In the Midst of Silence

Between “moment of silence” and “prevention of cancer from spreading,” exists the land of the forgotten. Who resides there? Those for whom I am a #FearlessFriend, those hoping their names will not be mentioned with the former, and, yes, those who have already been kicked out of the ranks of the latter. Their cancer has already spread. Where do they fit into the current breast cancer paradigm? Do they fit in at all?

We talk about early detection, we talk about attempting to understanding the cause, we talk about finding ways to stop an early stage cancer from recurring, we talk about finding ways to prevent metastasis. Aren’t we forgetting something? This glaring omission is really quite disturbing on the low end of the rage meter. On the higher end, it’s positively disgraceful and absolutely disgusting. Who is discussing those already diagnosed with distant recurrences? Where are the Stage IV patients?

When we visit the emergency room, there is a pecking order. The clumsy idiot who managed to deeply gash my finger with a butter knife waits. And yes, I really did that the other day and NO, I did not go to the emergency room despite the fact I’m sure this cut should have been stitched. The guy who comes in clutching his chest is brought right in and hooked up to a machine to be monitored. The person whose ambulance is greeted by the ER doctors goes right to the head of the line. (Although I’ve only seen that on Grey’s Anatomy, the meeting of the ambulance by the ER docs all suited up, you get my point?) We triage. We treat people based upon the urgency of their problem.

Why are we not prioritizing breast cancer research based on this urgency? Where is the triage? There are plenty of people who will find ways to argue statistics. There are those who take exception when the number of breast cancer deaths is cited. I’m not sure I understand why this is an issue for some, but I recall a conversation wherein someone indicated they didn’t agree with its use. Statistics can be skewed, but cold, hard, tangible numbers are simply numbers. And 40,000 is quite an enormous number. The number of lives being taken in this country each year remains, for all intents and purposes, unchanged.

That’s not okay with me, and it should not be okay with you either. While I’m ill-equipped to quote numbers or analyze statistics, as I could in my pre-cancer life, I do know that the number of those living with metastatic disease extends WELL BEYOND the 40,000 who will die. How many are living with the disease and are suffering daily from the fallout of the drugs that are keeping them alive? How many of them are okay for today, but truly live with one eye constantly glancing over their shoulder, knowing the disease has taken up residence outside their breast? They are terminal. Not chronically ill. Terminal. The vast majority WILL die from breast cancer or from the futile and toxic attempts made to treat the cancer.

If we are brave enough, we rally to their side as they lay dying. We speak their names with reverence after they are gone. We do things to memorialize them after they have died. Whether we walk with their names boldly written across our backs or we send money to a charity, we do plenty after the fact. That’s not okay with me, and I don’t want it to be okay with you, either. We should be standing shoulder to shoulder with them while they are alive.

For too many years, indeed since the pink ribbon turned breast cancer into the poster child of all cancers — and I’d argue, too, the most recognizable disease around the globe — those with stage IV breast cancer have become an inconvenience. Their presence is a stain on that ribbon. The reality that is metastatic breast cancer is bad for business. The Stage IV’s are ruining the whole gig. They don’t fit the image of hope and success and survival consistent with the message that ribbon has come to signify.

They are ignored. Just like those who jumped to their deaths from the World Trade Center on September 11 were not spoken of, we go out of our way to maintain our silence about those afflicted with metastatic disease. If little coverage was afforded to the jumpers, we could pretend they did not exist. But, they did exist. And their numbers were far greater than we will ever know. Their stories are too horrifying. The manner in which they died is too unimaginable for us to accept.

Similarly, if we pretend no one resides in that place between the “moment of silence” and the “prevention of distant metastasis,” we can ignore the existence of those whose lives we have become all too willing to sacrifice. They are not an inconvenience. They are not a stain on the ribbon. They are our sisters and our brothers. They are counting on us to make sure they are not buried beneath that ribbon. They are counting on us to make sure their voices are heard. They are counting on us to insist they are the ones who are treated first. They are counting on us, as they count their days, their weeks, their months, acutely aware that the hands of time are moving far more quickly for them than for the rest of us.

They are my priority. THEY are my cause. First, we save their lives.

I am and I shall remain a #Fearless Friend.

Everything else can wait. Because nothing else is more important.

~ AnneMarie


AnneMarie writes fearlessly and passionately at her blog Chemobrain. Her latest post echoes this one: What Can You Do?? Okay…Then Do It!!

Related links:

Trying to Stay Alive on Two Percent
Thirty Percent for Thirty Percent

Share

Thirty For Thirty

It’s Personal

About a year-and-a-half ago, at the end of 2010, I became friends in cyberspace with a blogger named Rachel. She had left an endearing comment on my blog, for a post that was not directly about breast cancer, as it happened, but about losing my 15-year-old dog, Foxy. That post was called Foxy’s Tale – Chapter Two. As is true for many of us, my pets were a constant source of comfort, unalloyed love, and joy during my treatment for breast cancer. What made Foxy so special to me was that he showed up in my life as a frightened, half-wild stray, and, despite his understandable terror, arising from a background of abuse and neglect, he chose to stay with me, to trust me to care for him and treat him with kindness. He rewarded me with love and loyalty, and taught me many lessons in how to face fear, lessons I would need when I was diagnosed.

I was touched that this woman I didn’t know would comment so warmly. It turned out that Rachel had a dog herself, who helped her through her own experience with breast cancer. We soon discovered how much we had in common, how many of the same things made us cry and laugh. I also discovered that Rachel had been diagnosed with breast cancer in her thirties, that her cancer had returned a few years later, and that she had developed metastatic breast cancer.

Rachel and I became fast friends in cyberspace, and not many months later, we became friends in real life, too, meeting up at a National Breast Cancer Coalition conference. We were then able to add several layers to our friendship — phone calls, Skype conversations, texts and emails, and mutual conspiring on our respective blogs. I had already lost friends to MBC by the time I’d met Rachel, but she and her blog raised my awareness of it exponentially. Back in February of 2011, she asked our own CJ to write a guest post about one of Rachel’s most passionate concerns — the urgent need for more research on MBC. That post, Trying To Stay Alive On Two Percent, was widely read and widely shared. And it spurred me and many other bloggers and activists to demand more accountability, reality, and parity for MBC in fundraising, awareness, support services and research.

Several times during 2011, after our first meeting, Rachel and I tried to figure out when I might drive down to visit her. We were only hours away from one another by car. But the ever-present, ever-changing circumstances of MBC always seemed to get in our way. There were multiple hospitalizations, more chemotherapy, more pain, more side effects, pericardial infection, collapsed lungs, disability, body-slamming fatigue, an endless list of miseries that Rachel had to endure to stay alive. She didn’t want me to visit her when she was at her worst. She wanted me to visit when she was well enough to enjoy herself, to laugh, snark, play together, and, of course, eat chocolate. And who can blame her?

Finally, near the end of last year, Rachel decided that, mets be damned, she was going to plan a weekend when a small group of her friends could come and visit. And we settled on the second weekend in March, 2012. Donations of pie and chocolate notwithstanding, Rachel decided to have our meals taken care of by a local caterer. All of us arranged for time off and transport. One of us was flying over from England. But shortly after we were finalizing our plans, Rachel was hospitalized again, this time in ICU. She was having monstrous headaches and seizures. She couldn’t eat. She was in and out of consciousness. Finally, at the end of the week, she was stabilized and was allowed to move to a regular room. She was awake, her pain was under control, and she was eating. We were all cautiously relieved, having seen her pull through so many previous crises. But a few days later, on Monday, February 6, 2012, her husband told us all that Rachel had died. And instead of driving to a weekend of fun and camaradery amidst a group of joyful friends, I drove to her memorial service to deliver a eulogy. It was just one among many on that shattering day.

Thirty Percent for Thirty Percent

Despite the hundreds of breast cancer awareness groups out there, it continues to come as a shock to many that up to 30% of the women and men diagnosed with breast cancer will develop MBC. And that 30% does not include the 6-10% of patients who initially present at stage IV. Even worse, it is beyond shocking that only 2% of all research funding for cancer is spent directly on learning to stop Stage IV cancers. There is still no such thing as genuine ‘prevention’ for breast cancer. At best, there is only early detection. And yet many breast cancer organizations still tout prevention as if it were a reality. As recently as last month, reports were published on a vaccine that promises to prevent breast cancer recurrence of HER2-positive tumors [http://news.health.com/2012/04/02/early-study-hints-that-breast-cancer-vaccine-might-work/], but this is far from real prevention for all breast cancer. The National Cancer Institute does list several clinical trials for breast cancer vaccines, some of which, I’m glad to say, are aimed at metastatic breast cancer. But the path from clinical trials to available, effective treatment may be years long, and come too late for many.

Meanwhile, we have a long way to go. One thing we can do, starting today, is to demand parity for MBC in all aspects of breast cancer support, treatment and research. That is what METAvivor’s “Thirty for Thirty” campaign is all about. Right now, you can help in a concrete way by voting for METAvivor in PinkWell’s current grant challenge. Between now and May 15th, you can vote by email, by signing in with your Facebook or Twitter ID, or all three, every single day, to give METAvivor a chance to win a grant of up to $145,000, which we can then award to research on MBC. If you would like to post our Thirty For Thirty badge on your blog or website, the image link is http://accidentalamazon.com/metavivor/VoteButton.jpg and the link for PinkWell is http://www.pinkwell.org/voting/#applicant-96. You can then copy and paste them, and link the image with the PinkWell link to vote for METAvivor.

Whatever you can do, it will be appreciated. I miss Rachel. And Elizabeth, and Deb, and Betsy, and Daria, and Susan, and Nicki, and Jane, and too many more. I’m voting for them and for all of us.

~ Kathi

Share

Welcome!

Welcome to the METAvivor Blog. We are excited about providing an opportunity to share and discuss issues that affect people with metastatic breast cancer in more depth. We plan to invite posts from those living with MBC, as well as from clinicians, researchers, activists, authors, and breast cancer bloggers who do not have mets themselves, but who support those who do by being ‘fearless friends,’ or who are involved in careers to extend life and/or improve quality of life for the MBC community. Far too often, individuals with MBC experience isolation, especially from the so-called breast cancer awareness culture at large. We want to change that. The only way to make real progress, to advance real awareness, is for all of us to work together.

When any of us is diagnosed with breast cancer, one of our first visceral reactions is fear. And there is a good reason for that. Close to a third of those of us who are diagnosed with invasive breast cancer will develop MBC. Even for those first diagnosed with DCIS, non-invasive breast cancer, up to 10% will develop invasive breast cancer, and that 10% will then be at a 30% risk for developing MBC. And yet, only a miniscule percentage of research funding goes toward finding effective treatment, prevention and cures for metastatic breast cancer.

Meanwhile, even though our universal gut reaction to breast cancer may acknowledge its deadliness, public perceptions about breast cancer do not reflect reality. Too many myths continue to be espoused, including the move in some medical circles to start referring to patient care for MBC as ‘chronic disease management.’ While effective treatment may manage the symptoms and spread of MBC, the chronic disease model may mislead many into thinking that it is no longer as deadly as it is. The bottom line is that there is still no cure for metastatic breast cancer. And myths continue to abound.

From our main website, METAvivor.org:

  • Myth: Research funding is well balanced for all stages of cancer.
    Reality: 90% of cancer deaths result from stage IV cancer, but only 2% of research funds are devoted to stage IV. In the case of metastatic breast cancer, 100% of deaths result from stage IV, yet still only about 2% of research funds are devoted to stage IV.
  • Myth: Metastatic breast cancer is rare.
    Reality: 30% of breast cancer patients progress to stage IV. Many more initially present with metastatic breast cancer.
  • Myth: Healthy lifestyles, timely screening and early detection prevent metastasis.
    Reality: Metastasis happens despite vigilance and precautions. Even Stage 0 and Stage I patients can and do metastasize.
  • Myth: Metastatic breast cancer is becoming a chronic disease. Fewer die every year.
    Reality: New treatments extend life for some, but survival remains elusive. The median survival after diagnosis has hovered around two-to-three years for more than two decades. And over 40,000 women and men have been dying annually since 1987.
  • Myth: Stage IV breast cancer patients are well supported by many groups.
    Reality: Far too many patients must face their challenges with little to no support. Most programs focus on wellness and recovery, avoiding any reference to stage IV.

Here is a link to an article by Dian M. Corneliussen-James, known as ‘CJ,’ who founded METAvivor.org, making the case for changing the breast cancer conversation — and the funding for treatment and research — to reflect these realities. 30 Percent for 30 Percent.

Whether we have mets or not, none of us can afford to feel safe or comfortable with the status quo. That 30% has included too many of our friends, and it could end up including any one of us. We hope you will join the conversation that may someday change that.

If you’d like to add your voice to this crucial conversation, please comment below, contact us at kk@metavivor-blog.com, or visit our Submissions page at Post Submissions.

~ Kathi & CJ

Share