In reviewing my posts, I realized that there isn’t a post explaining why at 38-years of age my heart failed, and ultimately, died.
So, here’s the bullet point backstory:
- 1978: diagnose with Ewing’s sarcoma, a soft tissue cancer; I was 8- years-old in the third grade
- My parents were not given much hope that I would survive beyond 6 months
- The recommendation was that they take me home, and the medical team would keep me comfortable as I died
“To try and fail is at least to learn; to fail to try is to suffer the inestimable loss of what might have been.” ~Chester Barnhard
- My parents would not fail to try. Having their little girl and her future to gain, they registered me on a clinical trial involving treatment with multiple chemotherapeutic agents (vincristine, cytoxan, doxorubicin, and actinomycin-D) and high dose radiation to the primary tumor which was located in my left chest wall
- Seven cycles and 30 radiation treatments later, I was quite miraculously still alive.
- I went on to outlive the follow-up portion of my protocol at which point my pediatrician in collaboration with my pediatric oncologist recommended annual check-ups and a chest x-ray.
- At 5 years, my team would have liked to say I was cured; however, with Ewing’s one “never knows”.
- Me, what did I know at the time; I mean seriously, I had been sick, really sick, I took the medicine, and as far as I was concerned the Ewing’s was in my past.
- With time, I would learn that cancer treatment comes at a price [and] the price was long term side effects (aka late effects)
- I learned that I carried a very high risk for heart failure, second malignancies, infertility, and restrictive lung disease.
- I went on to graduate from high school, college, and graduate school and became a pediatric oncology nurse, then nurse practitioner.
- I married at 24 and we welcomed
- Our first born, only born son when I was 33.
So far, so good.
- December 2007: valve repair surgery that unmasked a heart that was damaged beyond repair
- February 2008: my heart began to fail Due to the combined effects of chest radiation, doxorubicin, and actinomycin-D at 38.
- April 2008: I underwent a heart transplant
There are no words adequate enough to express my gratitude to and for my donor’s family. As I stand amazed at their generosity amidst their catastrophic loss, I consider it an honor and a high privilege to carry her heart within my chest.
Never forgetten; always remembered; forever thankful.