Metastatic Breast Cancer Awareness Day

Yesterday was Metastatic Breast Cancer Awareness Day. I had intended to write or post something, but time slipped away… an early appointment with my oncologist, a crisp fall day, blue skies, dropping by to see my precious parents working in their beautiful yard, a call with a close friend, a rest on my porch swing…and on the other end great fatigue, some sadness, some physical discomfort, and processing news that tumor cell counts were not moving in the right direction.

October is a tough month for many of us with breast cancer that has spread (metastatic), because the message is almost always about early detection and about those who have undergone treatment and are stronger and happier than ever-strong survivors living strong. I never dreamed mine would come back, but for 30% of us, it does. Mine after 7 years. I was part of that message of hope and strength…I had advocated for all survivors around the world, started a program and coached survivors, published research, wrote a book about BC, started websites, spoke to audiences large and small to try and make a difference but rarely spoke of metastatic disease. It's what all survivors fear. Yes, it is implicit in the message that this is a serious disease, but often the key message is lost in pink, with some mistakenly believing we actually have a cure. You are only cured if it never comes back. It can come back even as much as 20 years later.

When I asked my oncologist if he knew it was Metastatic Breast Cancer Awareness Day, he responded instantly with sadness, kindness, compassion, and love all at the same time in one beat, "Every day is metastatic awareness day here…"

As my disease progresses, each moment of breath and life I am lucky to have, I am aware.

Remember breast cancer doesn't kill you when it stays in the breast…it is deadly when it spreads to other parts of the body. And yes, 40,000 mothers, daughters, sisters, grandmothers, aunts, and friends still die each year in our country. The funding for research and understanding what happens when it spreads-what actually kills women, is very small. A number of metastatic breast cancer organizations have come together to have a more powerful voice. If you want to know more or feel compelled to help, go to

Know Your Density website

I have lived with metastatic breast cancer for three and a half years. It spread to the pleura of both lungs and skin. I have damage to my lungs from either drugs/procedures/cancer and has forever changed my life as I am dependent on oxygen 24/7. With daily priorities of simply "breathing comfortably" and attempting to "eat", life becomes an interesting experiment. Cancer has become an additional full time job. While managing oxygen supplies, supplies for draining my lung, doctor appointments, drugs, symptom management, infections, and most importantly figuring the best way to breathe and eat comfortably from minute to minute, I listen and wait for moments of beauty, connection, and gratitude.
Gratitude and affirmation found their way into my life yesterday when a passion of mine was recognized.

I was crazed and passionate about finding answers in 2004 about early detection, when I was first diagnosed with breast cancer. That investigation led to speaking, writing, and starting a formal campaign to educate women about breast density and why it was important to understand. I pledged to reach a million women (though secretly 100 million). I spoke every opportunity I could and had t-shirts/bags and other items printed to spread the word as well. It ultimately led to creating an informational website about breast density: To this day, it gets more hits than anything else I have ever done, continuously. Though it is small and simple, I have had women tell me it is the most helpful thing they found on the web (no longer true, I think, but read on).

I owe much to the professionals who educated me, so I could pass on informed, solid information. One of those, Dr. Wendie Berg, a passionate patient advocate for women and accomplished radiology researcher and clinician, picked up her phone on that one fateful morning and graciously spoke to me…and things were never the same again. She supported me tirelessly as I asked every question I possibly could, with her sharing papers, news stories, editorials, and other information to help me get a real picture of the state of things at any given moment. We winced together as we heard news stories not getting it quite right over the years. What I know for sure, is that she cares. She really does. When I was asked to write 101Things You Should Know About Breast Cancer, she even reviewed the related sections for accuracy as well. The funniest part, is that through knowing her over 10 years, we have never met, but I hold her dear and close!

So in time, I passed the torch, so to speak, to others to do legislative work while I coached cancer survivors, co-published research showing its value, advocated on many topics for all cancers, wrote my book, and taught as faculty for Wellcoaches. I kept my website updated but left the rest to others who have done amazing work. Now in 22 states, there are laws around informing women about breast density AND one of the best educational sites and non-profits on the topic is now live and available for patients and professionals because of the cumulative work of many at

Now, drum roll of gratitude and affirmation. Though we talked about collaborating with my current website domain as a legacy to leave, I chose to keep mine more personal and keep it for now. But, has graciously honored my work, time, and efforts (KnowYourDensity) naming me an educational collaborator along with AVON, Joan Lunden, and Dr. Susan Love for their new organization, Congratulations to JoAnn Pushkin, Wendie Berg, and the many contributors to Densebreast-Info. It is a time that has come.

I hope you all will share with all the women you know, to learn more about breast density with this new information resource! Its a beautiful thing.

With love and a grateful heart,