The Measure of Time

CalendarLast week saw yet another CT scan and, unfortunately, some progression: albeit slowly, my cancer is growing again. And so I am now looking at my third-line treatment. I must admit, its all a little surreal. I was going to be that girl who got years on each successive therapy, denying to odds and beating down the doors of a ripe old age. Strike that – I AM going to be that girl, just not the way I planned.

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#BCNext

We are constantly confronted by “breast cancer marketing,” the barrage of pink, from funding free mammograms and research, to supporting individuals with cancer, some of whom can’t even afford child care and transportation to treatment. We range from those with strong family histories, whether BRCA positive or not, to those enduring treatment, to long-time survivors with metastatic breast cancer, to those we have loved and lost. We are each the face of breast cancer.

In America, and I presume elsewhere, there is a great divide between those of us on the ground, living with and dying from cancer – and the other side of breast cancer, those who make funding decisions and allocations of both donated and allocated dollars, private, public and NGO.

If you could have their ear for a moment, if you could tell them what YOU think, what YOU see, what YOUR breast cancer priority is? What if your voice, combined with others like you, like me, could help influence our future?

Comment below or tweet to #BCNext to join the dialogue and spread the word! Let your voice ring out!

Laugh Out Loud

LOL

Holiday insanity got you down?

Need a laugh?

I have just the thing…. More

Our Seat at the Table

seat-at-the-tableThis is going to be one of those posts that’s going to get me in hot water. That’s ok – I’ve been there before!

This week is the annual San Antonio Breast Cancer Symposium, perhaps the largest and most noteworthy of them all from which emanates some of the biggest Breast Cancer headlines. The magnificent Alamo Breast Cancer Foundation provides a truly INCREDIBLE service to advocates (even above and beyond their scholarship program) by bringing together top people to summarize the day’s headlines. Tonight’s “mentor session” was live-streamed thanks to Dr. Jay K. Harness at BreastCancerAnswers.com.

As always the presentations and questions were outstanding. One sparked a little discussion in the twitter feed.

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I find it interesting that the patient track at breast cancer medical conferences always seems to start before the conference. So it was yesterday, when Novartis kicked-off the patient conversation. I am guessing about 60 of us, patients and advocates, representing 20 or more countries, met to learn more about living with metastatic breast cancer, and to talk about the challenges.

Novartis supported the international Count Us, Know Us, Join Us study (n=1273). It was fitting to share the results, such as they were, at the Advanced Breast Cancer Second International Consensus Conference, since in some way the need to count us was on the table two years ago when the conference launched.

This online, global study sought to explore the unmet needs and attitudes of metastatic (or advanced or secondary or Stage IV breast cancer patients) in an effort to identify gaps in information and support:

40% of MBC patients feel isolated.
77% are out there trying to find information.
55% feel that the information they find doesn’t meet their needs.
45% feel finding the right information is difficult.

In terms of support, 80% get what they need (I speculate that they are confusing need and expect, but who am I to judge?) from their oncologist, but most find that support from friends and family wanes over time.

No surprises for those of us living with the disease, and there was lots more. Each geographic region gave a localized report about this or other surveys that have been conducted. You can find results on the Count Us, Know Us, Join Us website.

While is seems that everyone is interested in us, remarkably, they actually haven’t counted us. Seriously. We don’t have global, or even local numbers and we don’t have registries (except in Switzerland) that track mets-specific diagnoses. And as MBCN President Shirley Mertz put so well,

“If you don’t count it, it doesn’t matter to you.”

Any wonder some of us feel isolated? Lots of work to be done here!!

After a series of briefings about the “on the ground” experiences and “best practices” from across the globe, we meet in regional teams to begin the work of tackling the challenges we each face. It was a wonderful opportunity to connect with other patients and advocates and be infused with new ideas. There is no question the task is great, nor that each region faces its distinct challenges, but there is more overlap than not. Here is the summary I presented on behalf of the US/Canada team:

What We Need

  • Influence legislators to ensure research funding
  • Increase percent of research dollars allocated to MBC-specific studies
  • Change approach of health care professionals to be more “realistic”
  • Insure patient access to information and support
  • Organizational collaboration
  • Breast Cancer on a spectrum (previvor – metastatic)

How We Get There

  • Global Day of Action
  • Continued Advocacy
  • Adapt registries to account for (subsequent) mets diagnoses
  • Pink ribbon needs to be longer, gradations of pink

All in all a very productive 1/2 day, but as usually I find the follow-up steps lacking. What we do with our ideas, how they become actionable, where the support might come from? We don’t ever seem to get to that part of the conversation. :-(.

In all the thinking I’ve done about advocacy in general, I find this to be a core challenge. It’s one thing to bring information and contacts back to your organization for future reference, but perhaps because I don’t have a single “home” organization, perhaps because I haven’t started my own non-profit to cover my one little corner of identified needs, I don’t think this is enough. I wonder what happens in the big picture and I worry about how many brilliant ideas get lost when we return home and the luster begins to fade…

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The Sound of Silence and Why I Do What I Do

I was recently in a room of about 20 breast cancer survivors/thrivers/veterans. As we moved through the room with introductions each woman announced how many years it had been since her diagnosis, almost invariably in terms of how many years she was “cancer free.” 8 years, 12 years, 6 months, 5 years, over 20 years… Woman after woman was met with applause.

When it was my turn I shared that I was initially diagnosed in 2002. (P.S. That would give me 11 years of survivorship and put me comfortably in the upper half of longevity.) I went on to say I’ve had metastatic disease for nearly two years.

Not a sound, save the weight of my words dropping to the ground with a thud. No applause. No support.

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Beating a Dead Horse

For most of us the days of being told how to live our cancer journey fell away when our treatments were over. Gone are the frustrating moments when well-meaning friends and strangers at Starbucks offer remedies, alternative therapies, and all manner of unsolicited advice.

But when you have mets, those opportunities keep on giving, until – well, until the treatment ends, and we all know when that is. Never.

So you can imagine my frustration by the wave of Good Samaritans, breast cancer survivors all, who seem to think that because they once had early stage breast cancer they are in a position to advise me about mine.

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Be Heard: Send a Text to Congress – Rally for Medical Research

 

Be Heard: Send a Text to Congress – Rally for Medical Research

Medical Research saves lives – including mine, and probably yours.

Sequestration has halted a great deal of research, and may cause us to lose a generation of researchers.

PLEASE click above and let your Congress Members know what you think!

Can You Hear Me Now? An Open Letter to NBCC

An email today from Sharon Ford Watkins of the National Breast Cancer Coalition is requesting input on defining the 2013 Legislative and Public Policy priorities. The fact that they are asking the “masses” what we think is a good thing. The fact that the “masses” have not yet been heard on the topic of metastatic breast cancer – not so good. Below you will find my response to their request.

Dear Sharon,

You don’t know me, but I have been an eager and vocal supporter of NBCC for the last four years or so. As soon as I had learned about NBCC I knew I had found an organization that “got it” and a place where my voice would reach much further and deeper than it ever could on my own.

When Deadline 2020 was launched I, along with so many others, stood with NBCC in supporting and even justifying the strategy. As a LEAD graduate, both my advocacy and my own healthcare have benefited from what you have taught me. With the skills and encouragement found at the annual Advocacy Summit I have launched a blog, served on peer review with the Department of Defense, attended the 33rd San Antonio Breast Cancer symposium, and found a place for myself in a variety of specific breast cancer communities/organizations. I know my annual membership and limited monthly contribution cannot begin to cover your investment in me. For all of this, I thank you.

But…

I was devastated by the email you sent today requesting feedback on Legislative and Public Policy priorities for the coming year. In it you state:

As you know, in 2010, NBCC set a deadline and developed a strategic plan to end breast cancer by 2020. The plan focuses on primary prevention, stopping women from getting breast cancer, and understanding and preventing metastasis (the spread of cancer), which is responsible for 90% of breast cancer deaths. Recommendations for 2013 should take into account how the proposed priority moves our plan towards meeting the overall goal of Breast Cancer Deadline 2020—ending breast cancer by January 1, 2020.  (Emphasis mine)

I have spoken out on this matter before (Life on the Margins) and I thought in the past year we had seen improvement, but this was a major slide backwards; one that has me on the edge of withdrawing my support in shame.

As you state in your own email, metastatic breast cancer is responsible for 90% of breast cancer deaths. (One might argue that number is even higher…) You also share that your “plan” focuses on the prevention of mets. A lofty and worthy goal, to be sure. And a goal that leaves the estimated 162,000 of us living with mets in the dirt, trampled by the stampede of sexier topics like the Artemis vaccine. Your  recurring choice to focus on the prevention of metastatic breast cancer quite simply writes off our lives.

Part of what drew me to NBCC was my sense that priorities were set based on science, on objective need not impulsive topics that “sell.” Part of what will send me away is to see you sell you like so many other breast cancer organizations have. Please, Sharon, don’t allow NBCC to douse itself in the same pink rhetoric we see everywhere. Women die from mets; let’s focus our attention on the real issue at hand. Let’s tackle what kills us…

Sincerely,

Lori Marx-Rubiner

TAMOXIFEN UPDATE: Everyone Take A Breath, Not More Pills

Since I don’t think I could have said it any better, I have stolen (with permission) the post below from the always-amazing AnneMarie.

Yesterday, I had front row seats to see what happens when a story hits the media during a slow news cycle. People are tired of hearing about the fiscal cliff which I prefer to call by its “formal name.” Does anyone recall the word? Correct!

S-E-Q-U-E-S-T-R-A-T-I-O-N

No matter. It seems we are ready to hang glide but I’ve been too busy running around a two square block area in San Antonio to pay much attention to any news.

San Antonio is lovely. The Riverwalk is charming. San Antonio is bustling. There are researchers and clinicians and all sorts of folks in the breast cancer arena, from all over the globe, in that same two square blocks.

I am here as a patient advocate sponsored by the Alamo Breast Cancer Foundation. We are a group of 31 advocates and we are a busy bunch. Yesterday, the day began at 6:15AM. Breakfast seminar. Then, presentations. Then, more presentations through lunch followed by an interview. (There will be a video posted on the ABCF website and IF I don’t look like a fool, I’ll be sure to share!) Then, a wrap up session on the official presentations and finally, a dinner seminar hosted by Novartis. The day ended at 10PM. Today will be the same. Ditto tomorrow.

This medical symposium is THE event for presentation of the latest in breast cancer research. Each paper gets presented in a 15 minute time slot. Perfect for a chemobrain! Not a chance of getting distracted. If I glance away from the screen for a second, they’ve already moved to the next slide. Yesterday, there was “Big News” expected. It was “The News” for this 35th Annual Symposium. More

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