference designed to EDUCATE us. They tried to make that education as convenient and compelling as possible. And they did a great job of it.

    The talks were almost uniformly engaging and informative. The conference began with a welcome by Fran Visco, who introduced the new NBCC initiative, Breast Cancer Deadline 2020 — the eradication of breast cancer by January 1, 2020. They had a couple of professionally produced promotional videos for this–very compelling. Fran met the understandable skepticism head-on. “What if we fail?” she asked, and then responded, “We already have.”

    Her point is that in the decades that we have been spending millions and billions of dollars on breast cancer research, we have not come very far toward curing it. We (as a group of women with BC and our various organizations) have focused our attention on early detection (better screening methods) and awareness. But early detection, she points out, is not prevention. And awareness is not prevention.

    The frustrating truth is that in the last two or three decades, the survival rate from the kinds of breast cancer that are most dangerous have not improved much. Most of the improvement in survival statistics has been driven by the inclusion of women with forms of breast cancer (or proto-cancer) that would most likely never have become life-threatening, whose conditions were discovered thanks to improved screening techniques. Also, she pointed out, the survival statistics are five-year survival stats, and we know that many times breast cancers recur as metastases later than five years after diagnosis. So the improvement in BC survival as reflected in the five-year statistics is not really as great as it seems on the surface.

    Here’s the most telling statistic, to me: Twenty years ago there were 119 women every day who died of breast cancer. Today, after two decades of “pink” awareness, there are 110 women every day who die of breast cancer. This is good. It’s an improvement, no doubt about it. But it’s not good enough!

    What we need, Visco said, are two things: (1) a way to prevent women from ever getting breast cancer at all, and for those few who do, (2) a way to prevent metastasis, which is what kills us (not our primary tumors). Of all women who get breast cancer, roughly 30% of us will eventually become metastatic or are metastatic at the time of diagnosis. The vast majority (more than 90-95%) of women with metastatic breast cancer will eventually succumb to the disease. (The rest die of their treatments for the disease or other complications.) This must stop.

    The solution, says the NBCC, is to quit hoping for a cure, and set a deadline for one. Hope waits. Deadline acts.

    The NBCC is proposing several initiatives, the most important of which are a three-year commission to try to bring together researchers and get them working together, outside of their limited research silos (at a cost of $20 million the first year and $30 million for each of the next two years), and continuation money ($150 million) for the Department of Defense Breast Cancer Research Program, which has been a model of efficient and productive use of taxpayer money in BC research.

    The new commission’s proposed budget includes 25% for giving seed grants to researchers whose ideas for curing breast cancer are innovative and promising, but don’t yet have the level of evidence behind them to make them likely to win one of the DOD Breast Cancer Research Program awards. Grants from the seed money will try to funnel new researchers and research ideas into the current mix, in order to accelerate the discovery of a cure for BC.

    The best cure of all, the conference presenters said over and over again, would be not to ever get breast cancer in the first place. The NBCC is already supporting a project (Project Artemis) to develop a vaccine, which is apparently a real possibility.

    My personal take on all this is that while we may be able to drastically reduce the number of women who get BC, it is in the very nature of the cancer beast that we are not going to be able to prevent all forms of BC, which I suspect is caused by multiple factors–not just one easily targetable thing. So why did the NBCC set a deadline for the end of cancer — and such a close deadline — if it’s not likely to be completely do-able, much less do-able by then? I suspect it has to do with the sub-title of the “Deadline” initiative: changing the conversation.

    The conversation about breast cancer in the larger BC community has been on “early detection saves lives.” It’s been on awareness of the illness — bringing it out of the closet and into broader awareness, getting backing for more research on the disease and how to detect it. The whole approach is based on the premise that early stages of breast cancer don’t tend to become metastatic — only later stages do. So the earlier we can find it and treat it, the more likely we are to prevent its progressing to deadly metastatic disease. Thus, we improve the cure rate. We now know that this is not true.

    BC cells don’t “learn” how to become metastatic only when they have progressed to become a Stage III cancer, so if you can catch it early and keep it from progressing, all will be well. Even Stage 0 breast cancer can develop the ability to disseminate cancer cells throughout the body, where they find hospitable micro-environments and lay in wait for an opportunity to grow. Sometimes that happens quickly, sometimes it doesn’t happen until many years later. When it does happen, it’s mets. Stage IV cancer.

    So the “early detection saves lives” conversation is not a very useful way of thinking about and approaching breast cancer, as it turns out. We need to focus our conversation in a different direction. While I think that eradicating breast cancer by January 1, 2020, is probably not possible, I firmly believe that re-focusing the CONVERSATION ABOUT breast cancer is do-able by that deadline. And that would be a huge, huge thing. Re-focusing how we think and talk about breast cancer means we will re-focus our research priorities. And THAT will lead to an end to breast cancer, one day.

    There is some tension between the “rah-rah pink” crowd in the breast cancer world and the crowd that wants to focus more clearly on the continuing needs in breast cancer research and advocacy. I hope that that tension can be overcome, because we need all hands on deck for this. I hope that many individual groups around the country will join the NBCC, which is, after all, a coalition of groups. I hope that many individuals will do their small bit to support the NBCC Deadline 2020 agenda.

    I was pleased to see this conference focus on prevention of BC. I was even more pleased to see it focus so much attention on the prevent of mets. (After all, I have a horse in that race!) There were several talks that referenced this. Quite a number of us walked around the conference wearing stickers saying “Ask me about metastatic breast cancer.” At the end of the conference day on Sunday, an impromptu, informal group of women with mets gathered in one of the break-out rooms for a meet-up. Pat Steeg, a mets researcher at the NCI, was there, too, just sitting quietly in the background. But I noted that as everyone went around the room and briefly introduced themselves and told their stories, her eyes got very red and watery.

    I was also very, very happy to meet so many people whose names I have come to know via our various listservs. Musa Mayer, Ilene Winkler, Maria Wetzel, Ginny Mason, Ann Fanta, Elizabeth Danu, Kelly Kruger, Valerie Frasier, Pam B from Michigan …who have I missed? I am bad with names and worse with faces, so I’ve been trying to mentally conjure the image of each person I met and say to myself, “Remember this face! This is XXXXX!”

    There was only one problem that I could see with the message of the NBCC, which I otherwise heartily endorse. That is the fact that preventing BC and preventing mets doesn’t do anything toward *curing* metastatic disease. Prevention is great. I’m all for that. As I said, I have a horse in that race. But prevention won’t be much use to my many friends who already have mets.

    A cure for mets, you say? I say, yes. Only THAT will be the REAL and FINAL cure for breast cancer. At the conference, one of the speakers mentioned that if we can learn enough about what drives the development of metastases, we may be able to figure out how to put existing mets to sleep — make them dormant so that they don’t kill us. This goal is not formally a part of Deadline 2020, but it may be on some distant horizon somewhere out there. I hope I live long enough to see it become a reality.

    If anyone has even a twinge of interest in attending the next NBCC conference, I urge you to give in to the twinge. You won’t regret it. It leaves you with a head full of new stuff, a heart full of hope, and the compulsion to try to do more to end breast cancer.

    Brenda Denzler is, like me, a stage III Inflammatory Breast Cancer Survivor who attended the NBCC advocacy conference to end breast cancer by January 1, 2020.  We both have the possibility of recurrence and metastasis to contend with, as does anyone with IBC.  It was great to meet her and 13 other IBC sisters this trip!  She currently doesn’t have a blog, but when she starts one I’ll link to it here!

    The more I learn about the real facts about breast cancer, the more annoyed I am by pink ribbons! They had their time and their purpose. Women get more mammograms, and women survive five years from diagnosis more often (there’s a trick to that statistic, it’s not what you think!). Our drug treatments, while still awful, are easier to get through because there are better drugs for the side effects. There are even new drugs, one of which I credit with the fact that I’m still here. Progress has been made certainly.

    Unfortunately, a lot of people still think that “breast cancer is not a big deal. They catch it early, treat it, and you’re fine”. When I was diagnosed, my boyfriend at the time said, “You’re gonna be ok, right?”

    That was not at all the most likely outcome.

    The incidence of breast cancer has not decreased. It has INCREASED. That is correct, and what’s more, the death rate has NOT significantly decreased! Approximately 30% of diagnosed breast cancers at all stages will return later, sometimes years later, as metastases.

    We haven’t put an end to cancer because there has not been a commitment to do it. NBCC is committing to do it. We have a deadline. The deadline is January 1, 2020.

    Pink is pretty, pink is a nice color, pink is demure.

    ENOUGH! The annual tribute to pink every October may feel as if we’re doing something, maybe it makes us more comfortable, but I for one cannot be comfortable when I have friends I care about that are fighting metastatic disease. In fact statistically that’s in my future too, though I can hope not. Is hope all I have? Is hope all I can offer my daughter? Isn’t it time we stopped the grim reaper from stealing our sisters, mothers, daughters, brothers, fathers?

    When I started trying to make a difference in a real way, after I got stronger and found my way back into blogging, I sometimes would get discouraged. A lot I would get discouraged, and weep with frustration. I wasn’t sure I could keep it up, yet the struggle must go on until we conquer.

    After this conference I feel galvanized! I can give it my all, I can work my butt off, I can learn to use facebook, twitter, linked-in, whatever. Because if we all crank like this now we can take a break, or retire (OMG) on January 1, 2020.

    My children are in the future. My friends are now. My friends Susan, Helen, Rachel, Katy, Donna, and many others whose lives are worth fighting for RIGHT NOW.

    I had lunch with a group of amazing bloggers on Sunday. I started to write this post and found my friend Susan has already jumped on it (she is in D.C. after all!), and she has already written a post about the Deadline to End Breast Cancer. She also lists the rest of the tribe of fighting women who are determined to light up cyberspace and make this happen.

    I was planning to do this tomorrow but I couldn’t contain myself!

    I’m jetlagged and my eyes are full of sand, so I’ll put up my own list tomorrow. In the meantime, go check out Mothers with Cancer for a smorgasbord of great blogs to read and more about Deadline 2020.

    I’m in 100%. Are you with us?

    As I prepare to go to Washington D.C. for my first conference, I find myself noodling around the internet again, just learning. There are a couple of women whose blogs I follow, and one of them led me to this.
    I have ranted before about how angry it makes me when a sister falls, or when I discover her story only after she has left this earth. This is a stirring post by a woman who is fighting, a woman I’ve never met, who has opened my eyes about the “pink underbelly” of cancer research and fundraising, beyond the walks and the wristbands. It’s a vitally important perspective to take to D.C. with me.

    Deadline 2020 is for the CURE. That means prevention and CURE, the end of metastatic disease as well as early stage breast cancer.

    Onward!

    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.

    I secured my first Thriver story today.  My wonderful postman, Douglas, has agreed to tell me his story so I can post it as my first Thriver Profile.  My plan is to present these profiles of real people beating cancer on a regular basis, around once every two weeks for awhile.  I have at least twenty people on my list!

    Douglas and I were talking today about what a morass the internet is when you’re newly diagnosed.  There is so much information, and a lot of it is very valuable.  Some of it is contradictory.  Some of it is outdated and scary.  I suspect a lot of us, like my friend Douglas, will flail around out there for a couple of weeks and then “just put it away”.

    I want to offer something different here.  For every cancer, there is somebody who has prevailed against it, and it is those people that cancer patients need to know about!  If you’ve just been diagnosed with colon cancer, Douglas’s story will give you hope.  If you’ve been diagnosed with Inflammatory Breast Cancer, read my story and take heart, because that is why I tell it.  If you are facing Ovarian Cancer, then you can be uplifted by my Aunt Joan’s story and my freind Avis’s story, if they will let me tell them.  I haven’t asked yet!  :)  These two amazing women have both conquered two separate cancer diagnoses.

    I know people who have faced and prevailed against colon cancer, throat cancer, Lymphoma, and Triple Negative Breast Cancer. I know people who were diagnosed at Stage Four and today are cancer free.  I also know people who are in remission and going about their lives, coexisting peaceably with their metastatic cancer. A friend of mine has a brother who has survived over 15 years after a belated diagnosis of Breast Cancer.  All of these people are on my list, and if they say yes, you will read their stories.

    As this site develops, I am getting a clearer and clearer idea of what I want it to be.  This is a place to find tools you can get your hands on with great strength, tools and inspiration to keep your chin up.  Sometimes keeping your chin up is the most important, and maybe the only thing you can really do today.  I’ve had plenty of days like that!

    You don’t have to have cancer in your present, future or history to welcome a boost of some kind.  I hope anyone who wants one can find it here.

    Second thing:  I need to adjust my tagline.  I don’t want just “resources for during and after cancer”.  What can I add to this line that expresses what I’m really doing here?

    Please, comment away, I need your input!

    P.S.  Are you seeing popups on this page?  I you are, I am going to kick some —.  I hate popups and I am getting them on my admin page.  Please let me know!

    P.P.S.  I just updated “my story” with photos.  It’s kind of a long story….

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