Call to Action – 2 Minutes of Your Time

 

call-to-actionA 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

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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.

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.

It’s the Friday of Memorial Day. Do You Know Where Your Tumor Block Is?

Remember me? I never call, I never write…and I do apologize. It’s been a bit crazy here on so many levels. The good news is I am feeling well, there’s no significant cancer news so I’m jumping right back into the fray because, well, I have to…but know that I’ve missed you!

 

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I’m coming up on a 12-year cancerversary of sorts – my bilateral mastectomy was the first week of July 2002. Early enough in the month that the residents would be fresh and eager and before they had learned to sleep on their feet during rounds. Round about July 7, but I would have to dig out papers to confirm that. It’s good when some details float away…. In fact, don’t normally acknowledge this particular moment in my cancer biography, but it has been brought into the spotlight thanks to my desire to have my tumor sequenced. The back-story goes like this:

I’m not yet convinced that my third-line therapy, everolimus and exemestane (aka Afinitor and Aromasin) are working. If they are, they’re taking a lot longer than I would like, but that’s another story….

This story is about if/when I have to move on to the next treatment (yeah, that “if” is there to protect my sanity for the moment), I’d like the direction that genomic sequencing can provide. Do I have mutations in the PIK3 signaling pathway? What about the CDK4/6 pathway? Or any one of the myriad of DNA corruptions that could guide us as we enter the world of personalized medicine.

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MBC: Let’s Change The Conversation

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I’ve been dreading this post since I first learned about “Metastatic Breast Cancer Day.” As bad as pink is during the month of October, this is actually worse.

  • It’s worse because it reminds me that we are STILL losing women, and men, to breast cancer at a horrifying rate of nearly 40,000 lives a year.
  • It’s worse because so few people, even people with early-stage breast cancer, actually understand mets.
  • It’s worse because a paltry 3% of all the breast cancer research funds are invested to help the 30% of us who comprise the nearly 100% that die from the disease.
  • And it’s worse because today is my son’s birthday.

I’ve laid low on MBC Awareness Day because he takes this hard enough, and because, in truth, every day is Metastatic Breast Cancer Awareness Day around here. Every day is a day when we think about my meds, my stress level, my exercise, my eating…every day we seek ways to prolong my life.

However, this MBC Awareness Day YOU can help. METAVivor is a wonderful organization focused specifically on research. 100% — yes, 100% — of the funds raised go directly to metastatic-specific research projects. They do not have a staff person and they are run by the AMAZING Dian “CJ” M. Corneliussen-James (@CJMeta) Grants are awarded through a peer-review process that includes consumer advocates. This is the real deal, an organization that walks the walk. It’s small, but mighty. It is the antidote to Pinktober, and you can help it grow.

During the month of October, MBC AWARE is raising funds AND awareness of MBC through a broad social media campaign. It is so easy…click the link above. From there, each action is worth a $1…share on FB, tweet, and more. And do it daily.

While you’re online, if you have a few more minutes, read about METAVivor – you need to know about them!

Take away: if you do 2 things this Pinktober, reach out to someone who has mets to let them know you care and click to support Metavivor. And then feel good about leaving the pink crap at the store.

How Does Your Garden Grow?

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I started my day with quite a “to do” list. You see, the last two afternoons were filled with unexpected yet compulsory appointments, and so everything got shifted on to today. I decided to start at the nursery, as I have needed to pick up ladybugs for over two weeks. Fruit is emerging on vines, and if I have any intention of feeding anyone but the bugs, well…let’s just say it had finally risen to the level of urgent. While there a pot for my sprouting avocado seed, cages for the tomato plants and even a blooming “topsy turvey” strawberry basket made their way into my little red wagon. (Please don’t ask me why I needed a wagon for the intended purchase of a Chinese take-out container of ladybugs. Thank you.)

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Life On the Margins

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It has been an incredible few days at this year’s National Breast Cancer Coalition (NBCC) Advocacy Summit. From meeting wonderful “virtual” friends at last, to briefings on the cutting edge research and progress toward Deadline2020, both my heart and mind have been expanded. Tonight is our annual celebration, and tomorrow we will be on Capitol Hill making our final push on behalf of both “The Accelerating the End of Breast Cancer Act” (HR 3067) and continued funding of the Department of Defense Breast Cancer Research Program. Overall, I have to say…it’s been AMAZING.

BUT…

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