BC claims a two-fer
Posted: February 7, 2012 | Author: pinkunderbelly | Filed under: breast cancer, cancer fatigue | Tags: breast cancer bloggers, inflammatory breast cancer, metastatic breast cancer, mycobacterium fortuitum, post-mastectomy infection, Ralph Waldo Emerson, the Big Dig, The Cancer Culture Chronicles, the Texas Medical Center, Toddler Planet, whymommy, young women and breast cancer |15 CommentsThe icy grip of death got a two-fer yesterday. The world lost not one but two beautiful souls and because of this vicoious disease known as breast cancer, two important voices in the blog-o-sphere are forever silenced. Rachel Moro Cheetham, better known as Rach from the Cancer Culture Chronicles, and Susan Niebur of toddlerplanet both died yesterday. Rachel was the one who enlightened me to the appalling statistics that exist in the financials of the Susan G. Komen “For the Cure” organization [emphasis mine]. Rach is gone, but her tell-all pie chart will live on. Susan was an astrophysicist with NASA and mom to a 4- and 6-year-old boy who fought inflammatory breast cancer in her spare time. She compiled a list of science-related links, for kids and adults, on her blog full of science, parenting, and “the joy of life after cancer” that will no doubt become part of her legacy.
Rachel and Susan are beautiful examples of the pioneers in BC blogging. They blazed a trail and lit the way for newbies like me. They challenged and questioned and refused to wrap themselves in pink ribbons. They inspired me. By setting such a stalwart example, they encouraged me to do the same.
I’m not alone in my admiration for and my grief over these two women. A few blurbs from the BC world about them:
“Pretending that the pain isn’t here would be a disservice to the raw honesty of their voices.”
“I am stepping up to be a fearless & rebel friend. We need to keep their voices strong & heard by many.”
“If I could dim the lights on my blog, I would. We all took a big hit today.”
“I feel more resolve to stir the hornet’s nest.”
“CRAP CRAP CRAP.”
“Talk about hopes, dreams, plans, fears–then get out and live the life in front of you.”
“We will mourn and we will be sad and then we will become a FORCE that will not be turned back.”
Powerful words that befit powerful women.
When I created this little blog, it was initially to keep those closest to me informed of the steps and stages in my cancer “journey.” The plot thickened, however, and that “journey” became more perilous. A mysterious post-mastectomy infection, a month’s worth of hospitalizations that spanned the summer and three different hospitals in my great city, multiple surgeries to contain the scope of the infection’s destruction, two infectious disease teams, countless bags of antibiotics–both in the hospital and at home, and 267 days of oral abx gave me a lot on which to report.
Then came the harrowing process known as reconstruction. Thanks to the infection, nothing was simple, and what should be the final stage of the BC “journey” was anything but. Two revisions later, there’s still work to be done, and I’ve got many miles to go before I sleep. This little blog went from “Hey y’all, here’s what’s happening” to “y’all aren’t gonna believe this,” and in the process, this little blog morphed from a news bulletin to some serious therapy for its author and creator. Without the outlet that is publishing my most pressing thoughts, I could possibly be staring through the peephole of a padded cell instead of pounding out my latest missive on my iPad in the comforts of home.
I knew when I started this little blog that I would learn from my fellow BC bloggers, but I didn’t know I’d learn so much about this vicious disease that, for a time, took over my life and that has forever changed my life. As I put myself out there in the blogosphere and in the twitterverse, I found more and more blogs written by women like me–everyday gals from all walks of life in all corners of the globe confronting a nasty beast while also maintaining a career, running a household, and/or raising children. I’ve gotten to “know” some incredible women whose writings have educated, humbled, enlightened, and entertained me. Somewhere along the way, in between the updates and follow-ups that become the fabric of a cancer patient’s life, we became friends. United in our commonality of being members of a club we never wanted to join, we bond over blogs. We hold our breath as our blog friends report the news of the ever-ominous follow-up scans, willing it to be NED (no evidence of disease) news. We wake to the words on the screen written by fellow foot soldiers in this wrenching war. We cheer aloud in front of glowing computer screens late at night when there’s news of a final radiation session, and get teary-eyed as we envision our blog friend ringing the bell in the infusion suite to signify the completion of chemo. We nod our heads in tacit understanding of the trials & tribulations that are a cancerchick’s life. We lean on each other and support each other, hopefully in equal measure.
In the throes of my cancer “battle,” I had a hard time reading the blogs of the cancerchicks who were battling MBC, the acronym for metastatic breast cancer. I shied away from those blogs because they were living the life that scared me the most. See, in my naivete, I wanted to believe that a cancer diagnosis at age 40 was the worst thing I’d ever endure (even thought I knew that facing the death of sweet mama was a million times harder). I wanted to believe that my cancer was the good kind, the easy kind, the kind that would never come back, even though in my heart of hearts I fear that it’s only a matter of time. In the beginning, I read the BC blogs from the outside, looking in, but before long, I became one of them. Like Rachel preaching the deception of SGK and dreaming of escaping from it all in a red karmann ghia, and like Susan arguing with her oncologist and imploring him to discharge her from the hospital after too many days away from her precious kiddos, I became one of them. They led by example and encouraged me to widen my sphere of influence. They were like rock stars in the blogging world — I looked up to them. Like getting an autograph from an admired celeb, a comment from them on one of my posts on my little blog was a thrilling keepsake. That their comments are no more fills me with great sadness. Thinking about those they leave behind — Rachel’s scruffy little dog, Susan’s sweet little boys — sears my heart.
Ralph Waldo Emerson wrote, “Do not go where path may lead, go instead where there is no path & leave a trail” Rachel and Susan, you have my heartfelt thanks for leaving a trail.
The Pink Underbelly 
Wow, devastating news. I am glad the therapy of writing has kept you from that padded room. However, it has done much more than that. You are now one of those “important voices in the blog-o-sphere.” I feel certain many others share my opinion that yours is a voice worth hearing and you have a knack with turning a phrase. I hate that it took cancer get you writing but love that you are doing so. Is that the essence of life or what? The good and bad are inextricably woven together so that we can not have one without the other.
You’ve just made me sad for people I’ve never even heard of. I have a mental image of two bright candles being snuffed out. I’m glad yours is still burning. Keep doing what you’re doing and keep waking me up to the sucky reality that is breast cancer.
Big hug.
What a moving tribute to two kindred spirits.
You really captured MY thoughts about my own journey with this line: I wanted to believe that my cancer was the good kind, the easy kind, the kind that would never come back, even though in my heart of hearts I fear that it’s only a matter of time.
Hearing the sad news of death from breast cancer makes me realize that hey, if it can happen to them, maybe it can happen to me.
While I fully realize that cancer has more QUIRKS than PERKS, I will continue my quest to find 100 perks of having cancer, and hope that in the process I will be able to face my uncertain future with a positive attitude.
Cancer Warrior
http://www.perksofcancer.com
Nancy…do you really think it’s just a matter of time before you see BC again?? Wow, I knew you lived each day knowing you COULD, but I had no idea you felt that it’s probably a sure thing. NO, NO, NO! Also, I always thought uterine cancer was the “good kind”. The slow-growing, and therefore, easy to catch kind. After all, it happened that way for Fran Drescher! Well, through you, I learned that is NOT the case. Isn’t it funny the preconceptions we carry around? I am glad to know the truth, even if the truth is scarier than the fiction I carry around in my head. I’ve learned that a mastectomy is more than taking off two breasts at skin level and replacing them with two perfectly perfect new breasts. As I type that I realize how totally stupid it sounds. But again, thank you for the truth. I am hoping so hard, especially today that you never have to go down this road again.
Like you, I shied away from Stage IV because I didn’t want to get too close to it. All the time I realized my thinking made me no better than those who shy away when they hear that we’ve been diagnosed in the first place. In the last six months, I’ve been getting to know our sisters, thru their blogs, who have a metastasis. Unfortunately, I didn’t learn near enough about Rachel and only crossed paths with Susan on our Monday night #BCSM chats. Like all of us, today, their deaths are a sobering reality that we could be Susan and Rachel.
XOXOXO,
Brenda
Nancy, just beautiful. All of it. So much resonated with me. Finding this community way out in cyber space was indeed, a life saver for me, too. Finally, a place to let it all out, but it comes with a dark side, saying goodbye to our friends. Crap is right, but I’m still so grateful for you all.
This was a lovely tribute, Nancy. I’d only just started getting to know Rachel, and Susan was unknown to me, but the outpouring of love has been phenomenal.
Nancy, this was an awesome and beautiful homage. Truly.
I could not get through this journey without this community. Thank you for being part of it.
To all those sistahs that have been lost, we will continue to pay it forward in your honor by being your voices… the voices of change.
thank you for sharing this news, and rawness of the realities that we may be faced with…though lets hope we all are endruing together for a long time. new to the cancer blogging world, i did not get to share in their inspiration, but will now.
best of health and healing to us all.
What a beautiful tribute to two amazing women. I’m so sorry you had the occasion to write it.
I am not in your “club,” and hope I will be fortunate enough never to become a member; but I sure do benefit from your eloquent writing, and know exactly where I would find support if I am ever faced with the dreaded cancer diagnosis.
Thank you for your fearless power of example.
An amazing tribute to two amazing women. Our world will never be the same without them. Like you, I was scared to read blog posts of women in advanced stages of breast cancer. It scared me half to death. But when I got to know them through their writings and appreciate their humor and snarkiness, all fear vanished into the night. And they went boldly into that good night. We will miss them dearly, and try to follow the new trail they blazed. XOXO
[…] BC claims a two-fer […]
So much in this post…you really articulated our feelings so well here – thank you xxx
[…] The Pink Underbelly pays a beautiful tribute to Rachel and Susan’s legacies when she writes of how they ” blazed a trail and lit the way for newbies like me. They challenged and questioned and refused to wrap themselves in pink ribbons. They inspired me. By setting such a stalwart example, they encouraged me to do the same.” […]
[…] Getting a glimpse into the harsh realities of metastatic breast cancer is a sobering experience. Through intrepid bloggers like the beloved Rachel and the eminently wise Susan and the witty Sarah (who had ovarian, not […]