Ohm

I’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….

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The Walks…

Most of you have probably seen the Breast Cancer Action “4 Questions” campaign that was released last week. The focus is on four questions we should each be asking before we participate in community cancer (or really any fundraising) walk to ensure we know exactly what is happening with the money we are working so hard to raise.

1. How much money raised from the walk will go to breast cancer programs?

2. What breast cancer programs will the walk fund?

3. Do the walk’s sponsors increase women’s risk of breast cancer?

4. Does the walk present a one-sided picture of breast cancer that leaves some women out?

The best place to start finding answers is here. To learn more, please consider the upcoming BC Action webinar. 

Call to Action – 2 Minutes of Your Time

 

A QUICK introduction:

• Nearly 100% of breast cancer deaths are a result of metastatic breast cancer (MBC).
• MBC research accounts for roughly 7% of research funds – including prevention of mets.
• Death rates have hardly changed in 30 years.
• Most metastatic research of one origin can help those whose cancer started elsewhere.
• No matter what you read in headlines, we are not even close to chronic disease status, let alone a cure.

As the White House begins to establish priorities for the Cancer Moonshot they are listening! PLEASE follow the link below to support establishing metastasis research as a Moonshot priority.

Lives depend on it.

Metastasis Research Petition

A journey to the heart of the EMA – Patient-Voice – From Cancer World

A look into the growing role of patient advocates in the European Medicines Agency (Europe’s version of the FDA).

Flexibility and goodwill have allowed patient involvement in the work of Europe’s drug regulators to develop at an impressive pace. But will they be enough to withstand the strains on the relationship

Source: A journey to the heart of the EMA – Patient-Voice – January-February-2016 Issue 70 – Cancer World – Shaping the future of cancer care

The Tax Man Cometh: California Breast Cancer Research Program

 

Yet another in the alphabet soup of breast cancer organizations, right? Wrong!

There are countless organizations – and even more letters – in the world of breast cancer. A few stand out, and this is one of them! The CBCRP is much like the DOD’s CDMRP (aka “the DOD”), for those familiar with THAT effort. It is a California state research program that seeks to fund breast cancer research that is, in many ways, unique to California. With our unique perspective, diverse environments and ethnic diversity, we can do things other states can’t. CBCRP has two foci – investigator-driven research and program-initiatives objectives. CBCRP funds high-risk, high-reward research throughout the state.

I am honored to serve on the committee that helps administer the program, and I have a front row to the unique research we fund. CBCRP priorities include a focus on addressing primary prevention, understanding breast biology, and improving detection, treatment, survival and outcomes. There is a particular interest in the role of and unequal burden from environmental exposures, as well. Additional, CBCRP places a premium on the involvement of advocates in research, and reserves funds for community-initiated proposals.

It is the largest state-funded initiate of its kind!

People Say the Darndest Things

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.

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.

Do You Know What Your Trial is Doing?

Clinical 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.

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.