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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Listening to hope: Miracle Survivors audiobook

Listening to hope: Miracle Survivors audiobook

It’s kind of weird thing writing a book. It’s like birthing a baby; you put a lot of work into it and give it a name, then release it to the world. You don’t want your child to be rejected, and it’s easy to take people’s acceptance or rejection of it personally. So it has been with me. Miracle Survivors is my second book and I absolutely believe in it. Yet I’ve been a little wary of promoting it as much as I did with my first book, From Incurable to Incredible. True, this one was published traditionally rather than self-published as my first one was. I didn’t have as much control over the process and not everything about the final outcome is perfect. But I’ve been realizing the book isn’t about me (although I...

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Lessons learned – living with that unwanted guest

Lessons learned – living with that unwanted guest

One of the features of my book, Miracle Survivors, is a list of “Lessons Learned” from each survivor who shares his/her story. Some examples: “Be in charge of your own health. It’s not about the patients vs. the health system; it’s about saving your own life.” – Mark Roby “We can accept ourselves and the fact that we’re not perfect and can’t always act perfectly. Just try to be healthier in mind and body and make life in general better for yourself and others.” – Dikla Benzeevi “You have to keep moving forward. If you hit a roadblock during one treatment, try a second. Don’t give up the first sign something’s not working.” – Mark Williams I was thinking today of...

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The Anatomy of Hope

The Anatomy of Hope

If you know me, you know I’m no fan of statistics. It’s the whole reason I wrote two books about people who beat the odds and why I continue to do this blog. It doesn’t take much digging to see their unreliability. As the American Cancer Society states on its site, the statistics they have for breast cancer survivorship are based on “people who were treated at least 5 years ago. Improvements in treatment since then may result in a more favorable outlook for people now being diagnosed with breast cancer.” I look at my survival. According to these outdated statistics, I only had a 22 percent of being around five years. It’s been seven years since I was diagnosed, and I’m still here. And the past two drugs I’ve been on...

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Keeping it real: You don’t always have to be strong

Keeping it real: You don’t always have to be strong

We’ve all been there. You’re in a social setting and someone asks you how you’re doing. “I’m fine; how are you?,” you automatically reply. You might chat a bit about your kids, work or the weather … maybe a vacation that’s approaching. Then you move on to the next person. I was at our spiritual center on Sunday after the service. Everyone was downstairs having coffee and snacks, chatting away. And I was  feeling lost. lonely and agitated, even after the very positive message our minister gave. I found my mind wandering during the whole service. Fear about my scans, anger about having to deal with cancer all the time, and worse of all, a feeling of helplessness. I looked in the mirror in the bathroom and thought I...

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Scan update: F*&^ that fortune cookie!

Scan update: F*&^ that fortune cookie!

Sometimes hope is hard. It’s like a muscle that needs exercise to keep from getting flabby. It’s not always something that comes naturally. You have to work at it, especially when the going gets tough. That’s the space I’ve been in lately – wavering between hope and fear, gratitude and disappointment. Last Thursday I was having what you’d call a bad day. Nothing was working out as planned. I missed my yoga class because I had to go down and wrangle with the grumpy manager of the hall we were renting for Chrissy’s 16th birthday party. Then I got interrupted after 15 minutes on the treadmill at the Y because I had to go home to let in Chrissy, who forgot her key. And the kicker – I picked up my scan results, and they...

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A love letter to my valentine

A love letter to my valentine

This morning I had my PET scan. Before I left for the hospital, I said to myself, “Cancer, I quit you! I don’t want you in my life anymore. You can go now.” It was a brief, “Take this job and shove it” moment and an affirmation/hope that this new treatment will finally do the trick. I know the nature of metastatic breast cancer, though, and at least for the foreseeable future, I don’t think I can turn in my resignation letter. I’m still in the fight and will in all likelihood be in treatment until they find a cure. But my husband didn’t apply for this job. And he could quit if he really wanted to. He could check out with alcohol, drugs, or literally leave like I’ve seen other spouses do. Or like some husbands...

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