Tired of writing tributes

Tired of writing tributes

I went to bed a couple of nights ago with the news that my dear friend Darlene Gant passed away. I met Darlene back in 2009 at the Annie Appleseed conference, which covered alternative and integrative cancer therapies. Darlene spoke and shared how she was living with no evidence of disease without doing conventional treatment. In 2012, Darlene’s cancer came back with a vengeance and she entered hospice, but miraculously cheated death by getting approval to use the then-experimental drug Perjeta. Darlene and I have grown very close over the years, having long talks on the phone on how wonderful it is to be here for our teen kids. Her son Cam is 14; my daughter Chrissy is 16. We talked about helping others and taking vacations together, and she consulted with...

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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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It’s a bird, it’s a plane, it’s super new treatment!

It’s a bird, it’s a plane, it’s super new treatment!

You remember those Peanuts cartoons when adults spoke and it just sounded like “blah, blah, blah, blah, blah”? Yes, that’s how I get when I hear a bunch of medical/scientific terms thrown around. I have learned a lot in my 13 years as a breast cancer survivor (seven-plus years as metastatic), but sometimes I feel like I just don’t have the brain power to wrap my head around exactly how treatments work. Hence, as promised, I am going to give you a little,  albeit not very scientific, overview of my new clinical trial. Last week (Thursday), Mike and I traveled two hours to Indianapolis to get my first infusion of  MGAH22, affectionately  known as Fc-optimized Chimeric Anti-HER2 Monoclonal Antibody. Try saying that three times fast! For those...

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No expiration date: A tribute to our angel, Krysti Hughett

No expiration date: A tribute to our angel, Krysti Hughett

Last night, I lay in bed and couldn’t sleep. I didn’t know that my dear friend, Krysti Hughett, drew her last breath just an hour before. Maybe my body and soul could sense it. Krysti passed away on July 7, after more than 10 years of beating the odds of very aggressive stage IV inflammatory breast cancer. She accomplished such an overwhelming task with her determination, incredible intelligence, and tender love and support she  gave to others. Yet I can feel her presence as if she was still here. And in a way she is. It is no coincidence I met Krysti while she was helping others. It was about six years ago, and Krysti was leading a Young Survival Coalition (YSC) support conference call for stage IV breast cancer survivors. I was fairly new at the...

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Vulnerability is a very good thing – especially when you have cancer

Vulnerability is a very good thing – especially when you have cancer

Sometimes you have to hit bottom to transform your life. It is a common theme in the 12-step recovery program, and it seems to have applied to me lately. The other night I was experiencing what could be called the dark night of the soul. A lot of scary and depressing things were happening at once: 1. My oncologist confirmed my scans showed progression. She is starting me on a new trial, which looks promising (will explain in next week’s post), but it was hitting me that I am again in uncharted territory. 2. I had just returned from a trip to see a friend who is suffering and dying. 3. To top it off, I was sick from and run down from all my traveling, suffering with a cold, nausea and a pulled shoulder muscle. I had one of those “I want my mommy...

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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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