One Year Later: Remembering Susan & Rachel

The Rebel Bloggers of NBCC 2011

To those three or four people out there who still doubt the power of social media, perhaps this post will erase your skepticism forever.

One year ago today, on Monday, February 6, 2012, Susan Niebur and Rachel Cheetham Moro both died of metastatic breast cancer. Susan was 39. Rachel was 41. A stunned sorrow was felt quite literally by thousands of people around the world.

I had the great good fortune to meet both of them in person, at the 2011 National Breast Cancer Coalition Conference in Washington, D.C., Susan by serendipity, Rachel by design. It was my first encounter with Susan, and frankly, when I learned about her broad and influential social media presence, I was astonished that I had not discovered her before. Rachel and I met because we planned to meet, along with three other bloggers who’d become good cyber-friends, to get to know each other in the real world.

Among the hundreds of attendees at that conference, we were part of a small but august group of cheerfully troublesome, not-entirely-well-behaved breast cancer bloggers. We were not all known to one another before then, but somehow, no doubt emanating highly-tuned social media vibes, we managed to find one another. We gravitated to a table near the back and off to the side of the main conference room, where we could be close to the wall outlets and keep our cell phones and laptops charged up. And also, truth be told, we were the naughty kids in the classroom, and our corner allowed us to giggle and grumble and snap pictures of each other. And ask pointed questions. And become friends.

My Favorite Astrophysicist

Susan, I soon learned, had metastatic inflammatory breast cancer. I also learned that she was not only a prolific blogger, but an astrophysicist. A sister blogger AND a sister science nerd! She was certainly the only one of us to have a profile on the website for NASA, her former employer.

During a trip with her parents to the Johnson Space Center in Texas, when she was a mere three years old, she noticed that there weren’t any women in the photos of astronauts. She decided there and then to rectify that omission and become one herself. In 2003, she realized her dream and joined the NASA staff as a scientist for the Discover Program. She didn’t end up on a rocket ship, but she was a card-carrying rocket scientist. When she left NASA in 2006 after the birth of her first child, she continued to consult for them. One of her NASA-funded research projects led her to start the blog Women in Planetary Science, and to organize the first Women’s Networking Breakfast at the Lunar and Planetary Science Conference. In her profile interview on the NASA site, she said,

“I wanted to gather the women together to address issues that I’d heard discussed year after year in the hallways and in the bathrooms — frustrations with the difficulties inherent in the field, such as getting funding, changing jobs, serving on missions, and balancing work and family; difficulties that are only made worse by the fact that most of the women in this field are also married to men working in the field or in closely related disciplines. It was a gamble, but it paid off — we had over 100 women attend, and they were eager to share their concerns and work towards resolving them in ways that helped the community as a whole.[…] Now the breakfast is an annual event, attended by 150-plus women, including management from NASA headquarters. It is thrilling to see a room full of energetic, passionate women mentoring each other in real-time and making plans to do more throughout the year — and to have NASA headquarters there too, listening.”

She was passionate about getting more women and girls involved in science, math and technology. As the mother of two small boys, she was also passionate about parenting and about encouraging every child’s sense of curiosity and exploration, leading to her Twitter moniker @WhyMommy. As a woman with breast cancer, she was driven to raise awareness about her own disease, inflammatory breast cancer, a pernicious and aggressive form of cancer. Like Rachel, she spoke eloquently and candidly about the reality of living with metastatic breast cancer and about the trivialization and ignorance of metastatic disease in a culture rife with pink merchandise marketing. She started a half dozen blogs and websites, wrote and published articles, and was invited to speak, on all of the above concerns and more, by many groups and organizations. Her achievements won awards and grants, including one for her blog Toddler Planet from Bloganthropy.org. She was particularly beloved by a group of women in her home town of Washington called The DC Moms. I encourage you all to visit her site, SusanNiebur.com, to find links to her many blogs and activities, and read more about her remarkable life. How she managed all this while dealing with the ravages of her disease is little short of a miracle. But she did, with grace, dignity, and deceptively gentle, often humorous, wisdom.

Love That’s Really Real

Sometime during the month of October, 2010, both Rachel and I, then unknown to one another, discovered the perfect antidote to the pinkwashing and exploitative marketing that had perverted breast cancer awareness. It was a book called Pink Ribbon Blues, written by activist and sociologist Gayle Sulik. Each of us contacted Gayle to convey our enthusiastic approbation, and that initial communication grew into cyber-friendship among a group of us rebel bloggers, who came to use every means of cyber contact at our disposal to brainstorm, offer support, and encourage one another to keep exposing the insidious flaws and insults of what I came to call the Pink Peril. Inevitably, Rach and I discovered each other’s blogs, along with a shared love for our dogs, and a mutual propensity to use parody, humor, farce, and, above all, hard evidence, to skewer Pinktober.

Like Susan, Rachel was a math whiz. Originally from Australia, she travelled to countless countries, including a bicycle trip in Viet Nam, a safari in South Africa, and a month in Tuscany. She channelled her considerable analytic abilities into becoming an accountant, certainly flouting the stereotype of that profession that depicts its members as dry, humorless bean-counters. While on a trip to London, she met her future husband, Anthony, and, after many more travels together, eventually moved to New York, where she attended Fordham and subsequently worked for one of the premier accountancy firms in Manhattan. She adopted a puppy, whom she named Newman. Soon, she and Anthony bought a house on the New Jersey coast. An avid gardener, Rachel planned and planted her much-beloved garden. She taught herself to become a gourmet cook. She worked, kept in touch with an enormous and dedicated group of friends and family members. She lived every minute with joy, vivacity, humor and love.

Just as she and Anthony were reaffirming their life together, Rachel was diagnosed with breast cancer. She tackled it as she tackled the rest of her life, with gusto and confidence. Finally, it appeared that her cancer was in remission. But not for long. On June 2, 2009, she wrote her first blog post, on the eve of a doctor’s appointment during which she would hear that her cancer had returned. And would never leave.

As many would discover — and still discover — Rachel soon began to apply her formidable intellect to the breast cancer culture. She wrote movingly, bluntly, often humorously, and always incisively about the realities of living with metastatic disease. Two of her most far-reaching blog posts, Komen by the Numbers and its follow-up, Komen by the Numbers: 2010 and Still No Answers, both written in early 2011, are still quoted and cited by bloggers, authors and journalists who seek to expose the glaring contradictions and misguided priorities demonstrated not only by fundraising groups like Komen, but the entire culture of pinksploitation. She forged everlasting bonds of comradeship, support and affection throughout cyberspace. In particular, she lent her public cyber-voice to the work of Breast Cancer Action, and to their project Think Before You Pink, as well as to METAvivor.org, a non-profit group which raises funds that go solely to research into metastatic breast cancer.

Via Skype, email, Facebook, cellphone, and, I often think, sheer osmosis, Rachel personally exhorted me to keep digging into issues for which we shared a mutual passion — not only the Pink Peril, but the misleading hype of reportage about breast cancer research; the paucity of funding for research into mets; the real costs of having breast cancer, financial, physical, and psychosocial; the inequities inherent in the healthcare system; and so much more. It was she who suggested that I turn my snarky graphic from Grumblers for the Cure, into a badge that we grumblers could post on our blogs. On New Year’s Day of 2012, Rach published 2012, With No Apologies to 2011, in which she coined the term ‘bitchblogging,’ a term we mutually applied to ourselves with pride. It would turn out to be her second-last post.

Fittingly, the last post she wrote was For The Cure, Or Not?. Metastatic breast cancer had dragged her to hell and back throughout the previous year, and yet, in characteristic style, she still managed — prophetically, it turned out — to skewer Komen’s immense hypocrisy, the depths of which we were all to discover in the days preceding her death, when Komen infamously withdrew funding to Planned Parenthood.

One of the things that most pierces my heart is that, despite or maybe because of the horrific miseries of 2011, Rach had invited some of her sister bloggers to spend the weekend with her at her home in early March. I was delighted to be included. When she died, just a few short weeks before that weekend, my heart shattered with rage, impotence and speechless grief.

The title of this description of her is taken from a song that she loved and laughed about, that 80’s anthem about the sheer bliss of life and love, ‘Walking on Sunshine,’ by Katrina and the Waves. The day before she died, I posted a video of the song on her Facebook page, used as the soundtrack for a splendid, remarkable dog-training video. She had just spent a dreadful week in the hospital, and last we’d heard, she’d made it out of ICU and seemed to have made a turnaround. The video was perfect — three of the things she loved — dogs, that song, and a day at the beach. I don’t know now if she ever got to see it. The next morning, we heard that she had died. Still, this line from the song is as true now as it was then:

“I feel the love, I feel the love, I feel the love that’s really real.”

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Today, one year after that wretched day in February, I know that I do not grieve alone. Today, my heart and thoughts are especially with Curt Niebur and his two little boys, and with Anthony Moro, Mandy Cheetham, and all of Rachel’s extended family.


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This entry was written by Kathi, posted on Wednesday, February 06, 2013 at 03:02 pm, filed under Fighting the Pink Peril, Life & Mortality, Metastastatic Breast Cancer and tagged , , , , , , , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

35 Responses to “One Year Later: Remembering Susan & Rachel”

  1. Dear Kathi,

    Thank you for sharing these touching remembrances of two amazing women. Although I never had the good fortune to know Rachel either in real life or through her blog, I followed Susan’s blog for some time, and was saddened to hear of her passing.

    From what I have come to know of Rachel, through your posts and those of others, I can only say that she sounds like an inspiring woman. The way that you and your ‘sisters in snark’, if I may use that term, are carrying on her legacy by continuing the conversation is inspiring in itself.

    I am thinking of you today.

    Take care,

    Casey

  2. They were both amazing, Casey. I only wish we’d all had more time to know both of them. šŸ™

  3. These are incredible memories, Kathi. Susan was a force for women, with a smile that transcended the reality of her disease. And that song by Katrina and the Waves blared from the speakers at a conference banquet last February on Rachel’s last earthly night, and again at her memorial service as the final send-off. We so wanted her to “feel the love.” I think they both did.

    Xxx,
    Gayle

  4. I know they both did, Gayle. I sat watching that dog-at-the-beach video on Sunday night, over and over, crying, smiling & thinking of Rach. And then spent a few hours reading about all the things that Susan did, for moms with cancer, for we girl-geeks, for the American Cancer Society, for IBC, for her sons & Curt, and cried again. xo

  5. Hi Kathi,

    You are so lucky you were able to meet both of these incredible women. I remember that NBCC Conference as I was wishing I was there sitting at that table! This is really a wonderful tribute to Susan and Rachel. I can’t believe one year has already passed since their deaths. And no, you certainly do not grieve alone. My heart aches for their beloved families today. Hugs.

  6. Oh, Nancy, I cherish the memory of meeting them both. It still blows my mind that we lost them both on the same day. xoxo

  7. You did them both proud. (And all of us too.) A splendid (despite the sadness) remembrance.
    xo

  8. Thanks, Renn. xo

  9. Oh Kathi, so beautiful. Hugs.

  10. Stace, I’m glad you and I got to meet, too. We all need to do it more often. xo

  11. Reading your words, I began to cry. I never met either of the women, and yet feel such a deep connection to them. A year ago tomorrow I was diagnosed. In those days waiting for the official word of what I already knew, I sought out all the information I could find….looking for someone or something that spoke to what I was feeling. I found the blogs of both these women and then the sad news of their deaths. They gave voice to much of what was swimming in my head. I didn’t feel very “pink”. I didn’t want races, and balloons, and ribbons, and yogurt. I wanted my life. I wanted a cure. I wanted to know WHY I had breast cancer with almost no reason. I wanted to know my daughter and granddaughters were safe, that my friends were safe, that *I* was safe. I wanted to know I would live long enough to see my son to adulthood… and beyond. I wanted answers. And hope. So even though I never them. I feel like I know some thing about them. I thank them. I grieve them. I remember them. Thank you for sharing a memory.

  12. Lesa, we are lucky that their words & wisdom live on to help us all. And I hope you are healing & getting some of your life back. Please stay in touch & let us know how you are doing.

  13. Oh Kathi,

    My heart is filled with sorrow. Your tribute is so beautiful.

    xoxo

  14. Such a profound thing, Beth, to carry sorrow and gratitude in our hearts. xo

  15. […] was a year ago today that Rachel Cheetham Moro died. Those who love her, and areĀ inspired by her, continue to absorb this reality and try to keep on keeping on. It’s not […]

  16. I’m sorry for your heartbreak. I’m sorry the world lost two such valuable advocates of the breast cancer truth. I’m sorry that I didn’t get to meet up with you when you were so close to my home city. I’m not sorry, ever, to read what you have to say. Even in your sorrow, I marvel at the beautiful way you convey your thoughts and feelings. Some days I struggle just to stay on top of what’s going on 5 feet in front of my face, so when people are able to tackle problems like you all do in your blogs, I am both humbled, and amazed.

    Special hugs to you on this special day my special friend.

  17. Bonnie, thank you for your kind, kind words. Believe me, I often struggle to stay on top of things, too. And yet, writing this was difficult but cathartic for me, and I must admit I’d often much rather write than try to do my laundry!! Hugs back.

  18. Thank you for this eloquent rememberance, Kathi. I found Rachel’s blog at time when I felt no one was saying what I felt in my heart…and she said it all so well. Her research-and-report abilities astounded me, and I feel like *you* are doing a fine job carrying that on!! Grumblers unite! šŸ˜‰ Love you! -shelli

  19. Shelli, that’s the dearest thing anyone could say to me, that I am carrying on. It’s been hard to write at all without Rach. xoxo

  20. Thank you so much for sharing this on the @whymommy FB page. I can’t tell you what it means to me to hear from new people about the woman who was my best friend for most of my life. I hadn’t seen that picture of Susan before – it’s great.

    I also appreciate learning about Rachel. I didn’t know that two brave IBC survivors died that day.

    Thanks for writing this – and for linking it.

  21. Marty, I think I just listened to you playing that song, His Eye Is on the Sparrow, on FB. I’m so, so sorry you lost your best friend. As much as I ache over Susan’s loss, your having her as a close friend for so long must have been an amazing gift, and a gut-wrenching loss. I remember seeing posts for the @whymommy love fest last year. I so loved the video greetings you all made. I watched them again Sunday night. Susan was loved by an astounding number of people. Thank you so much for commenting. Both she and Rachel will never be forgotten.

  22. Dear Kathi,
    What a beautiful post about two incredible women. I am speechless. I just read Gayle’s post and now yours. (Six months ago, I lost two friends – also 12 hours apart (what is it with this disease). Both to cancer, not both to breast cancer. But, again both within the same day.

    So, nothing will change unless we demand it.

    What a beautiful, beautiful tribute to both Rachel and Susan. I am so moved. You are incredible.

    Much love to you and condolences for your deep, deep loss.
    xoxoxox
    Lisa

  23. Lisa, I’m so sad to hear about your friends. Yikes. And yes, what the heck?? I just hate cancer…

  24. I love this tribute. So perfect. Such a wonderful way to honor these incredible women. Thanks Kathi.

  25. Oh, CB…thank you. Their loss will hurt our hearts for a long, long time. Hugs.

  26. Dearest Kathi,
    heart breaking, touching and extremely close, bare, vulnerably beautiful post.
    Rachel was my 1st BC blogger, and therefor, the one that inspired my advocacy and approach more then any other. I kind of envy you were friends… She has defiantly made this world better.
    A big hug
    <3
    Efrat

  27. Efrat, it was a privilege and a joy to know Rach, by any means. Those of us who got to know her outside of her blog feel lucky indeed. She was someone who lived fiercely and full-on, so it’s only natural that she inspired fierce and full-on affection in us all. We’ll never stop missing her. xo

  28. Susan and Rachel made such a tremendous impact on those of us in the blog-world, and you are carrying on with their important work. Well done; I think they would approve.

  29. Thank you, Nancy. I hope so. I could easily have written a separate & longer post about each of them. xoxo

  30. Dear Kathi,

    This is beautiful. I only stepped in this world of social media six months before the deaths of Susan and Rachel. I was immediately embraced by all. My heart shattered one year ago, for their families and for all of you who were so very close to Susan & Rachel. Their words, their blogs, their comments…. all treasured gifts that I visit frequently, wishing things were different, knowing they are not and hoping to keep bitchblogging to make a difference. Somehow. It’s HIGHLY personal on so many levels but it’s beyond that. It’s the community we share. It’s the way we are all connected. It’s the love. And it’s real.

    xoxox
    AnneMarie

  31. It is, AM, it’s entirely personal. Rach & Susan were exceptional women, no question, and a measure of that is how much they were loved by so many people who never met them. I’m so glad you are here in our blogosphere, too, bitchblogging in fine style. If we ever doubt that our words make a difference, all we have to do is think of Rach & Susan. If anyone needs proof of the power of social media, they exemplified it. Big hugs to you & your mom.

  32. A lovely post.

  33. A wonderful tribute, Kathi. I am so sorry to have never ‘met’ these extraordinary women, whose intelligence and spirit shines through your words. A tragic anniversary, indeed.

  34. You wrote beautiful tributes to Rachel and Susan. Kathi, you had a real loss. I can see the friendships with both of these women left a real impact on your life. I’m so sorry.

  35. Thank you for your kindness, Eileen. I didn’t know Susan as personally as I knew Rachel, but I admired her advocacy very much and loved her writing. Rachel I counted as a friend, and was lucky to share a number of friends with her. Her loss hurt us all deeply. Both women inspired me. I console myself by being grateful to have crossed their paths.

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