September 14, 2023. I follow a blog by Abigail Johnson—a brilliant human, wife, mother, writer, and advocate living with MBC. She is a wealth of information about just about everything MBC related providing all her followers jewels of wisdom that I value and share with others when the opportunities arise. I don’t always view what she shares through the same lens, but I respect and appreciate what she is saying and that she is so willing to share that information, warts and all. Unlike me she is ER/PR+ HER2-, while I am Triple-. She is much younger at 43 than me at 71. But she was diagnosed in March 2017 with Stage 4 MBC, and I received my TNMBC diagnosis in September 2021 after three TNBC recurrences beginning in September 2018—the last being inoperable with nodules in my lung. This was Abigail’s first diagnosis, while mine was a recurrence after a 19-year gap when I, too, was ER/PR+. Triple negative is much more challenging to treat since the available options are limited and that led me to the clinical trial I started in January of this year. In 2018 my only choices were chemotherapy, radiation and surgery.
In one of her posts, Abigail shared information about outliving the 5-year survival rate of MBC patients which is currently 29%, an unsettling number no matter how you spin it. She mentioned that number would be different for those with TNMBC. Up to that point, I hadn’t explored that dark hole, but her blog peaked my curiosity. Reading, that for me, that number drops to 12% made me grateful I was sitting down at the time. Now I see it as a wakeup call. Suddenly it made sense that when I turned 70 last year and said to Dr. Rugo that my goal was to reach 75, “That’s a good goal,” was her only response. In my brain, in big capital letters, I thought “OKAY.” What I was hoping to hear, maybe half-way expecting to hear was, “You can do better than that.”
So now that I’m armed with this statistical information, I know it’s time for me focus more on living every day. I mean really living. Do things I’ve always wanted to try. Explore more passionately. Socialize with less fear. Laugh more often. Tell those I love that I love them more often.
To that end, I leave today for a 10-day solo vacation to my home town in northeastern Washington state. I’ll be spending a good chunk of my time with my brother Monte. But I also have plans to hang out with my daughter Chanda and other family members and friends. I’m going to be staying with Debbie, someone I’ve been friends with since we were 6-years old. I’ll be seeing other old time girlfriends as well. There are no solid plans on what I’ll be doing. Spontaneous adventures are the words that best fit my vision of this trip.
When I get back I’ll be getting CT scans on the 26th and seeing Rugo on the 27th. It may or may not be Cycle 13, Day 1 of the clinical trial. At my last meeting with her on 9/6, for the start of Cycle 12, Day 1, it was decided that the CT scans will dictate what our next course of treatment will be. My scans are going to be reviewed by a pulmonologist to get his/her take on what’s happening in my lungs. The decisions we make will be based on the question, “Is stable good enough?” Or is there a course of treatment we should seriously consider that might provide a better outcome than stable. Like Abigail, I want to surpass the five-year expectancy rate. And as long as I continue to enjoy a good quality of life, there is a lot more genuine living to do.
“And those who were seen dancing, were thought to be insane by those who couldn’t hear the music”…. —Friedrich Nietzsche
lana has cancer 