Heart Failure: the Backstory

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 down and dirty, 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 … Continue reading Heart Failure: the Backstory

Symptoms, Swabs, and False Negatives: an Update

Symptoms, swabs, and false negatives led to my extroverted self being quarantined in our guest room for a few too many days at the end of March. On Tuesday 3/24, I developed a scratchy throat followed in short order by a temperature of 100.2F which scored me a ticket to get swabbed for COVID19. Three … Continue reading Symptoms, Swabs, and False Negatives: an Update

Vulnerability and a Globetrotting Virus

There is nothing quite like a globetrotting virus completely unknown to the human body and invisible to the naked eye to evoke feelings of exposure, vulnerability, uncertainty, anxiety, and fear of the unknown. Am I right, or am I am right? I know I am not alone in sitting with these feelings because I understand … Continue reading Vulnerability and a Globetrotting Virus

Late Effects: Anxiety, Depression, & PTSD

Today, I am attempting my first EVER Facebook LIVE with a closed group Surviving Survivorship that I recently created in an effort to raise awareness regarding late effects of cancer treatment months, years, even decades out from the end of treatment. If you are an adult survivor of cancer diagnosed from birth up to 39 … Continue reading Late Effects: Anxiety, Depression, & PTSD

REALity Check

I recently watched Suleika Jaouad’s TEDtalk and so much of what she said resonated with me not so much as a childhood cancer survivor but as heart failure [and] transplant survivor. She addressed the myths that are played out in social media using adjectives like “untrue”, even “dangerous” as they “erase” the very REAL challenges … Continue reading REALity Check

Med Schedules & Time Zones

There are lots of things to consider when you’re not in ‘your Kansas’ anymore; med schedules & time zones being 2 of them for me. As a heart transplant recipient, I will take anti-rejection medications every 12 hours sharp for the rest of my life. It’s not a big deal; it’s become part of my … Continue reading Med Schedules & Time Zones