Liver biopsy done, now we wait

Liver biopsy done, now we wait

On Tuesday, we left before dawn to go to Indianapolis for my liver biopsy. The tissue will be used for genomic sequencing/analyzing for the MATCH trial (click on this link for more information). My oncologist told me it will take 10 days for results to come in. I was reassured by a coincidental connection to the trial. One of my dearest and long-term friends, Jami Elliott, actually works for the company that manufacturers the diagnostic equipment used for the genomic sequencing. He knows a lot about the process and assured me that the process is state of the art and my tissue will be thoroughly and accurately analyzed. The actual biopsy was not too bad. I was anticipating a long recovery, but three days later, I am feeling better and less sore. I did have to lay...

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Update on me: physical, mental and spiritual

Update on me: physical, mental and spiritual

“Hope expects an answer sometime in the future; faith takes it as having already been given.” -H. Emile Cady I have been stalling writing a blog post, mostly because I strive to be totally honest here, and I don’t want to worry you all. Another reason is I wanted to have a game plan to share with you rather than leave you up in the air. I am facing a scary time right now. The cancer has grown to the point that it is affecting my bodily functions. Last week, I was in two emergency rooms for almost a day and hospital for two days due to a partial bowel obstruction. (For my husband Mike’s update of events leading up to this, click HERE.) They took me off the clinical trial that I’ve been on as it obviously is not working at all. It is...

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Surrender is the not the same as giving up

Surrender is the not the same as giving up

The serenity prayer is a great source of comfort to me. It says it all to me:  “God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. For many years, I’ve been hitting heavy on “the courage to change the things I can” part. The acceptance thing is what trips me up a lot of times. There has just been so many unacceptable things thrown my way – a terminal diagnosis, cancer progression despite doing everything in my power to contain it, friends dying left and right. How do you accept that? I went into this with a full-power-on, fix-it approach. I changed everything in my life and refused to accept my imminent demise. After all, my first words upon...

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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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