Last summer, at the Type A Parent Conference in Asheville, I finally got to meet Susan Niebur in person. Susan, also known via Twitter as “whymommy,” wrote the blog Toddler Planet. I was a big fan, especially because I have a layperson’s interest in astronomy and planetary science. I thought it was so awesome that one of our own, a mom blogger, was also an astrophysicist. How cool must you be to be a blogger AND a mom AND work at NASA?! I was so pleased when she would retweet me, or comment on one of my posts, and we struck up an online acquaintanceship.
I was glad Susan had made it to Asheville last June, because she was struggling with cancer and had been limiting her travel. I was especially excited because I knew I would get to present her with the Bloganthropy Award, given annually to a person who best represents using social media to make a positive difference in the world.
Susan used her powers for good. She scrambled up the side of her suffering and stood firmly on top of it to help other women like her, women with inflammatory breast cancer (IBC). She wrote about how little was known about her particular type of breast cancer and she worked hard to generate awareness, starting with her very first post about her diagnosis in June of 2007 to this piece explaining IBC further:
“It turns out that you don’t have to have a lump to have breast cancer. Six weeks ago, I went to my OB/GYN because my breast felt funny. It was red, hot, inflamed, and the skin looked…funny. But there was no lump, so I wasn’t worried. I should have been … Inflammatory breast cancer is often misdiagnosed as mastitis because many doctors have never seen it before and consider it rare. “Rare” or not, there are over 100,000 women in the U.S. with this cancer right now; only half will survive five years. Please call your OB/GYN if you experience several of the following symptoms in your breast, or any unusual changes: redness, rapid increase in size of one breast, persistent itching of breast or nipple, thickening of breast tissue, stabbing pain, soreness, swelling under the arm, dimpling or ridging (for example, when you take your bra off, the bra marks stay for a while), flattening or retracting of the nipple, or a texture that looks or feels like an orange (called peau d’orange) … Inflammatory breast cancer is the most aggressive form of breast cancer out there, and early detection is critical. It’s not usually detected by mammogram. It does not usually present with a lump. It may be overlooked with all of the changes that our breasts undergo during the years when we’re pregnant and/or nursing our little ones. It’s important not to miss this one.”
I have to laugh when I read this post in which Susan writes about her goals for helping others while going through IBC: submitting a guest blog post or two and, maybe, if she was lucky, “… the penultimate, the local, the pie-in-the-sky — talking to someone at our local newspaper, The Washington Post, to get a story in the Health Section.” Susan blew those goals away. She was featured by Health, and CNN and USA Today and The Washington Post, more than once as I recall. She spoke widely, she raised money and she helped thousands. All the while she also raised her two boys, helped found the DC Moms Blog, and promoted the inclusion of more women in planetary science. She was truly deserving of the Bloganthropy Award, and I’m so honored that I and everyone else there that night got to be a part of the celebration of her life and work with her.
Just a couple of weeks ago Susan was still posting to her blog. Telling us about how she was doing. Her last blog post, the one before her husband wrote to tell the world she had died, was about her family, her husband in particular. This is no surprise. I sat alone with her in Asheville, in the little carpeted bar of the Renaissance Hotel, and we talked about her anxieties and her concerns. The focus of the entire conversation was her family, her two boys and her husband. All she cared about was that they would be okay. All she talked about was doing whatever she could to help them get through this. I’ll never forget her face during that conversation, how every filament of focus was trained on her family.
The last sentence she wrote for us to see was, “More tomorrow, my friends. I hope.” We hoped, too. We hoped desperately but there was no more, and thousands of us — both those close to her and those far away — are devastated. We wrap our virtual arms around her family and thank them for sharing her with us.
Thank you so much, Susan, for showing us your strength, your smile and your courage. Thank you so much for all that you did to help others. We will miss you.