Time to refresh my history: I have been married to the love of my life, Tim, for 33 years and we have two beautiful daughters. Kelsey is 27 and an ER nurse and Bridget is 25 and an ABA therapist with autistic kids. I am a licensed school psychologist at the high school level and I have devoted my life for the last 32 years to working with adolescents whom I love.
14 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 6 rounds and 7 weeks of radiation. Shortly after I finished treatment, my older sister Mary 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 major 16 hour surgery called bilateral mastectomy with DIEP reconstruction. I then went on an oral chemo drug for 10 years, Arimidex, which is an aromatase inhibitor or anti-estrogen since my cancer was ER+. Two years after I stopped taking Arimidex, at the beginning of 2015, I went for a spine MRI due to spinal stenosis and a bulging disc that was bothering me. 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. MBC, which means cancer that has spread outside the breast and adjacent lymph nodes, is the only kind of breast cancer that kills. It is fatal, Stage 4, and there is no cure.
Over the past tumultuous 21 months I have tried several treatments, switched oncologists and hospitals and have continued to travel—to Iceland, Belize, Aruba and California. I say tumultuous because we live scan to scan every 12 weeks and never know what direction the cancer may take. I initially fought for and was approved for Paplocyclib with Letrozole which had only just been FDA approved. It proved to be an epic fail as my cancer worsened. I moved on to Faslodex, again a fail. At that point I had a second liver biopsy that showed that my cancer had now mutated from ER+ to Triple Negative which is why 9 months of anti-hormonal treatments had not worked. With that I signed up for a clinical trial that started in January of 2016—-Pembrocyclib and Erubilin. After 3 months I began to fail drastically— losing weight, fevers, rashes. Initially it was thought that my catheter access port was infected and I was hospitalized. I developed hyper-inflammatory syndrome and complete organ failure. In a last-ditch effort to save me, I was placed in a medically induced coma for 7 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 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 5 months of Physical Therapy to follow. Currently I am chemo free—Pet Scans show a nearly 50% reduction in my tumor load and it is still continuing to shrink. Today I have gait instability, adrenal insufficiency, word retrieval issues, severe fatigue and significant neuropathy in my hands and feet as a result of the treatment with Pembro but I am alive and doing well. Next PET scan is in November. What does the future hold?
See you next time, sometime in this life,
Barbara and the gang