Excuse the Dust

It’s been a number of months since I was last able to post – about which I’m both sorry and personally bummed. But hopefully I’m back! I travelled to Lisbon (and Paris) back in early November (a report about the conference and my poster are long past due) but my trip ended up being a bit of a mess. Thanks to treatment side effects, but the time I landed in Lisbon the soles of my feet were covered in layers of blisters and even a week later when I left Paris I could just barely hobble on the cobbles. It’s been a roller coaster ever since, so here’s a quick update: More

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Miss You Already…. (Spoilers)

Since I first came to hear and understand the challenges of living with metastatic breast cancer (MBC), the most central theme has been awareness. From accurate and specific awareness can flow better reserach, greater understanding, expanded support, and so much more. But without true awareness of the complex and weighty challenges faced by MBC patients, the world can hide behind pink and patients remain in the closet. 

Enter Miss You Already, a soon-to-be-released film by director Catherine Hardwicke and staring Drew Barrymore and Toni Collette. I think it’s a MUST SEE – not just for breast cancer patients, but for everyone…. 

Miss You Already tells the story of best friends – one unable to get pregnant, the other a mother of two young children diagnosed with TNBC which eventually spreads to her brain. We can all surmise the ending.

As we, the MBC community, focus our efforts on reaching well beyond our own numbers and our inner circles, sitting at the heart of a big screen Hollywood movie is a critical opportunity to help the public understand what it’s like from our side. And there was every chance it could have been a diaster, with more pink fluff, more happy endings, more sugar-coated bullshit. It’s not that, not at all!

In the years I have been dealing with MBC, I’ve never before felt that my story was being told. This time, it’s exactly my story – evidence that we are being heard, noticed, at last. Like Toni Collette’s character, I was first diagnosed as a young mother. I expereinced similar strainded relationships, discomfort, the idiosyncrasies and ironies, the profound ways it changes your life and your relationships, and the fight to find the “new normal.” Writer, director, actors – they have undertaken an incredible effort to remain true to the patient experience, and they have executed it brilliantly. 

Is it perfect? No…but it addresses countless minutia that could only be familiar to those who have walked in our shoes. I am honored to have been invited to preview the film, and hope you will check it out!

Opening Thursday at a theater near you…I give it 5 Kleneexs. Let’s see if we can give it a stronger opening than 007!

Video

NaBloPoMo 4: The Gift of Time

That coveted extra hour of sleep that comes each fall! I always have such high expectations. And like today, they are usually dashed. It was especially frustrating since the focus of my thinking between midnight and 2 AM, when I finally fell back asleep, was “at least I can sleep in…” Yeah, that didn’t happen.

We all want more time…more years in our life, more hours in our day. And it seems to me the more “convenient” our electronics make life, the more we try to cram in to each hour, and the more time we need. I am busier and with less “down time” than ever, and I know I’m not alone. I also know this probably isn’t good for me, or any of us. Demands are greater, attention spans are shorter and frustrations come more easily. Oh, but if we just had more hours in a day…

Judaism has the antidote for this. Our sabbath (Shabbat) begins at sundown on Friday, and we set the tone by lighting candles and reciting blessing for every-day things that we might otherwise take for granted. Once the candles are lit traditional limits our activities quite dramatically. Jewish law says that, just as God rested on the seventh day, we too must refrain from work. There are thousands of years of thought on what “work” means but here are some highlights: we can’t write, we can’t carry things (including money), we can’t create things and hardest of all in today’s electronic age – we can’t spark a flame. That means we can’t turn on a light, or a television; use a computer, or a cell phone. We can, however, read a book, visit with friends, play games with the kids, join our community in synagogue, go for long walks…

Of course not everyone (myself included) follows all of these rules, though many strive to. 

But here’s the great irony – you know that extra hour? In Judaism it comes every week. Shabbat is a 25-hour day, since it ends about an hour after sunset on Saturday. And while I may not be strictly observance of how I use this day of rest, the message that my extra hour goes here, when I should be tending to myself and my family, rather than when I am running errands or at the office.

So if YOU had an extra hour, and hour set apart, defined by different rules – an hour not about getting things done, but about slowing down and just being, how would you use it?

As seen at ASCO

“If you’re a mouse with cancer it’s been nothing but good news since 1960!”

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