Be the CEO of your care

Be the CEO of your care

Sometimes I wonder if we were called customers instead of patients, would we get better service?After all, patient implies you’re patient. Maybe if we called it service instead of care, providers would not have the option whether or not to care. You have the option to care or not, but you don’t have the option to give excellent service —  if you want to stay in business, that is. Semantics aside, I find it quite shocking how late to the game health care is when it comes to pleasing its customers. It is only now, with government requirements for Medicare/Medicaid to have some kind of patient satisfaction program in place, that this is changing.  In Oct. 2012, the Centers for Medicare & Medicaid Services began withholding hospital’s Medicare...

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Putting on my advocate hat for the Komen VIP Blogger Summit

Putting on my advocate hat for the Komen VIP Blogger Summit

My mission has always been to instill hope and information to others battling advanced cancer of all types. It has been more of a personal message, which has evolved over time. Take care of yourself, be your own advocate, don’t give up hope. Yet I cannot dismiss the dark side of the issue as I connect with more and more people living with this disease. There are too many people dying, many of them young parents and single women who were robbed of the chance of parenthood — and that is unacceptable. More than 40,000 women and men continue to die from stage IV breast cancer each year and 20-30 percent of all cancers will become stage IV at some time. Yet, according to a thorough landscape analysis by the Metastatic Breast Cancer (MBC) Alliance (of which...

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Metastatic Breast Cancer Alliance study shows gaps in research, care, awareness

Metastatic Breast Cancer Alliance study shows gaps in research, care, awareness

Recently there was an online campaign to get metastatic breast cancer (MBC) trending on social media. It achieved its goal, and it left me wondering what more could be done to increase awareness of and funding for MBC. Last week I participated in a webinar given by the Metastatic Breast Cancer Alliance to review the findings of their Changing the Landscape Report. I’ve been excited about the organization since learning about it. I believe collaboration is key if we are going to find solutions to this disease, which causes 40,000 deaths annually in the United States alone.  It is also estimated that at least 150,000 people of all ages and all racial and ethnic groups are living with MBC in the US, and obviously I am one of those people. We need action, and...

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Being proactive helps Krysti beat the odds of inflammatory breast cancer

Being proactive helps Krysti beat the odds of inflammatory breast cancer

The longer I’m on this cancer journey, the more I’ve learned how important it is to be an informed, proactive patient. Thank God I’ve met so many inspiring people who have helped pave the path for me. My friend Krysti Hughett is living proof of the power of doing your research and advocating for yourself. She has shared so much valuable information with me about clinical trials and cancer freebies like Camp Kesem, a free overnight camp for kids whose parents have/had cancer (our daughters have been cabin mates for seven summers now). So I was thrilled when she agreed to share her amazing story in my book, Miracle Survivors: Beating the Odds of Incurable Cancer. In 2004 at age 44, Krysti Hughett learned she had inflammatory breast cancer (IBC), a...

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New look, new book, new treatment

New look, new book, new treatment

New look The first thing you might notice is Miracle Survivors has a whole new look! I think it’s fresher, easier to navigate, and overall, an improved design. We’ve cleaned up some of the items you see in the right sidebar and moved the page tabs to the other side. You don’t have to scroll through a whole story to get to the next one or through a long list of categories (thanks to a new menu pull-down feature). I want to thank my friend and web designer Jason Bayer from MOBA Interactive for all his great work! New book Which brings me to my next piece of exciting news! Yesterday I received my shipment of my new book, Miracle Survivors: Beating the Odds of Incurable Cancer! I’ve heard from many of you who pre-ordered yours from Amazon that...

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Here we go again

Here we go again

Five words: Cancer sucks. Love is great. As I wrote last week, I had some major scanxiety leading up to my PET scan. I knew something was wrong. Unfortunately, I was right. There was progression, which means my treatment, which I had been on a record time of 20 months, stopped working. It was something I knew would happen eventually. Throughout my almost seven years of living with stage IV breast cancer, I’ve been on 12 different treatments. Somehow, the sneaky bastards/aka cancer cells find a way to survive and flex their might by growing. Funny how my mind works. This is inconvenient timing. I’m on the cusp of releasing my new book, Miracle Survivors, which will available on Nov. 11. I have a big launch party planned. I’m traveling to LA for a...

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