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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Roller coaster report: My new treatment

Roller coaster report: My new treatment

I know it’s a trite analogy, but having stage IV cancer is really like being on a roller coaster. I used to brace myself for every drop, but lately I’ve learned to just hang on tight and go along for the ride. I can’t get off after the ride has started, so I have no choice than to trust I’ll get through it. Note: this analogy may not work for those of you who love roller coasters! As those of you who follow me know, I was so excited my treatment (Ibrance and Femara) was FDA-approved, ending my monthly back and forth trips to Chicago for the trial. I was feeling great and looking forward to a hopefully long run on the duo. Then came my scan, a couple of weeks ago. Last week I finally got a hold of my consulting oncologist at Indiana...

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My crappy, un-crappy day

My crappy, un-crappy day

I am having a semi-crappy day. The un-crappy part is I got a great massage from my Cheryl, my oncology massage therapist. Thanks to Cancer Family Care, I have been getting these at half the price as long as I’m in treatment. The other un-crappy part of my day has been spending time with my wonderful, loving and fun daughter Chrissy. We just did normal activities – getting her yearly physical from her pediatrician, running errands and letting her drive for practice. But I know how precious each of these moments are in the precarious world we live in. Now for the crappy part. I share this because it needs to be shared. Because we all should allow ourselves to feel crappy once in a while. It’s OK not to be 100 percent positive. As I wrote about...

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From Survivorville to “Scanville”: My road back to reality

From Survivorville to “Scanville”: My road back to reality

I came back from an absolutely exhilarating time at the Survivorville, a women’s cancer conference in Nashville. Not only was the venue beautiful – The Gaylord Opryland Hotel and Resort – but the women I met were too, inside and out. The two highlights were 1) meeting fellow stage IV survivors/co-survivors who were volunteers and at my breakout session: The Buck Stops Here: The Power of Becoming Your Own Advocate, and 2) reading my story for My 2nd Act: Survivor Stories from the Stage. I was in awe of the nine other women and two little girls, who shared their stories of struggle, loss, inspiration and hope and how they transformed the life-changing experiences with cancer to a new way of life. For instance, Ariana and Naveya, the two girls...

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Talking about Mets in NY — No not the baseball team

Talking about Mets in NY — No not the baseball team

I’ll make this quick because I am so busy this week. I just returned from NYC where I was a participant of the Novartis’ Advanced Breast Cancer Advisory Panel. This is the second time I have done this, and I have to say I’m very impressed with the company’s interest in listening to the views and needs of those of us with metastatic breast cancer. It was an interesting discussion with some powerhouse bloggers and advocates. I felt honored to be among them. They gave us plenty of time to express our views/experiences. One question prompted us to share bad experiences with doctors, and we all had our stories to tell. It was agreed that doctors need to spend more time with patients and be more empathetic. And if a patient isn’t...

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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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