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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Happy Tomorrow!

one_day_at_a_time_oceanAnother new year is about to roll in – time for a fresh start, resolutions and promises, leaving the past behind, beginning again, a tabula rasa. New Year’s holds the promise of change, of potential; an opportunity to wash away the old – our foibles and failures – and build something new.

Or does it?

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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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Another One Bites The Dust

So it happened, what every metastatic patient fears: the next line treatment, a reminder that metastatic cancer overcomes therapies nearly every time and that one life-extending option has been crossed off the list.

All metastatic patients know that there is a list of potential treatments, each in due course. At some point the current treatment will stop working and we will move on to the next one. We live with the hope that research will move fast enough to keep something on our list.

My new therapy may last a year or it could last ten. I will only know when it ceases to work. Everyone seems to love my new drug. And while it is two large needles and a very slow injection every month, it has the added advantage of not having to remember to take a pill twice a day, which is huge. I’m told it is very well tolerated and it has a great track record of effectiveness.

I’m as optimistic is anyone can be but I serve no one if I’m not honest as well: I’m not okay that I’m one treatment down. So while I wait with hope and gratitude for all of the researchers, trial participants and doctors have brought me to this opportunity, I wait, too, with a little bit of grief for the most recent therapy crossed off my list.

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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LIVESTRONG

I mentioned in my last post that there are two things I find particularly upsetting about the Lance Armstrong affair. The first is what it means for my son to have deal with a  fallen hero. The other has to do with LIVESTRONG, an ironic name for an organization founded by a man who, in the end, lived weak.

Eight years ago my mother-in-law died of mesothelioma. She was buried with a LIVESTRONG bracelet. LIVESTRONG has been a favored charity of ours as well. Neither she nor I ever benefited directly from their services, but we believed in the work of the organization.

I do not personally believe that Armstrong’s actions reflect on the organization he founded, most especially since he has put distance between the two, presumably in hopes that his good works can overcome his exceedingly poor judgement. I believe we can only condem LIVESTRONG based on its own actions, even as I believe it would be wise for LIVESTRONG to continue to grow the distance between itself and Armstrong.

Here’s my issue: I, along with many others in the breast cancer blogosphere, have called a number of cancer non-profits to task. Komen, NBCC and others have been reviewed critically. As they should be.

But it occurs to me that I’ve not heard much in that regard when it comes to LIVESTRONG, which begs the question: has LIVESTRONG been exempt from scrutiny because of their affiliation with an American hero?

I honestly don’t know, but I speculate that all the “feel good” around both the man and the organization may have clouded our vision. That’s not to say LIVESTRONG‘s reputation is unworthy, or that it is anything short of the wonderful organization it purports to be. Only that a close look is in order. If they are clear in their mission, true in their leadership and  appropriate in their spending, I imagine a careful look would serve them well.

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

Bah, Humbug?

It’s the holidays, and I’m weary. I am generally quite successful at living in the moment, savoring the day, embracing what life has to offer, most especially around the holidays, when the world if filled with good cheer and egg nog. (OK, I’m kidding about that…I’ve never had egg nog.)

But right now I’m weary…

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NaBloPoMo 3: Now What?

Photo credit: femerall.wordpress.com

The “on one foot” version for anyone new to my blog: In February I will be an 11-year breast cancer survivor. Three years ago this month my CA 15.3 tumor marker (a controversial blood test used as part of my follow-up studies) started rising. And just over a year ago my cancer showed up in my bone marrow. I now have incurable, metastatic breast cancer.

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