Total Body Skin Check

Well, my medical year in review includes something that I believe gets looked at every day, but it all to often overlooked in the care of the adult survivor of childhood cancer who received radiation. I will link to the Children's Oncology Group/s risk factors and guidelines at the end of the post. This year … Continue reading Total Body Skin Check

Self Care: Rationing my Energy

When a resource is limited, the resource is rationed; it's that simple. So, when the resource is energy, it is rationed just like other scarce resources. I ration my energy on a daily basis as a matter of self care, and some days I do a better job than others. Now, if you know me, … Continue reading Self Care: Rationing my Energy

Rosemary

" Rosemary, that's for remembrance." ~Shakespeare   Grief and depression are often exacerbated by the holidays; we tend to look back,  remember Christmases past, and for some of us, the whole month holds dates of great significance in our lives. I was admitted to Children's Hospital in Pittsburgh on 12/11/78 [and] diagnosed with Ewing's sarcoma … Continue reading Rosemary

Advocacy, the Highest Form of Self Care

A little something happened last week that bears mentioning as a means to encourage, empower others to speak up on behalf of themselves because no one will EVER be as invested in your outcome as you are. Advocacy is the highest form of self care. On the day of my second home health visit, the … Continue reading Advocacy, the Highest Form of Self Care

Thanksgiving Debrief

That moment that I found myself in the hospital the week before Thanksgiving and it finally hit me; 'I can't do this'. So, I made an executive decision to cancel Thanksgiving meaning that I could not possibly host those we'd invited. My husband has an international travel component to his job as a software engineer … Continue reading Thanksgiving Debrief

Repondez S’il Vous Plait

Repondez S'il Vous Plait, French for 'please reply', is one of the most frequently violated rules of etiquette of our time. According to *Emily Post, the appropriate response to a formal invitation is to respond according to the manner indicated on the invitation itself. If no method is indicated, then a handwritten note or a … Continue reading Repondez S’il Vous Plait

Pace Yourself

When I woke up from my heart transplant, I had these wires called pacing wires that would pace my heart rate up or down depending on what was indicated at the time. There are times like the holidays that I wish I had pacing wires to slow me down when I am exceeding my limits, … Continue reading Pace Yourself

Shared Decision Making

I met with my PCP, Dr. Pepper, a couple of weeks ago, to discuss a plan for lung surveillance moving forward. I had several things on my heart and mind that I felt we needed to plan for in the future specific to potential late effects. I have several unique 'things' that place me at … Continue reading Shared Decision Making

Childhood Cancer

Forty-three children are diagnosed with cancer every. single. day. which adds up to roughly 16K children from birth-19 each year. Presently, there are approximately 350K survivors of childhood cancer. Cancer is the #1 cause of disease-related death in infants, children, and teens; it is also the #1 cause of disease-related death among the 70K young adults … Continue reading Childhood Cancer