Barbara Bigelow talks about her experience with metastatic breast cancer and what walking in the AnaOno fashion show means for her.
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I'm Barbara Bigelow. I was diagnosed metastatic in 2015 after a 13-year remission. I metastasized to my liver; my peritoneum; my 6th rib, which I broke; and some nodes in my back. In the past 3 years, 4 years I mutated from ER-positive breast cancer to triple-negative, which is really unusual — most people don't mutate, and I became triple-negative.
So I did a clinical trial at Dana-Farber, immunotherapy combined with chemotherapy. I did that for 3 months, and then I developed a high, high fever, and I ended up in the hospital. They thought my port was infected, they took it out. I ended up being in a coma for 10 days and had a hyper-inflammatory response to the immunotherapy and all of my organs were shut down, and I was put on dialysis, put in a coma. It took them awhile to figure out what to do, because I was one of the earliest people to do this. They were treating me with antibiotics, which was the wrong thing. They finally, somewhere in the 10 days there, they switched it to high, high dose of steroids, and that reversed what was happening.
I woke up, but I couldn't walk, and I couldn't swallow, couldn't use my hands, I was a mess. So I was on dialysis, which helped to clear the toxins from my blood, and I kind of came around. And then I spent a month in the hospital recovering, and then they transferred me to an acute rehab hospital, where I had 4 hours a day of physical therapy and dialysis. And that went on for a month. So I was 2 months away from home and dying, dying to go home.
Anyway, I made a complete recovery except I have damage to my adrenal glands so I have to take steroids for the rest of my life, and I have balance issues. But I have been NED, no evidence of cancer [disease], for the last 3 years, and I've not been on any treatment. So I'm kind of the unicorn in my world. It's been really an amazing ride, because I'm sort of living the life. My husband and I retired, and we bought a house on the Cape, and life is good.
I'm really excited about the show. I was invited because I participated in the Elements campaign for METAvivor with my daughter, so they asked all of the people that did the Elements campaign to be in the show. I'm super excited, I'm really nervous... I've NEVER done anything like this. So yeah, it means a lot to me. It's this great confluence of advocacy work that I've been doing for 4 years and being with people that I really love and adore.