Barbara Bigelow: One Tough Unicorn
About Me:
I have been married to the love of my life, Tim, for 38 years and we have two beautiful daughters and one grandson. Kelsey is an ER nurse, and Bridget is a health and wellness guru. I am a licensed school psychologist at the high school level, needless to say, I love kids!
19 Years Ago:
I was diagnosed with breast cancer after my two older sisters had also been diagnosed. (No, we do NOT have the BRACA gene). I took a year off from life to have a lumpectomy, sentinel node biopsy, ancillary node dissection, chemotherapy with AC for six rounds and seven weeks of radiation. Shortly after I finished treatment, my older sister, Mary Lou, died of metastasized breast cancer–6 weeks after it metastasized to her brain. This culminated in my having my ovaries and fallopian tubes removed and a bilateral mastectomy with DIEP reconstruction. I then went on an aromatase inhibitor for ten years since my cancer was ER+.
Living with MBC and Blogging:
Three years after I stopped, at the beginning of 2015, I went for a spine MRI due to spinal stenosis. It was incidentally discovered my breast cancer had metastasized to my liver, a few lymph nodes, and under my right kidney where a solid tumor had crushed my ureter and destroyed my right kidney. Stage 4. We were off and running… During this time I decided to blog about my experiences (The Cancer Chronicles) mostly so I could tell my children about myself and maybe a few life lessons along the way for the inevitable time when I would die. My blog, sometimes funny, sometimes serious, always includes music I am attached to at the moment and of course, my love for Lucy and Calvin and Hobbes and Life of Pi. It always chronicles the truth about living with MBC. I am still shocked when people tell me it touches them or teaches them something about how best to live life. I am beyond grateful to have the opportunity to share my life with the community and to feel in some small way I may have helped someone somewhere when they needed it most. Over the past tumultuous six years I have tried several treatments, switched oncologists and hospitals and have continued to travel, a promise my husband and I made the first time around—to Iceland, Belize, Aruba, Italy, Ireland and Scotland, Colorado, Texas, North Carolina, Arizona and California. After several failed treatments, a second liver biopsy showed that my cancer had mutated from ER+ to Triple Negative.
Clinical Trial, Miraculous Remission:
With that, I signed up for a clinical trial with immunotherapy ( Pembrolizumab and Erubilin)that started in January of 2016. After three months, I began to fail drastically. I was hospitalized with hyper-inflammatory syndrome and complete organ failure. In a last-ditch effort to save me, I was placed in a medically induced coma for days and given a less than 10% chance of surviving. Steroids, at a massive dose, were administered, as well as hemodialysis. Miraculously it worked. After a month in the hospital and a 42-pound weight loss, I was transferred to an acute rehab facility for another month so I could re-learn how to walk, swallow, sit up, use my hands, etc. I managed to get off hemodialysis too. Seven weeks later, I went home with five months of Physical Therapy to follow. Currently, I am treatment free and have been for over five years—the unicorn!
Today:
I have gait instability, adrenal insufficiency, word retrieval issues, fatigue, and significant neuropathy in my hands and feet as a result of the immunotherapy, but I am alive and doing well. Along the way I was treated for melanoma after a life spent in the sun, and more recently, early stage lung cancer for which I had a lung resection in October 2020. Most importantly, I have been on the Board of Directors at a non-profit, METAvivor since 2019. This work is entirely focused on raising money to fund desperately needed research for metastatic breast cancer. You may recognize me from my usual stint at the registration desk at the DC legislative Stampede for Metavivor, the 2018 Elements Campaign, (#thisismbc), with my daughter Bridget, the Count Me In video for the MBC Project, live streaming from LLBC about the MBC Project, walking in New York Fashion Week 2019 (#notjustone) or driving the Metavivor RV around the East Coast. In addition, I have raised a combined total of over $100,000 for MBCN and Metavivor through Booty for the Battle, Celebrity Bartending, and the Metaribbon Challenge.
I find it difficult to carry on sometimes knowing my time here is short and there is so much to do. Despite this, I believe that love always shows up, kindness matters.
Photos of Barbara courtesy of the metavivor.org You can follow Barbara's story at her blog, The Cancer Chronicles, at barbigwire.com.
