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Reposted from March 23, 2012 in support of increasing awareness and support for Metastatic Breast Cancer research. Please visit METAvivor to learn about “The Elephant in the Pink Room.” 

Perhaps it is because my family history is bereft of breast cancer. Perhaps I was lulled into a false sense of security by three mammogram reports that lacked information about the density of my breasts. Whatever the reason, until my own diagnosis, I assumed that breast cancer was what happened to other women in other families.  Such naïveté. Cancer always happens to people who are just like you and me. In fact, the Dr. Susan Love Research Foundation estimates that 70% of the women who have breast cancer, have what is known as a “sporadic occurrence” – no family history.

It is almost twelve months now since I heard the Breast Patient Navigator tell me, as if by rote, but not unkindly, about the malignant tumor at 12 o’clock, 3cm from the nipple of my the right breast. I imagine, in her almost-cozy office, she has had to deliver the same sentence and respond to the same shock all too often. While I wept, she reassured my husband and me with what I now realize was relatively good news. While many of the details are unclear, I distinctly remember her congratulating me on having found the lump all by myself, reassuring me, “what you’re hearing today is not a death sentence.” It isn’t. Not yet.

The day before her pronouncement, I would never have predicted that the day after – and every day since – my life would often resemble the one I led as a graduate student, before motherhood, before the Internet and the iPhone, an artful balance of work and study with frequent visits to the musty basement floor of the old Phoenix Public Library, a library made of bricks and mortar. There, I spent countless hours perusing education periodicals and old newspaper articles on microfiche, taking notes, and making photocopies. Almost twenty years since, and in the interest of full disclosure, the notion of continuing a formal education is wholly unappealing. Thoughts of a PhD fell by the wayside during a summer conference at Harvard some years ago when I realized I have a deep aversion to homework. Nonetheless, I was duly seduced by the aura of Harvard University and readily donned the mantle of “academic” – for all of one day. Reality set in when I failed to complete the required reading and subsequently spent classes avoiding eye contact with the lecturer just in case I was called upon. Clearly, further education was out of the question for me. However, in the past year, the language and politics of breast cancer have forced me to resume the ways of a full-time, often recalcitrant, student with a full-time job.

Until one Monday evening this past March, I thought I had done a decent job on my breast cancer homework. I could talk quite knowledgeably about breast density and mammograms, estrogen and progesterone receptors, and the difference between DCIS and IDC. I had even learned how to decipher a surgical pathology report. Regretfully, I had not been thorough enough. Peeling away the layers of awareness, I felt betrayed, duped even, by a media saturated with stories of breast cancer like mine, of ribbons and races, of celebrities who triumphantly “overcome.” A cold reality emerged from a virtual conversation with a group that meets online every Monday, 9pm ET at #BCSM, The Breast Cancer and Social Media Tweetchat.  It was here at “the intersection of breast cancer and all things social media,” that I learned about metastatic breast cancer, mets, and METAvivor, a volunteer-run non-profit which has coalesced around three sad truths: support for mets patients is lacking; awareness about the disease is strikingly low; and, research devoted to mets is woefully underfunded. 

A neophyte to breast cancer country and Twitter, I was a stranger in a strange land by any measure.  Odd, then, to experience such a level of familiarity in the virtual company of The Breast Cancer and Social Media twitter chat, where truth is conveyed at lightning speed in 140 characters or less. That particular Monday, the group was “speaking” with @CJMeta from Metavivor,  Dian “CJ” M. Coreliussen-James  who introduced herself thus:  “Founded an MBC support prog 07. Grew FAST! Knew we could do more as non-profit. And 4 of us founded METAvivor in Jan 09.” Such urgency behind those words. This was an unfamiliar urgency. @MetaCJ then went on to explain that “METAvivor offers support, builds awareness and funds MBC research. 100% volunteer run. Most have MBC.” And then the sentence that leaped from the screen and into my heart:

One of the things we talked about today was this reality: of four founders only two are still living.

Re-tweeted again and again, the message was clear. Metastatic breast cancer is the kind of breast cancer we all fear most, the kind that spreads to distant places on our boides, usually the bones, the liver, or the brain. It was beginning to dawn on me that the lump in my breast was not the thing that could kill me; a lump could be survived. But the breast cancer that metastasizes, the cancer that spreads to distant organs is not considered survivable.  METAvivor is committed to helping change what continues to be this tragic inevitability.

At the risk of oversimplifying a complex issue, I wonder if we could figure out what causes the spread, then couldn’t we figure out breast cancer?  Figuring this out requires research, so surely metastasis research is well funded? No. During the Tweetchat, CJ explained that a mere 2% of US Breast Cancer dollars support metastatic breast cancer research. Two percent.  How could that be? Could it be that we have grown content, as a country, with detecting lumps and accepting as acceptable the race toward cure before cause. The Tweetchat left me knowing, in no uncertain terms, not only are there many types of cancer, but also that American culture is paralyzed in a paradigm that sees one type of cancer, mine, as more “socially acceptable,” more worthy of media attention and research than others. With that in mind, I posted a comment at the MBCNBuzz website in response to a powerful letter to the Editor of US Weekly. “I am so tired hearing of celebrities putting a happy face on for cancer.” Buried in over 30 responses, I found this comment by someone I know only as Kelly K:

“With no family history, no positive genes, I was dxed with stage III lobular triple positive breast cancer at 29 and mets at 30. That year my oncologist practice selected me to be honored at a Komen luncheon. I spent a few hours one day being interviewed for a video they do about the honorees breast cancer story. My onc selected me bc when I found out I had mets, everyone I knew from working in a hospital and covering oncology at times, had died quickly it seemed. She said because the ones doing well just go about living their lives. I wanted to show people that was true. Komen edited out every reference to my mets in the video. If that isn’t pink washing I don’t know what qualifies. That experience was March 2003. I’m still here with mets to stomach, ovaries, pleural lining now with effusion, adrenal gland and countless lymph nodes. Just started seventh chemo regime yesterday. But you know what I’m still here, still living my life as a mom to a wonderful 11 yo son, wife, daughter and friend.”

I can only tell her I am sorry and pledge to Kelly that I will do my part to  “edit in” her story and the stories of those who live with mets. I am still dismayed by Komen’s treatment of her, that they apparently wanted to hide from view the offensive disease that has spread to her stomach, ovaries, adrenal gland, and lymph nodes. Why would the organization that is virtually synonymous with breast cancer choose to erase rather than confront the very thing they say they are committed to curing? It is chilling to consider the answer to that question as it is to know that Kelly was, this March, beginning her seventh chemotherapy regime, not knowing if the right research is being funded right now to figure out what caused breast cancer to metastasize to other places on her young body.

It is maddening and unacceptable to have made so little progress towards eradicating this scourge of our time. Research should be targeted, differentiated, and funded appropriately. According to METAvivor’s website, 90% of cancer deaths result from Stage IV cancer, but only 2% of research funding is devoted to StageIV.* The website goes on to explain that this is not a “rare” disease; 30% of breast cancer patients will progress to stage IV. In light of this, METAVivor has an urgent request: “30% for 30%”: We believe that since 30% of breast cancer patients metastasize, 30% of breast cancer research funds should go toward MBC research.” Surely the time has come, especially in this election year, for us to exert pressure on those who can to make decisions that will affect the flow of money and the right kind of attention, the research that would matter to those with Stage IV cancer and those at risk of Metastatic Breast Cancer.  

As for me, what will I do? Someone once said that the little difference each of us makes can make all the difference in the world to someone else. So I will keep doing my homework until I master Twitter.  I will keep doing my homework to learn how I can help change the conversation about cancer in America – sooner not later.  Now, it would be less than true if I didn’t say I’m scared. Really scared. Most days. I am afraid that the cancer that was removed along with my breast, will reappear in my bones or my brain or my liver. That it will sneakily take up residence in a vital organ. So every little headache is a warning bell, every twinge in my left hip is a harbinger of disease. The series of appointments with oncologists, plastic surgeons, breast surgeons is unsettling. Scribbled in a planner, the dates remind me that my life has been forever altered by breast cancer. I suppose I am doing just fine. I’ve even been told I look just like myself, that God would never give me more than I can handle, and admonished to put my “big girl pants on.” The thing is that those tests and scans shocked me once, and I have prepared a little space inside to be shocked once again.

I should know that living in fear is no way to live.  Growing up in Northern Ireland during the Troubles, I learned early on that you can’t not go outside for fear of being blown up by terrorists. You can’t succumb to that fear otherwise you’ll never go outside. So I will continue my education about this cancer that has changed my life. I will continue to reach out to people like the bold and brilliant Dr. Attai, Jody Schroger, and Alicia Stales who moderatethe #BCSM Tweetchat.

Today, it is no surprise to read about what Liz Scabo describes as a  social movement in USA TODAY. The weekly Tweetchat has often been my soft place to fall when I have been unable to find answers anywhere else. So, as Breast Cancer Awareness Month winds down and the pink ribbon products make way for Thanksgiving decor and Christmas decorations, I will do what I can to increase awareness for and traffic to METAVivor where others can learn more about Kelly’s disease, the disease Komen apparently didn’t want anyone else to see at their luncheon. Between all those who blog and tweet, I’m convinced we can create an online revolution that will thrust metastatic cancer into the forefront of a conversation that should be taking place on the national stage. Very soon.

Metastatic breast cancer matters. 

 ** For general information about METAVivor, please contact “CJ” (Dian) Corneliussen-James at cj77@comcast.net

* See CJ’s comment below

 

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