Surviving Survivorship: Cancer Treatment-Related Late Effects

A dear friend and fellow survivor who died several years ago of heart failure caused by mantle radiation and doxorubicin had a blog entitled 'Surviving Survivorship.' She made me promise to use that term, phrase, idea, reality in a way that would benefit other adult survivors of childhood and AYA cancers. It's taken me this … Continue reading Surviving Survivorship: Cancer Treatment-Related Late Effects

Being Heard

This post is going to be about how important being heard has been to me across the years since my diagnosis in 1978 as late effects have surfaced, and in many instances, persist. but first For some reason, I decided to look for an image to pair with the post before I wrote a single … Continue reading Being Heard

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

Happy Dance

We used to have a 'happy dance' tradition in our family. When we received good news or reached a milestone, we would do a goofy, happy dance together as a family. My husband and I started this in the early years of our marriage and our son delighted in them throughout his preschool, elementary years. … Continue reading Happy Dance

Working Smart: the Basics

As anyone with limited stamina for whatever reason knows all too well, you have to work smart, so here are some of my best tips, tricks, and props regarding the basics of 'the daily', so to speak. Plan: I have a bullet journal that houses the daily 'to-do' list; I review every day always looking … Continue reading Working Smart: the Basics

Game Day Rituals

Game Days as defined by this survivor are days filled with routine follow up surveillance appointments [and] diagnostics (mammograms, MRIs, ECHO)tests. Game days can evoke a great deal of anxiety as you well know and I dare say that we all have 'game day rituals' we go through to minimize our anxiety and the impact … Continue reading Game Day Rituals

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

One Step

"A journey of a thousand miles begins with one step." ~Lao Tzu I glanced at the date today and remembered that on this date 11 years ago, I began a journey by taking a single step literally 61 days after my heart transplant. It was a milestone, a red letter, write home about it kind … Continue reading One Step

What’s It Like?

It's not uncommon that I am asked: "what's it like to have someone else's heart beating inside your chest". As you can imagine this isn't a "hi, how are you?" type of question where you reflexively answer "I'm great; you?". No, the answer to this question is multi-faceted and quite complex involving the heart, body, … Continue reading What’s It Like?

heartSTRONG

Yesterday, I had a routine transplant check up which included an office visit with my nurse practitioner and my local transplant cardiologist as well as labs and an echocardiogram (ECHO) which is an ultrasound of the heart to evaluate structural integrity and heart function. Now that I am 11 years out from my transplant, these … Continue reading heartSTRONG