When Faith Falters

faithFor as long as I can remember my primary identity has been grounded in Jewish community. From summer camp to youth group, that is where I first felt I belonged. So much so that I went on to minor in Judaic Studies in college and focus on Jewish Communal Service in graduate school. Most of my 25-year career has been spent serving the Jewish people, and I have always felt lucky for the chance.

While Jewish peoplehood and Jewish faith are not the same things, I’ve generally taken my faith for granted. I work in a synagogue, after all.

When I was first diagnosed with early-stage breast cancer I felt the warm embrace of both the Jewish people and the Jewish faith. My community could not have possibly been more supportive and I never bothered to think through the distinctions. My connection to them was synonymous with my connection to God. I was grateful for the many prayer groups across the county who held me close, to the strangers who would never know more than my name, but petitioned God on my behalf anyway. And our faith seemingly prevailed. Despite the unpleasantness of chemo and a long, long surgical recovery, I was “cured” and able to leave breast cancer behind me, stronger for the experience.

Today, as a metastatic patient from whom mortality cannot be hidden, I’m less sure. My faith’s teachings are admittedly vague on the subject on afterlife, favoring a focus on what we can and must do in this life over speculation about the next one. We have this time, it seems to say – make the most of it. Enjoy it, but do good things, too. Not because you’ll get credit for it later, but because it’s the right way to be. So after all these years of serving the Jewish community, of trying to do good things, what’s left? I understand I may not die of breast cancer, but I will unquestionably die with it. And as each treatment fails me, my faith is a bit more compromised.

Are God and heaven and hell just human constructs designed to make us feel better, safer, about the mystery that is dying? Are they real in the absence of evidence, in the same way that we can’t see or capture the wind? Or perhaps they exist only for those who have faith. I don’t believe my faith will heal me, as much as I wish it could. Wonderful, saintly people have died of illness, and evil people have lived long and prospered. It’s impossible for me to believe in an interventionist God in a world like that.

Ultimately I believe, with rare exceptions that range from Hitler to the Dalai Lama (yeah, don’t see those two in the same category very often, do you?), that we mostly try to be good, and we succeed and we fail and we go on. I have friends, mostly Christian, who urge me to have faith. I understand why – from their perspective faith is the key to heaven. From mine, if there is one, it is good deeds. And I guess I believe that actions do speak louder than words…

But it begs the question of faith. As the lives of some many fellow bloggers and twitter friends are prematurely stolen from us, as my own health falters, do I have faith?

I remember when my mother in law was diagnosed with mesothelioma. In the months before she died we would have long conversations of faith. She had, once, believed in life after death, and had a notion of it being good. As her death approached however, just when she probably needed it most, her faith was gone, or at least well masked. She came to believe in nothing. I’ve always hoped in her final days, when she no longer had the strength to talk on the phone, that she found what she needed.

Which has me wondering what I need. Would this path be easier if I were a true, unquestioning believer? Would I find comfort in “knowing” what to expect after I die? Perhaps, if I could ever really move from thinking to knowing, a move the skeptic in me is likely to never make. In the end, it always takes me back to the very beginning. Within hours of being diagnosed the first time my anger at what this would mean for my loved ones burst forth. Never mind me, I’ve done bad things in my life. We all have. But to make my loved ones suffer for my actions, the unanswerable question always remained: what could Zach, at the tender age of three, have done to deserve this. That, in the end, confounds my faith; I have not found a way to put my trust in an unjust God.

I figure I have lots of time yet to work this one out…

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Third Line Therapy

Mphotoemories of another angst-filled day of sitting in bed waiting for the side effects of my first round of chemo playing tug-of-war with what I know must happen, I ask John to bring me my pills.

“The new ones?” he asks.

“I guess,” I grudgingly respond. Really, this is me? Really?

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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!

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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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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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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That’s Why I’m Here

Regular followers may have noticed that National Blog Posting Month (NaBloPoMo) nearly sucked the life out of me. I was doing GREAT right up until Thanksgiving, when I realized that the point of my being interested and/or relevant was far behind me. So I’ve had a much-needed break, and now I’m back.

But I digress…

James Taylor has always been one of my favorite singer-songwriters, but this isn’t about that either.

(At least they’ve finally confirmed that chemobrain is real!) More

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