Summertime and MBC

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It’s the time of year when I start thinking about cleaning up the back yard, heating the pool, and focusing on summer entertaining. We have a small home, so it’s our season to celebrate outside with friends.

This year I have a new plan – if anyone appears to be drowning in my pool, I’m going to focus on preventing future incidents by teaching everyone on the deck how to swim immediately! After all, the person drowning could be saved and then be hit by a bus, so she’s probably a lost cause. 

It makes sense, right? I mean, it is how we fund cancer research. We don’t focus on saving the dying – we focus on how to “prevent” the disease. Why shouldn’t that be the model how we approach other life-or-death situations? Heart attack? Have everyone within earshot has to change their diet. And pass the bowl of aspirin, stat!

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Ohm

om_ohm_aum_symbol_square_sticker_3_x_3I’ve long been one to defend the rights of all cancer patients (and everyone, for that matter) to self-identify with whatever language makes sense for them. I certainly won’t judge those who identify as victim or survivor. But I know many, many patients – especially metastatic patients – who loathe the war analogies. Yet I haven’t been able to reject them out of hand. I think, in part, because sometimes this disease does feel like a battle and that I’m fighting for my life and in part because it has become so engrained in our collective psyche that we don’t really have much to replace it with.

But during last night’s restorative yoga class, which I really wanted to skip out on, things started to make sense. Unfortunately it meant my mind was racing throughout the class, but if that leads to clarity, so be it.

I don’t know how cancer came into the studio with me, perhaps the news of a friend starting hospice and another prepared to die. In death language becomes even more important. We risk blaming the patient for not fighting hard enough or losing the battle. I know what I don’t want said about me, but I’m not sure what I do want said.

So in that yoga class…the room is dimly lit, my eyes are closed and hands open, I breathe. Breathing is good… The instructor tells us to surrender our bodies to the earth, allow gravity to pull us down and hold our weight.

Surrender…. More

Do You Know What Your Trial is Doing?

clinicaltrialClinical Trials – the path to new drugs and device approval by testing them on humans. As I’ve become increasingly involved in the research side of breast cancer advocacy, I’m often called upon to explain trials – what they are, how they work, and why they are necessary. It is, in my opinion, a critical roll played by advocates who advise researchers through the trial process.

Define. Recruit. Support. Disseminate. 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

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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Another Day – Another Blessing

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I suspect that there are times when I utterly annoy those around me with optimism. Not that I don’t have my moments when I simply fall apart, as most of us do, but I am a perpetual “glass half full” sorta person. It helps me feel better when I can see the silver lining, focus on the up side of whatever I am experiencing. Today I had an incredible opportunity to help educate about metastatic breast cancer and meet some amazing fellow travelers. We attended a focus group looking at the side effects of MBC medications. And we put it ALL on the table (except as I now think about it, weight gain! oops) – fatigue and poor sleep, hair loss and loss of sex drive, perpetual hot flashes and more.

What I found most interesting is our immediate bond. In the 10 minutes we sat together in the waiting room, it was already clear that the facilitator was going to have a bit of a challenge in keeping us focused. There was so much to share, so much to commiserate about, and so much to celebrate. Without exception we each found a new spirit in our lives after our MBC diagnoses, and I think it’s fair to say we each preferred the paths and attitudes we’ve adopted since our diagnoses. We all seem to be living more fully on whatever time we have!

So with gratitude for my new friends, and those who brought us together, I’m signing off on yet another great day!

RE-GROUNDING

A single choice: will I live today? Really live?

Will today have meaning? Will I use my time wisely? Will I nourish my family, connect with my friends, and attend to my soul? Will I make a difference today?

Will I laugh, think and cry, as basketball coach Jim Valvano urged?

Valvano died of metastatic cancer just eight weeks after he taught just that during an Espy awards speech, where they tried to give him a time limit. HA! (PS. Take the 11 minutes to watch it if you haven’t already!)

Over the past year or two I’ve been busy with very important work – work that I believe will lead to meaningful change to those living with metastatic breast cancer. I am blessed to have had the opportunity to lead an organization in this work, to be a part of defining its future. I am grateful for the chance I had, for sharing it with leaders who care passionately about the work, and for the progress we have made. But serving as president of a growing non-profit has left time for little else. And so now I’m grateful for new opportunities on the horizon!

Stephen King’s quote from The Shawshank Redemption has been an imperative for me for since I first heard it, but never more so than since my metastatic diagnosis in 2011. I’m keenly aware of how short life is, and strive to make the most the days I am blessed to live. And I’ve learned that sometimes less is more…

Life is about change, about evolution. Life is about becoming. A teacher and rabbi of mine once told me that we only become more of ourselves as we age and/or face adversity. He’s probably right.

But despite the ever-present drive to do more, fix more, support more, take on more, change more, be more, I know that’s not necessarily “living.” I’ve had the last month or so to slow down, make more time for family and friends – and for me. It has allowed me to step back from my advocacy and look carefully how I spend my time, determining which projects I truly find life-affirming and which might be left to others.

So I stumbled upon this….

Some of these come more easily than others, but I’m going to look to it as a reminder of how I want to live – the choices I want to make. I’m using it as a reminder to reconnect with friends, to focus on my writing, to laugh, to think and to cry.

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

Feeling Isolated? Open the Door

Author, blogger and online friend Nancy Stordahl recently shared a piece on the METAvivor blog about the isolation many metastatic breast cancer patients experience, and the variety of contributing factors. I urge you to read her post here: Ending the Isolation – Every Voice Matters. I agree whole-heartedly with Nancy.

In fact, about a week before I read Nancy’s post I had been thinking about this issue of understanding. Knowing how to share what we endure is a delicate balance of time and place and degree of detail. We are generally well aware that no one around us lives in the disease the way we do, and when we are lucky with effective treatments that aren’t particularly debilitating, our illness is largely invisible. When MBC patients claim that others can’t understand unless they have been here, then we check out of trying to share their experience. If we stick to that, then we perpetuate our own isolation. We can’t blot the door and blame others for not walking through it.

Nancy writes:

If you have observed a loved one suffer and ultimately die from metastatic breast cancer, you understand a whole lot, but still you don’t really know. Until it happens to you and your body, you can’t really know. This is true of many things in life.

Her last line was already in my head before I finished the paragraph before it. It is true for so many things in life. When I trained as a social worker one of the first things we were taught is that we don’t have to have a client’s particular experience to bring forth our empathy – there are many opportunities for us to leverage our own situations to understand the feelings of others. We do so every time we cry at a movie or offer sympathy to another, and in countless other situations. It is true that unless we live through most things we can’t completely understand. It’s also true that we can come close enough to lend support and encouragement, share fears and frustrations, and express our mutual fury at the loss that is metastatic breast cancer.

As always, I am grateful to Nancy for her frank and thought-provoking perspective. While there are plenty of people who don’t want MBC patients to disrupt their own denial, it’s important that we find the ones who are standing at the door with support, thank them, welcome them, and help them learn.

Heaven Can Wait – Death by Cancer

IMG_2497If you haven’t stumbled upon it by now, check out the British Medical Journal’s blog piece by Dr. Richard Smith asserting that death by cancer is the way to go. I am astonished, and I’m not alone. Smith contrasts sudden death, death by dementia, death by organ failure and death by cancer and comes out in favor of the latter. (He conveniently excludes assisted suicide, which is the only situation in which death is in the hands of the patient.) Perhaps, as other bloggers have suggested, more time with end stage cancer patients, seeing first hand what living with cancer looks like (never mind dying from it), would likely provide Smith with some much-needed perspective.

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