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!


Mea Culpa

I owe my family an enermous apology for an error in my most recent post. Wires were crossed and it seems I completely misunderstood information I was given about my father-in-law’s care at the end of his life. 

After hearing from family, I have been corrected – and want to set the record straight here. I suspect I confused concern over how he might be treated by the paramedics in relation to his advanced health care directive, rather than an actual incident. He was never intabated, the hospital and care givers followed his wishes, and the family did all they could to ensure respect, live, and excellent care. 

I have never doubted that he was given the best possible care and attention – this error is entirely mine, and I am deeply sorry for any stress, pain or upset I have caused. In truth, my father in law was treated with love and commitment that I wish everyone could have. He was helped to stay in his own home with superb care. He was loved, and still is, having left a significant hole in many hearts, including my own. 
I used the point essentially to illustrate how thing are, and what I hope will be for me. 

I humbly apologize again for any hurt I have caused. In the absence of a right-to-die clause, or if that window should ever close on me, it is exactly how I hope I am treated. 

What is Life After All?

California recently passed, and Governor Brown signed, the “End of Life Option Act (SB 128) that legalizes the right of physicians to offer patients a life-ending dose of medication. There are numerous requirements, including:

  • the adult (age 18+) patient must have 6 months or fewer to live,
  • the patient must request the medication,
  • the patient must be determined to fully understand and agree to the consequences of their actions,
  • the patients must be free of coercion,
  • a consulting doctor must concur with the diagnosis,
  •  a checklist of other requirements must be completed, and
  • the drug is to be self-administered.

There are other, sensible requirements too – that the patient not be alone, that next of kin is notified in advance, and so on.

I am grateful that I now live in a state that puts me in control of my future. Living with a terminal disease, it’s hard to go very long without recognizing that my life will probably be cut short. I imagine, too, that I am not alone in knowing how difficult death can be under such circumstances. Typically patients are left powerless, even with advance healthcare directives and DNRs, things happen. So this bill gives me some added measure of choice – one that I hope to address in my late 80s!

But it begs the question: What life is… Is it a heart beating and lungs breathing? Is it consciousness? It is the ability to be present and engaged? What we each believe is based on religious doctrine, communal norms, and even our gut instincts. The best I’ve been able to do is this: I want to be able to connect in a meaningful way with the world and those I love. Simple, but not easy. But hopefully the choice will be mine…

What is life on your terms?

Mammography Guidelines Revisited

 In 2009 the US Preventive Services Task Force made new recommendations about the use of mammography for general breast cancer screening. This government panel that seeks to set standards for preventative medicine and screenings. Their shift, both raising the age at which they recommend women begin getting screen mammograms and reducing the frequency, was met with fierce resistance in the community. Even Medicare announced that they would not follow the new guidelines, still covering the cost for annual screenings. The USPSTF is taking the matter up again and we should anticipate either new guidelines or more information for the basis of the current ones.

It is critical to note that these guidelines do not and never did pertain women at high risk, but rather are for women whose primary risk factor is being a woman. For others, it is critical to discuss the frequency and type of screening with your doctor.

Earlier this week, the American Cancer Society came out with their own recommendations which seem to strike somewhere in the between the old, annual screening guidelines beginning at age 40 and the new annual screening recommendation between 45-55, then biannual screenings after that. And so we are again abuzz with the concerns.

My recommendation, since I’m frequently asked: talk to your doctor!

But why the change?

Many people I’ve spoken to believe that this is the new managed care – less care. Others think it’s the “death panels” of the Affordable Care Act emerging. Personally, I think it’s neither – I think it’s a growing body of scientific evidence informing health care decision-making. For my money, I’d rather seen us follow the science.

Underlying the mammography debate is a critical question:
What difference does mammography actually make?
Is there more cancer? The more we look, the more cancer we find. Screenings at earlier ages combined with the technological capacity to identify ever-smaller evidence of cancer leads to more diagnoses. But that doesn’t mean we’re seeing more cancer – it means we’re detecting more cancer, especially more DCIS or “pre-cancer.”

How do we intervene? Knowing what to do with raw data can be a challenge, especially in the case of Stage 0 cancers. The truth is, we’re still learning how to advise them – the pendulum is swinging between the aggressive bilateral mastectomy for pre-cancer to “watchful waiting” to see if it beings to grow or spread.

When it comes to later stage cancers detected on mammography, here tend toward thinking more is better – aggressive surgeries and chemos, and radiation exposure that could cause other cancers later in life. Thirteen years ago, when I was first diagnosed, I was exactly there – let’s do “everything possible” to stop this from getting any worse. Famous last words…

What does the cell say? It is becoming increasingly clear that it is cell-biology, the inherent nature of the cell, that drives the progression of disease. If the cell has the capacity to migrate and can withstand dormancy until is it opportunistically “reawakened” you are at risk of metastatic spread. While a large tumor of Stage III cancer found in the breast might not ever metastasize, Stage 0 cells could have migrated elsewhere before it is even identifiable in the breast, sitting undetected. These answers will make a significant difference in how we treat cancers

Does it matter? Stage at diagnosis is but a small piece of the picture, and there is mounting evidence that it may not at all be the most important factor in spread. Beneath all of this lurks a modern “truism” that may not be true at all: that early detection saves lives. We’ve come to take this for granted, and for good reason. We want to believe that if we are vigilant we will be lucky.

Personally, I think the new guidelines are a compromise which seeks to identify the generally more aggressive cancers found in younger women, while being pragmatic about the slow-growing cancers that are typically found post-menopause. Further, we are coming into a fuller understanding of the very serious risks of over-treatment, recognizing that the risks and compromises made of treating cancer too aggressively is it’s own, legitimate concern. But there is no question that we need a fuller, better understanding of what mammography can and cannot do, accepting it’s limitations and shedding the myth that more – more screening, more surgery, more chemo, more radiation – is better.

Want to know more? I recommend Dr. Susan Love’s recent post on what mammograms do and don’t tell us.

Sharing for a Cure


As you probably know, I’m not one for the pink party that breast cancer has become, I’d prefer to stay at home and hide rather than confront yet another BCAM (Breast Cancer Awareness Month), and I certainly don’t endorse “Shopping for the Cure.” But I do think this is a good time to share some highlights that have come across my path. Last year LA-based photographer Bill Aron published his long-awaited New Beginnings: The Triumph of 120 Cancer Survivors. This beautiful photo-journal highlights the inspirational stories of living with and after cancer – stories of hope and aspiration, of joy and even transcendence. I’d urge anyone with cancer to engage with the book. It is available on Amazon and other sites, but is also alive and well on a new blog, where you can share your own story. And you’ll find some familiar faces, too!


I Am Anna comes to us from ReThink Breast Cancer and shares the beautiful and heart wrenching story of a young mother seeking to leave her legacy for her husband and young children, while facing the reality of her disease. It may seem like a long video, but if you want to understand living inside the life of this disease, I can’t think of a better film. It’s not easy, but it is powerful, and worth your time.


There are any number of meaningful ways to get involved. This year MET UP, a new organization that wants to change the conversation about metastatic disease, is staging a “Die In” in Washington DC on Oct 13. Their goals are:

  • We want the SEER database modified to begin tracking when someone with early stage disease metastasizes, so that every woman and man with metastatic disease is counted.
  • We want additional research funding for all cancer types. The National Institute of Health (NIH) now only funds about 8% of the grant applications it receives. We want that number increased to at least 25%.
  • We want at least 30% of federal breast cancer research dollars to be spent on metastatic disease, with a focus on translational research.

If you would like to sign on to their agenda, please consider using this draft letter to contact your members of Congress. We are in dire need of greater awareness, a better understanding of the disease, and more funding for research.

So – enough pink – let’s learn and act!

In John I Trust…


Long, long overdue, we have finally dotted the i’s and crossed the t’s on all those pesky documents that grown ups are supposed to have – wills, and trusts, and so forth. And while I was in the process of doing this, someone actually raised the same topic on a bulletin board I follow, mentioning how satisfying it was to know it was done. I agree!!


That said, addressing health care directives, living wills and, ultimately, what I want in terms of end of life treatment wasn’t exactly easy. Cathartic, important – to be sure. But going through dozens and dozens of scenarios of various forms of incapacitation, and what I might want so as to give others a sense of what I might want at the end of my life wasn’t without its emotional pitfalls. There were afternoons when I would just cry – happy to excise the tension, but deeply sad and resentful that I had to think about it at all. I get why so many people just put their head in the sand! (PS My quick internet search didn’t find any women engaging in such behavior – just sayin’.)

In the end it is the realization that no matter how many tales I spin, out, no matter how many scenarios I come up with, it’s not likely to go that way. Whatever happens at the end of my life, all I can do is to share my priorities and beliefs, and count on others to feel good about carrying out my wishes, even if they don’t match theirs; to count on others to let me go even when they are not prepared to say goodbye.

As things stand today, I’m guessing that falls to my husband. We have been together since we were just about a year older than our son, from the tender age of 18. We have weathered storms and celebrated milestones. We have loved; we have angered; we have built a wonderful life and a loving family; we have trusted and we have had faith in ourselves and each other through more than three decades of ups and downs. Just thinking about an end to that, under any circumstances, is heartbreaking, but there is no one I’d rather lean on – in sickness and in health.

Another Day – Another Blessing


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!


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.



Share your own #RealHopeIs…

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