By Kristen Carter
The medical part of my story
My first brush with breast cancer was in 2008, when my annual mammogram spotted something suspicious in my right breast. A needle biopsy showed it to be ductal carcinoma in situ (DCIS); what my radiologist called Stage 0 breast cancer.
I soon found myself in the office of the city’s (Johannesburg, South Africa) preeminent breast specialist, who told me from the beginning that her approach was aggressive. For someone with “busy breasts” like mine, she recommended a double mastectomy, with or without reconstruction; my choice.
But I couldn’t get myself to have something so radical done to my body. It was only Stage 0 after all! There was no spread to my lymph nodes and no other signs of cancer in either breast. Instead, I opted for a lumpectomy, followed by an oral estrogen blocker. Because there had been no history of breast cancer in my family, I thought this was a fluke; I was confident that with careful monitoring, I could prevent a recurrence, or at least catch it early.
I was diligent about follow-up mammograms and ultrasounds, but in 2018, I got the shock of my life: not only had cancer come back, it had spread throughout my body, mostly to my liver and bones.
I didn’t even find out from a mammogram; I went to my primary care doctor after my skin started itching all over and the whites of my eyes had turned yellowish; I thought I’d picked up hepatitis! The truth was so much worse: tumors were blocking the bile ducts that drain from my liver into my digestive tract, and the bilirubin was flooding my bloodstream.
My new oncologist said that Step One was to try and open those bile ducts; until then, my body wouldn’t even be able to handle chemotherapy. The first surgical procedure to try and do that was unsuccessful, and things were looking bleak. My bilirubin levels were soaring. Fortunately, a new surgeon was brought in and the second surgery was successful. Within a couple of days, I was on a massive dose of carboplatin; an old-school chemotherapy they hoped would begin shrinking my tumors, particularly the ones in my liver. Once my liver was functioning, they could put me on the hormone-targeted therapies appropriate for my estrogen-receptive cancer.
I got better. My cancer responded and by late that year, my cancer had receded throughout my body. But the joy was short-lived: by Spring 2019 it was back again, spreading even further through my spine, ribs, and pelvis. Further hormonal treatments weren’t making a dent in it.
My oncologist wanted to try one more hormonal treatment, but his outlook was pessimistic. He even told me once that, with the average life expectance of someone with metastatic breast cancer (MBC) being between two and five years, some people had to be on the low end.
I left that doctor.
I found someone at our region’s number-one hospital who would take me on as a patient, and she immediately put me on a drug (capecitabine, or Xeloda), that is not specifically for breast cancer but for a variety of metastatic cancers. The side effects were known to be severe, but she thought it was my best bet at the time.
Thankfully, it worked and continues to work. I’ve now been on it for more than two years and at this writing (November 2021), my scans and bloodwork continue to show no active cancer.
The personal side of my story
From the day of my diagnosis, my many external roles and responsibilities faded into nothing. I had been working as a certified positive psychology and family coach for many years and had several hundred people on my newsletter mailing list, and I closed up shop like *that.* I sent an email to clients and subscribers saying I was on medical leave, and turned my attention fully toward healing and spending precious time with my family.
If you ever want to know how much something means to you, just imagine it being snatched away. That’s how I felt about my life and the loves of my life: my husband, son, and daughter; my father and brothers; and my dearest friends. They continue to be my primary focus; nothing else will ever matter more than me and my people. Even though I have slowly started building up my coaching and my writing, I will never feel more devoted to my work than to myself and those I love.
The roller-coaster ride of treatment and watching my numbers go up and down was and is exhausting; I’m sure you can relate. But I have found some effective ways to cope with some of it, drawing on all the useful coaching tools I learned and used to teach other people. Now I use them on myself, often with real success. I keep a gratitude journal. I plan my life around six categories that I drew from positive psychology (“the science of well-being”) that I crafted into the acronym “SIMPLE:”
Success (as I define it)
Inspiration/interests – what fills my bucket and what I like to learn about and do
Meaning – offering things to others: time, energy, money, the lessons I’ve learned
People (the most important category, in my opinion; it just comes fourth because of where the P falls in the word simple)
Living – tending to my body, mind, and spirit
Engagement, or what makes me lose track of time
It isn’t always easy or smooth sailing. Scans can still bring on fear, as can my wandering thoughts. Panic, even. But I am grateful for the practices that bring me back to center; that bring me back to ME.
If there’s one gift I’ve received from getting MBC, it is a clearer vision of what really matters to me. Thankfully, I’ve had some time to put that into practice: to care more lovingly for myself, to decide what really “fills my bucket” and get as much of that as I can, to heap love on my family and friends, to create things (such as my children’s baby albums, finally—they are 25 and 23!), to spend time in nature, to whittle out things and people and responsibilities that don’t serve me anymore.
I don’t know if I’d go so far as to say I’m grateful that I acquired MBC, but I can honestly swear that I am grateful for the lessons I’ve learned and the true-me I’ve found because I did. I’ll continue learning this as long as I possibly can. I hope that’s a long time.
Kristen Carter is an author, coach, and blogger living with MBC. She is based in the mountains west of Boulder, Colorado. You can read her blog at www.kcarter.com/blog.
Thank you for sharing your story, Kristen. SBC loves you!
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