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. More

Self Care?

I dread even writing the words. I resist, deny, justify, ignore, and try to learn the lesson over and over again. I had lunch with a friend recently and we were talking about my trip to Italy. I shared my realization of how much work just caring for myself canbe – walking 2-3 hours a day, getting to my writing, cooking healthy food – that’s a full time job!

“You learned this before,” she says.

Of course, she’s right. In fact, I’ve learned it many times before. And I know I’m not alone in this. Raise your hand if you are POSITIVE you would put your oxygen mask on first when sitting next to a small child…. I think I would, but at the risk of watching my child pass out, I can’t say I’m certain. Thankfully we’re past that age. We’re getting to the age where it’s more likely he’ll have to put my mask on me.

Which begs the question: Why is self care so hard? Is it a male/female thing? A motherhood thing?Why is the line between self-care and selfish blurry? Why does caring for others come naturally, but caring for ourselves require reminders and negotiations and, sometimes, very loud wake-up calls? More

Of Ice Buckets and Silent Patients

Barbara Brenner, the first full-time Executive Director of Breast Cancer Action was a 2-time cancer survivor who died of ALS. Even when her voice was silenced by the disease, her writing continued to educate and inspire. She never stopped asking the tough questions, and persisted in her demand for answers. She is missed.

Even as our Facebook feeds rapidly fill with videos of some very cold people (as well as some Three Stooges-grade comedy), the controversy of the ALS Ice Bucket campaign is being challenged.

My take: people have done stranger things for a cause – buying and using carcinogenic products for “the cure” comes to mind. 

Wasting water? Some – yes, absolutely. But I’ve also seen friends stand in a pool and use pool water so that everything but what soaks their clothes is recycled.

Taking away from other charities? That could be. But if you didn’t know before, you probably do now – ALS is devastating. It is like dying from within. While your mind stays sharp, your body parts lose function – use of limbs, voice and even the ability to breathe are inevitable with this disease. I haven’t looked at the numbers in depth, but the ALS Association is well-rated and regardless, the needs of those living with ALS are most certainly worthy.

Are there better fundraising options? Probably. A campaign that will sustain the new funding levels would probably be the ideal option. And that may come. For now, the infusion of over $15.5 million dollars can, if used well, make a meaningful difference.

For me, here’s the biggest issue of all: while practically everyone has heard of Lou Gehrig’s disease, I fear too few of us knew what it was before the Ice Bucket Challenge began. Patients aren’t out and about much, and it’s easy to forget about them. Awareness and education, and helping ALS patients share their voice and their stories matters. It matters a great deal.

You probably know I’m not a huge fan of “awareness” campaigns – I do feel strongly that they need to be tied to action. As a person living with what is often referred to as a “bully disease,” I recognize that there are many levels of awareness. While we are all of breast cancer, inflammatory breast cancer, metaplastic breast cancer and metastatic breast cancer (to name a few), typically remain shrouded, and are not given the attention the severity of these diseases demand.

So, the ice water part is all in fun, but let’s pay careful attention to the heart of the matter: giving voice to patients and supporting an under-funded disease. If you don’t know what it’s like to live with ALS, please watch this video: 

Speak Up!

It’s an ironic title for my first blog post in over a month, I know. But its been a truly insane summer, and sadly there hasn’t been time to blog. I’m optimistic that today’s post will turn things around, so keep your fingers crossed for me!

 

So, here’s what prompted today’s thoughts: I had a follow-up doctor’s visit this morning. When we entered the exam room John pointed out a posted announcement of an upcoming program under the heading: Patients Invited. The event is an upcoming lecture about BRCA in this it’s 20th anniversary year. The slate of speakers was impressive, but it was clear something was missing. There wasn’t a patient/advocate in the bunch.

Interesting, huh? After all the progress we have made, when clinicians come together to discuss a topic that is, from the patient perspective, so deeply wrapped up in emotions, their voices don’t even make the agenda. More

Breast Cancer Advocates: Five Minutes of Your Time, Please…

5minutesI am thrilled and honored to be attending the upcoming AACR Scientist <-> Survivor Program in April! One of the requirements for us as advocates is to present a poster. Mine focusing on giving researchers greater insight into who advocates are and what they do. To do that, I need your help.

The survey linked below is 9 questions long and will take no more than 5 minutes. I am not collecting any personal data and your responses will be combined with those of others; you will not be identified in any way.

Please TAKE THE SURVEY to help me explain who we are, what we do, and why we do it!

Thank you VERY much in advance!!

TRANGST

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We’re familiar already with the term SCANXIETY – the persistent anxiety that surrounds PET, CT, Bone, MRI and whatever other scans they can throw at us. It pertains to the test itself, and to the wait — the hours or days it takes to get our results. But as I await the shipment of my new meds from the speciality pharmacy, I think we need coin a new phrase, TRANGST, perhaps? The angst that surrounds the change to any new treatment protocol, with it’s unknown side effect and unknown impact.

And that is where I sit today…

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#BCNext

We are constantly confronted by “breast cancer marketing,” the barrage of pink, from funding free mammograms and research, to supporting individuals with cancer, some of whom can’t even afford child care and transportation to treatment. We range from those with strong family histories, whether BRCA positive or not, to those enduring treatment, to long-time survivors with metastatic breast cancer, to those we have loved and lost. We are each the face of breast cancer.

In America, and I presume elsewhere, there is a great divide between those of us on the ground, living with and dying from cancer – and the other side of breast cancer, those who make funding decisions and allocations of both donated and allocated dollars, private, public and NGO.

If you could have their ear for a moment, if you could tell them what YOU think, what YOU see, what YOUR breast cancer priority is? What if your voice, combined with others like you, like me, could help influence our future?

Comment below or tweet to #BCNext to join the dialogue and spread the word! Let your voice ring out!

Health Insurance: Consumer Good

Deadline-ClockAfter an 11th hour extension, today’s the day on which all, well most, Americans are supposed to be enrolled in a health insurance plan. And as a million users are trying to access a hopefully functional website, here’s my take on health insurance.

There’s been social media buzz about health care/health insurance costs, value, and the choices we make, and a general pondering about what these new exchange plans will actually provide. We’re reluctant to pay for health care, especially if we are young and well and believe in our own immortality. Though we gladly pay for vacations, we resent paying for health insurance. We don’t complain about the rising costs at Disneyland the way we do the rising costs of a PET scan or a prescription drug. And of course it makes sense – we work hard, if we can work at all, and the American Dream teaches that we should have some joy in life. When paying to stay alive is all we can do, resentment/frustration/anger follows naturally.

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Our Seat at the Table

seat-at-the-tableThis is going to be one of those posts that’s going to get me in hot water. That’s ok – I’ve been there before!

This week is the annual San Antonio Breast Cancer Symposium, perhaps the largest and most noteworthy of them all from which emanates some of the biggest Breast Cancer headlines. The magnificent Alamo Breast Cancer Foundation provides a truly INCREDIBLE service to advocates (even above and beyond their scholarship program) by bringing together top people to summarize the day’s headlines. Tonight’s “mentor session” was live-streamed thanks to Dr. Jay K. Harness at BreastCancerAnswers.com.

As always the presentations and questions were outstanding. One sparked a little discussion in the twitter feed.

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Another One Bites The Dust

So it happened, what every metastatic patient fears: the next line treatment, a reminder that metastatic cancer overcomes therapies nearly every time and that one life-extending option has been crossed off the list.

All metastatic patients know that there is a list of potential treatments, each in due course. At some point the current treatment will stop working and we will move on to the next one. We live with the hope that research will move fast enough to keep something on our list.

My new therapy may last a year or it could last ten. I will only know when it ceases to work. Everyone seems to love my new drug. And while it is two large needles and a very slow injection every month, it has the added advantage of not having to remember to take a pill twice a day, which is huge. I’m told it is very well tolerated and it has a great track record of effectiveness.

I’m as optimistic is anyone can be but I serve no one if I’m not honest as well: I’m not okay that I’m one treatment down. So while I wait with hope and gratitude for all of the researchers, trial participants and doctors have brought me to this opportunity, I wait, too, with a little bit of grief for the most recent therapy crossed off my list.

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