People Say the Darndest Things

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Life with MBC. There is so much that is misunderstood, unclear, and even unbelievable. For those of you new to this, MBC is metastatic breast cancer, or stage IV breast cancer. Once breast cancer takes up in a distant organ it becomes deadly. It takes the lives of over 40,500 Americans each year. And even if we don’t die from it, we die with it.

I truly believe that most people are well intended, and I don’t fault them for what they don’t know. So while I know others rant about the insensitivity (because the reminders truly can hurt), I thought I’d dispel some myths and offer some better options – at least for me.

Breast cancer is curable. Really, it’s not. Let me repeat that: breast cancer is not curable. More

In Our Shoes: Raising the Voices of MBC Patients

Well, this is LONG overdue, but I’m finally feeling up to using my chemo-addled brain again! You may remember (or perhaps you never even knew) that last spring I conducted a survey of metastatic breast cancer patients. As I’m sure you’ve heard me say before, we are patients who often fall through the cracks when it comes to breast cancer advocacy. Sometimes we scare people, sometimes we don’t fit the mold, and sometimes we are forgotten – or pushed aside. As patients, we know our stories are hard ones to hear, but as so many advocates will tell you, there is no breast cancer advocacy without MBC advocacy. More

Uber Me This

IMG_0056Uber has been on my radar for at least a year – probably longer. The first time I used this crowd-sourcing, ride-sharing service was last spring, on the way to the airport with a colleague. While it was convenient and easy, I still harbored suspicions about regulations, safety and whatever other excuses cropped up. Fast forward to a girl’s night out a few months ago. We were going to a nearby “Paint and Sip,” with particular interest in the sipping. Neither of us were enthusiastic about driving – and then I remembered Uber! It was a great choice – everyone got home safe and sound. More

Why Advocate?

There are times when I feel like I spend more time on breast cancer advocacy than I did on my half time job. It’s probably true…

So in the midst of my own almost-but-not-quite stable disease, why the long nights of reading grants, long days of travel and meetings, the long talks with researchers, the long days or planning, grant-writing, networking, and whatever else quickly fills my days? 

I recently closed a study that will serve as the basis of an abstract and poster entitled “In Our Shoes” and will seek to raise the collective voices of metastatic breast cancer patients around living with our disease. One respondent’s comment about how finances impacts her family offers the best possible answer for why I do what I do. 

I also know that the sooner I die, the more money my family will have. 

#Heartbroken

Self Care?

I dread even writing the words. I resist, deny, justify, ignore, and try to learn the lesson over and over again. I had lunch with a friend recently and we were talking about my trip to Italy. I shared my realization of how much work just caring for myself canbe – walking 2-3 hours a day, getting to my writing, cooking healthy food – that’s a full time job!

“You learned this before,” she says.

Of course, she’s right. In fact, I’ve learned it many times before. And I know I’m not alone in this. Raise your hand if you are POSITIVE you would put your oxygen mask on first when sitting next to a small child…. I think I would, but at the risk of watching my child pass out, I can’t say I’m certain. Thankfully we’re past that age. We’re getting to the age where it’s more likely he’ll have to put my mask on me.

Which begs the question: Why is self care so hard? Is it a male/female thing? A motherhood thing?Why is the line between self-care and selfish blurry? Why does caring for others come naturally, but caring for ourselves require reminders and negotiations and, sometimes, very loud wake-up calls? More

Welcome Back…

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Remember me?

I know, it’s been quite some time. Again. And to the extent that I believe in resolutions, I yet again resolve to keep this blog active. The truth is, I think about it daily, but life gets in the way sometimes. So here’s a quick update about life, and a deeply sincere hope that I will find the time to hang out here more often!

I have a sort of “bucket list.” I don’t really maintain it, I couldn’t even tell you what’s on it, but there are things that I want to do before I die. So I made the stars align and planned a six-week trip to Italy. Yes, Italy. Yes, six weeks. And each day I lived the dream. I rented an apartment in Verona – a city historic enough to interest me and small enough to let me write. My goal was to make serious progress on a manuscript that has been hanging over me for years. (Mission accomplished. It’s no where near done, but progress was made!) Verona was the perfect city. The historic district is small enough to be easily walked, the sites were magnificent, and when it was time to write I didn’t feel distracted by the multitude of tourist options.

I got to “live” there for a bit. More

Enough Already…

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I don’t mean to kvetch – REALLY I don’t! I generally believe the universe is benign, that bad luck is just bad luck, that bad things happen to everyone – not just good people, and that no one is out to get me.

And yet…

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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…

TRANGST

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We’re familiar already with the term SCANXIETY – the persistent anxiety that surrounds PET, CT, Bone, MRI and whatever other scans they can throw at us. It pertains to the test itself, and to the wait — the hours or days it takes to get our results. But as I await the shipment of my new meds from the speciality pharmacy, I think we need coin a new phrase, TRANGST, perhaps? The angst that surrounds the change to any new treatment protocol, with it’s unknown side effect and unknown impact.

And that is where I sit today…

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My Color-Coded Life

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Oh the joys of computers!

When it comes to my calendar I remain a “paper” girl at heart. I still look longingly at the rows of Franklin Planner cases in my office, reflections of years past. I am far more likely to remember what I write down. But I also find that if I’m too slow (as IF that happens) or I’m too busy (moi?), paper doesn’t work. Too slow and I forget to look in my datebook. Too busy, and I need the buzzing, pop-up reminder and nagging emails that my Google calendar provides. And lately, I’m TOO busy!

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