And we’re back with Episode 2 of the Intersection of Cancer and Life!
Where we left off, a few weeks after I started the clinical trial drug, I began to feel really terrible. I wasn’t sure what was happening – after all, I have a three-year-old in preschool and it was January, the height of the cold season. Around that time, for whatever reason, I was looking through some of my recent test results. I hadn’t really reviewed them in depth, since there were so many different scans and, honestly, I felt so overwhelmed with the on-boarding process for the clinical trial. I figured that the scans weren’t going to be any different since they were two weeks apart, and my doctors had noted that they were unchanged. And I hadn’t heard anything about the bone biopsy, so I assumed that there was nothing particularly concerning with those as well.
Well, I noticed some notes on my bone biopsy pathology report from January 2019 that seemed a little, shall we say, alarming. I mentioned that my cancer was estrogen receptor positive – that means that my cancer is particularly receptive to hormone therapy. That was the reason for having a hysterectomy last August – to remove all of the hormones from my body. As I was reading the bone biopsy report from January, I noticed that my cancer’s estrogen sensitivity had dropped precipitously – from around 95% to close to nothing. Now, this might not seem like a big deal. It may even sound like a good thing – things are changing, right? Except it’s not a good thing. One of the challenges in treatment for metastatic breast cancer is the manner in which it can mutate and therefore render treatments ineffective. There are a number of solid treatment options for metastatic breast cancer – IF the cancer is responsive to the therapy. And cancer that doesn’t have hormone sensitivity isn’t going to be responsive to hormone therapy. And if it’s not going to be responsive to the treatment I’m currently on, what’s going to happen?
After I completely freaked the hell out, I started doing some frantic research. And anyone who has been diagnosed by Dr. Google knows that it’s never a good thing. I discovered that mutations in metastatic breast cancer are not uncommon at all – approximately 20-30% of people deal with a mutation that causes a significant shift in the way their disease is treated. This is a HUGE issue in research, and yet, it’s not really talked about – at least, it wasn’t really on my radar. On top of everything else, I had just had a second bone biopsy, as part of the clinical trial protocol, but the pathology results weren’t available yet. My December spiral was nothing compared to the black hole I found myself in during the month of February.
A year ago, I had just started my first line of treatment and anticipated the first scans. I was feeling better, and I had a feeling the scans would be ok. This was all part of understanding my new normal. I told myself that I had a long road ahead of me. But this year, after experiencing one failed drug, I feel very different. I’m coming up on 18 months (in May) of life with metastatic breast cancer. For a disease that has a life expectancy hovering around 2-3 years, 18 months feels like I’m starting to walk on thin ice, no longer on solid ground. Time feels like it’s starting to slip away much, much faster.
So we waited. We waited for my first set of scans on the clinical trial. We waited for the pathology for the bone biopsy. We waited, and hoped for the best, but expected the worst. I was so sure that my scans were going to show progression, that I was going to be facing yet another new line of treatment, that I didn’t even want to call for my results. When the nurse came on the other end of the line, I steeled myself, ready for the bad news.
The scans were stable, she said. You can stay on the trial for another two months. And better yet, the bone pathology showed a much more appropriate estrogen sensitivity. She explained that sometimes the readings can be low if there isn’t a lot of tumors present in the sample.
I had been holding my breath for so many weeks, and finally, I started to exhale. I kept repeating the news to myself, in disbelief. Stable. And even better, the bone sample didn’t even have a ton of tumor in it. So now, I have an 8 week (hopefully) lease on life until my next set of scans. If I’ve learned anything over the past year, it’s that things can change in a moments notice. But also, as I learned from this episode’s guest, that those changes can surprise you in ways you never believed possible.
My guest today is Nicole Body, a stage 3 sarcoma survivor. She is the creator and author of her website and blog, Sparkly Survivor, where she shares experiences during treatment and post-treatment while sharing words of encouragement on how to live life joyfully at the crossroads of faith and cancer. In July 2017, Nicole was diagnosed with stage 3 Undifferentiated Pleomorphic Sarcoma. Her gallbladder was failing, and she underwent 4 rounds of chemotherapy to shrink her cancer. Two weeks after her last scan, which still showed sarcoma, she underwent major surgery, with plans to attempt the Whipple procedure. However, after making a 9-inch incision down her abdomen, her doctors couldn’t find cancer anywhere. She is nearly a year cancer-free. As she says, it was a miracle. Nicole has found her voice as a writer for the I Had Cancer blog and her cancer story has appeared in the MD Anderson Cancer Center blog, Cancerwise. She hopes to publish the book she just finished writing about her journey soon and strives daily to bring encouragement to others who have battled cancer.
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Nicole Body is a stage 3 sarcoma survivor, and the creator and author of her website and blog, Sparkly Survivor, where she shares experiences during treatment and post-treatment while sharing words of encouragement on how to live life joyfully at the crossroads of faith and cancer. In July 2017, Nicole was diagnosed with stage 3 Undifferentiated Pleomorphic Sarcoma. Her gallbladder was failing, and she underwent 4 rounds of chemotherapy to shrink her cancer. Two weeks after her last scan, which still showed sarcoma, she underwent major surgery, with plans to attempt the Whipple procedure. However, after making a 9-inch incision down her abdomen, her doctors couldn’t find cancer anywhere. She is nearly a year cancer-free. As she says, it was a miracle. Nicole has found her voice as a writer for the I Had Cancer blog and her cancer story has appeared in the MD Anderson Cancer Center blog, Cancerwise. She hopes to publish the book she just finished writing about her journey soon and strives daily to bring encouragement to others who have battled cancer.
Find Nicole online:
Youtube: Nicole Body’s Cancer Journey
Beyond the Pink Ribbon 