Barbara Bigelow

Barbara’s Story

I have been married to the love of my life, Tim, for 38 years and we have two beautiful daughters, Kelsey and Bridget, 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! 

In 2002, I was diagnosed with breast cancer after my two older sisters had also been diagnosed. (No, we do NOT have a BRCA mutation.) 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—six weeks after it metastasized to her brain. I had 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+.

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 at barbigwire.com), 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, includes music and of course, my love for Lucy, Calvin and Hobbes and Life of Pi. It 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 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. With that, I signed up for a clinical trial with immunotherapy that started in January 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. 

Most importantly, I have been on the Board of Directors at a nonprofit, Metavivor.org, 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.

Questions and Answers

How and when did you first learn you had cancer?

I was diagnosed with stage 2 breast cancer in 2002, metastatic breast cancer in 2015, and lung cancer in 2020. At the time that I started the clinical trial for metastatic breast cancer in 2016, I had seven tumors in my liver, a tumor in my peritoneum, and a tumor in the lymph nodes at the base of my spine. I had broken ribs and a broken sacrum from micro-metastasis.

How did you learn about immunotherapy and why did you decide to do it?

I learned through a repeat liver biopsy that I had mutated from ER+ breast cancer to Triple Negative, a more aggressive form of metastatic breast cancer (MBC). My oncologist at DFCI looked at different trials that were available and recommended pembrolizumab with erubilin. I jumped at the opportunity. There wasn’t a lot out there for TNMBC and this was the Jimmy Carter drug!

What was treatment like? Did you have any side effects?

Too many—rashes, hair loss, weight loss, loss of appetite, constant nausea, neuropathy, fevers, fatigue etc. Ultimately I crashed and was hospitalized with a suspected port infection that devolved into hyperinflammatory syndrome. I was intubated in the ICU and put on hemodialysis. It was and, still is, the worst experience of my life. I have PTSD from it. Yet, it worked! It pushed me into remission and I have not had any cancer treatment in over five years. 

How did immunotherapy compare to other treatments you may have received, if any?

It was really hard, but I was very determined and stubborn. I worked full-time while this was happening. I felt myself recede as a person, drawing inward more and more, and not really able to communicate the distress I was in. 

Are there things that surprise you about the cancer experience?

At this point, not really. I have been at this a long time, since 2002 and my sister died of MBC. I am a patient advocate and speak to women and organizations all the time about MBC. I see myself as both inspiration and cheerleader for others dealing with hard treatment decisions.

What would you want another patient to know about immunotherapy or about participating in a clinical trial?

Obviously it was worth it as it pushed me into long-term remission, but the consequences were permanent: adrenal insufficiency, balance issues, neuropathy and word loss. You have to consider the risk vs benefit consequences.

For me, those results were worth it. 100%