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!

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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

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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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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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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Of Triage and Harvest Moons

20130919-185714.jpgThings have been rough lately. Very rough. As a family we seem to be going through one of those periods in life when, if you aren’t mired in it, you marvel that in can be endured. Each of us is facing big things. Big life things. Things that, if they stood alone, would be crisis enough. When they come together, you either have to laugh or cry, because it hardly seems possible to keep putting one foot in front of the next.

I’ve done my share of crying. Alone at night. On the kitchen floor. In the bathroom when it has been the only escape. Most bouts of tears have been triggered by little things – nothing in the house for dinner type stuff. Stuff I would typically use as an excuse to go out. And I could have this time too. Except I know the stress needs an outlet, the tears must flow and carry their load and toxins away. And sometimes you just need the small things to get them started.

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NaBloPoMo 19: Food, Glorious Food

http://browndresswithwhitedots.tumblr.com/It’s scan day, about which I will probably write more later. By way of distraction I offer this (despite the protestations of my rumbling stomach):

I think I could live on just four things: bread, cheese, olives and wine. To be sure, I love food. But those things alone could be enough! Food, however, is incomplete unless it is shared. Whether family or friends, cooking for or with, a full table and a full stomach make for a full life. Food nourishes both body and soul…

Food is also communal, and I love both the slow foods and communal table movements now in vogue. I enjoy breaking bread with friends, and even arranged to a seat at the end of my kitchen counter so that someone can keep me company (and keep my wine glass full) over cheese, olives, humus, or guac while I prepare dinner.

On the cusp of the mother of all food holidays, share what do you love about food? A favorite recipe or Thanksgiving dish? A favorite setting? What about food is glorious for you?

NaBloPoMo 5: Choose Life

You have to give up the life you planned to find the life that is waiting for you.                  –Joseph Campbell

My son is looking at high schools. In a city like Los Angeles and a district like LA Unified, it is a daunting task. So on Friday morning I found myself in a vibrant, rich and exciting classroom at the Humanities Magnet at Cleveland High School. A program with an integrated curriculum of literature, history, philosophy and art history, the classroom walls, and even ceiling, serve as blank canvas for student embellishment. It was beautiful. Perusing the student murals, I came upon Campbell’s quote. I was struck by its simple truth.

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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