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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Vast Study Casts Doubts on Value of Mammograms – NYTimes.com

Vast Study Casts Doubts on Value of Mammograms – NYTimes.com.

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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When Favorite Brands Go to the Dark Side

WacoalThe issue first came up a couple of years ago, actually, but I really didn’t have time to deal with it then. It was just weeks before my son’s bar mitzvah and I was in dire need of a pair of black jeans. I headed to the store, tried on half a dozen pair hoping to find one that would not require tailoring (yeah, right) and choose one. Phew!

As I sat in the dressing room waiting for the tailor to pin the jeans I saw it. It had actually been tucked in a back pocket so I missed it at first. The tag. NYDJ had jumped onto the pink bandwagon and become a Komen supporter. Ouch.

Don’t tell anyone, but I bought the jeans.

Fast forward. I’ve been inundated with work – professional and volunteer – and trying desperately to catch up lately. (It’s one of a few reasons I haven’t been blogging much, so thanks for your understanding). Well, as luck would have it, tonight I finished a major project and I wanted to kicked back!

Hello, RealSimple. Just me, the couch and the glossy pages ripe and ready to get me ready for fall. Yahoo!

Flipping through the fall fashion pages, page 81 to be exact, BAM! Wacol has a full page, pink ad. That’s fine, no worries. Until I read the small print: Wacoal is a proud sponsor of Susan G. Komen. My condolences, Wacoal, but Susan is dead, and I will venture to guess YOU are sponsoring Susan G. Komen for the Cure, and THEY are not one of my favorite charities.

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Who Owns Our Genes?

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Such was the case heard at the Supreme Court this morning. I was honored to be asked to speak by rally organizer Breast Cancer Action. My remarks are here:

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The Antidote to Myriad & More

This is very much not my style! I like to do my research, make sure I’ve evaluated all angles, shore up the details, and THEN dive in with both feet. But today I don’t have time for that!

Last night my husband’s colleague Bonnie pulled me aside at dinner to tell me about an article she’d read in the local law journal. The room was crowded and I knew I wasn’t going to “get it” and so she offered to send me it to me. It just arrived. TWO amazing gifts from ONE amazing company: VIRATECH.

(Now, let’s hope that in my rush to share I don’t get this all wrong…)

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Cleaning out the Cobwebs

I must admit, I have been neglectful of late and it’s gotten a bit dusty around here. As it is wont to do, life took over. The cobwebs aren’t just virtual, though – they are metaphorical as well; it’s pretty dang dusty inside me head of late! So here’s a quick update of what’s been keeping me busy:

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The Antidote to Pink Fatigue

© Pam Stephan

October tends to be a stressful month for me. School is back in full swing with a panoply of activities requiring my chauffer skills. My program year at work begins in earnest, interrupted – good and bad – by a series of holidays. While I enjoy the celebration, the office closures don’t seem to change the work demands.

And then there is PINK.

It’s hard to explain why, as a women living with metastatic breast cancer, I don’t jump on the pink bandwagon.

It supports me, right? Well, no. Wrong. Remarkably wrong.

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I Want You To Know…

20121024-144852.jpgI have been neglecting this blog, and the list of posts I intend to write is growing rapidly. There’s some pink fatigue, things are busy in life, at work…and just to make sure I have no time to get into trouble, I am taking a new writing class this fall.

This past week we were asked to write on the prompt “I Want You To Know.” I am not sure why the #bcsm community was on my mind that evening, but it was very much in my thoughts as I wrote the following:

 

I want you to know that you’re not alone on this journey. It is so complicated when we begin…the cacophony of new information, advice and decisions, the pressure to make quick and vital treatment choices; the fear, the anxiety that can stop you in your tracks…you’re not alone in this.

I want you to know that the decisions you are about to make, though vitial, are ones that you can master. There are people ready to help you – to learn this new language, to answer your questions, to dig deep into the research with you, or just let you cry.

I want you to know that there are others who have walked this path before you. Women, and men, who have been where you are now. And while their paths may be different, they will intersect with yours again and again.

I want you to know that we will be here. Any day, any hour. I have lay awake at 3 AM, terrified, alone in the dark. I don’t want that for you.

I want you to know that we are here to help. This is a strong and vibrant community, and while you may not know us yet, we are committed to your survival, to your well-being, and we stand with open arms whenever you need us. I want you to know we will help protect you.

I want you to know you are not alone. We are tens of thousands strong.

I want you to know that it will be hard. You will be frightened, overwhelmed, confused. You are still not alone.

I want you to know that there is nothing you can say to scare us, or send us away. We don’t know where this journey leads…but I will be at your side, wherever it takes us.

I want you to know that cancer will not win. It will make you stronger, even if it weakens you. It will teach you to love in ways you never knew you could. It will give you insights, and power, and courage. And even if it manages to overtake your body, it will never overtake your spirit.

I want you to know that you can do this. And you will not be alone. I just want you to know…

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