Who Owns Our Genes?

Such was the case heard at the Supreme Court this morning. I was honored to be asked to speak by rally organizer Breast Cancer Action. My remarks are here:

The Antidote to Myriad & More

This is very much not my style! I like to do my research, make sure I’ve evaluated all angles, shore up the details, and THEN dive in with both feet. But today I don’t have time for that!

Last night my husband’s colleague Bonnie pulled me aside at dinner to tell me about an article she’d read in the local law journal. The room was crowded and I knew I wasn’t going to “get it” and so she offered to send me it to me. It just arrived. TWO amazing gifts from ONE amazing company: VIRATECH.

(Now, let’s hope that in my rush to share I don’t get this all wrong…)

Cleaning out the Cobwebs

I must admit, I have been neglectful of late and it’s gotten a bit dusty around here. As it is wont to do, life took over. The cobwebs aren’t just virtual, though – they are metaphorical as well; it’s pretty dang dusty inside me head of late! So here’s a quick update of what’s been keeping me busy:

The Antidote to Pink Fatigue

© Pam Stephan

October tends to be a stressful month for me. School is back in full swing with a panoply of activities requiring my chauffer skills. My program year at work begins in earnest, interrupted – good and bad – by a series of holidays. While I enjoy the celebration, the office closures don’t seem to change the work demands.

And then there is PINK.

It’s hard to explain why, as a women living with metastatic breast cancer, I don’t jump on the pink bandwagon.

It supports me, right? Well, no. Wrong. Remarkably wrong.

I Want You To Know…

I have been neglecting this blog, and the list of posts I intend to write is growing rapidly. There’s some pink fatigue, things are busy in life, at work…and just to make sure I have no time to get into trouble, I am taking a new writing class this fall.

This past week we were asked to write on the prompt “I Want You To Know.” I am not sure why the #bcsm community was on my mind that evening, but it was very much in my thoughts as I wrote the following:

I want you to know that you’re not alone on this journey. It is so complicated when we begin…the cacophony of new information, advice and decisions, the pressure to make quick and vital treatment decisions; the fear, the anxiety that can stop you in your tracks…you’re not alone in this.

I want you to know that the decisions you are about to make, though vitial, are ones that you can master. There are people ready to help you – to learn this new language, to answer your questions, to dig deep into the research, or just let you cry.

I want you to know that there are others who have walked this path before you. Women, and men, who have been where you are now. And while their paths may be different, they will intersect with yours again and again.
I want you to know that we will be here. Any day, any hour. I have lay awake at 3 AM, terrified, alone in the dark. I don’t want that for you.

I want you to know that we are here to help. This is a strong and vibrant community, and while you may not know us yet, we are committed to your survival, to your well-being, and we stand with open arms whenever you need us. I want you to know we will help protect you.

I want you to know you are not alone. We are tens of thousands strong.

I want you to know that it will be hard. You will be frightened, overwhelmed, confused. You are still not alone.

I want you to know that there is nothing you can say to scare us, or send us away. We don’t know where this journey leads…but I will be at your side, wherever it takes us.

I want you to know that cancer will not win. It will make you stronger, even if it weakens you. It will teach you to love in ways you never knew you could. It will give you insights, and power, and courage. And even if it manages to overtake your body, it will never overtake your spirit.

I want you to know that you can do this. And you will not be alone. I just want you to know…

MBC: Let’s Change The Conversation

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.

“It Will Be Okay…”

Remember in Toy Story, when Mrs. Potato Head is about to send Mr. Potato Head off to help save Woody and tells him she’s packed his “angry eyes?”

Here’s to using our “angry eyes…”

AnneMarie’s writing challenge last week was to share the annoying, upsetting, infuriating, frustrating, painful things we have heard as survivors. In reading some of the comments on her blog, I am reminded of how lucky I’ve been. There have been few overtly stupid things said within my earshot. As always, AnneMarie got me thinking…

The Stolen Color From My Rainbow

I’ve been pondering this post for about nine months, since October, when our concerns with “pinkwashing” peak each year. That is when it first occurred to me that I resent giving up pink. Today’s release of the new film Pink Ribbons, Inc. prompted my return to the subject. (I already have my tickets for tonight’s showing at the Laemmle.)

I have never been a huge fan of pink. Too girly, maybe or too cheerful for my “take no prisoners” and follow no rules self. But that does not change the fact that pink should be mine to reject, not “theirs” to take away. The color has been usurped by the cause marketing world as a vehicle for selling products, most of which do nothing to impact breast cancer.

As the movie explains, the ribbon didn’t even start out as pink in the first place. It began in the early ‘90s as a peach ribbon, created by Charlotte Haley, whose grandmother, sister and daughter all had breast cancer. Ms. Haley used handmade ribbons to bring awareness to the lack of funds directed toward breast cancer prevention by NCI. She is rumored, ironically, to have rejected Estee Lauder when they approached her about co-opting the ribbon as a broader symbol of anything but her personal awareness campaign. Enter pink…

In the breast cancer world pink may be the most divisive thing of all! Some love it, some hate it, but no one seems to be quiet about it. The division doesn’t help us! We, the breast cancer community, must come together. We must give up the pink war. We must use the vast resources at our disposal to strategically focus on curing breast cancer. We need to prevent disease. We need better treatment. We need prevent metastasis. And we need to prevent people from dying. We don’t need pink.

A few weeks ago I came home with new pajamas. As I was putting them away husband noticed and said, “But they’re pink…” Yes, they were pink! Why shouldn’t they be? I want the beauty of my rainbow back, in all its colors!

How Does Your Garden Grow?

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.)

Life On the Margins

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…