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Post Operative Words

TRIGGER WARNING – this isn’t pleasant. I had my surgery. It went well. My arm is healing. I don’t have cancer. I had my surgery. My shoulder was sore from the brace I wore to my post op appointment to have the surgical tube pulled. I decided to have a massage. The man who gave me my “massage” sexually assaulted me. I had my surgery. I spent time in the back of a police car. I identified my assailant. I spent time in the 19th precinct. I was alone the… Read more Post Operative Words

The Journey to Well

The inevitable events that led me to write Heart Warriors began on December 30, 2002, the day in my pregnancy when Liam was diagnosed. The earliest drafts were written in 2008 and promptly discarded. I’d never written a book before and didn’t know what I was doing. I joined some writing groups, read a ton of books, and finally started and finished the book very quickly in 2010, the same year I finished graduate school, fundraised for and attended our second Hearts United event, launched the inaugural Congenital Heart Walk,… Read more The Journey to Well

Letting Go – or Goodbye to All That

A week from now I’ll be in NYC and the following morning I will be unconscious. The best doctor I could find in the USA is going to cut my arm open into quarters, cut through muscles, and ever so gently but firmly cut away this large tumor that right now makes the palm of my hand hurt for no reason. Actually, the reason is that the tumor is attached to and compressing my nerve sheath. So I get all kinds of weird pains, like sometimes it feels like a… Read more Letting Go – or Goodbye to All That

Pre-Op Preface

Hello friends. I am happy to report after spending the better part of the day at Memorial Sloan Kettering that my tumor while not definitively benign is not a metastatic form of sarcoma. It may be a non-metastatic form of sarcoma or a precancerous mass, or a benign but unusual mass. It really doesn’t matter which of those three things it is because all three require the same surgical “cure,” and all three can cause the nerve damage and deformity that my current tumor is causing. So, it’s gotta go… Read more Pre-Op Preface

48 hours from now

In 48 hours I will be close to landing in New York City. I will go to a hotel, I will have dinner. The next day I will be meeting the head of the Sarcoma clinic at Memorial Sloan Kettering. I will have an MRI, I will find out if I will have a biopsy. I will find out if I have cancer. I will find out when I will have surgery. I will not be coming home right away. In 41 hours I will tell my husband and children… Read more 48 hours from now

The Vulnerable Parts

Last November I attempted to take a year long break from Facebook, and with a few exceptions I was successful. The first exception was confirming the anniversary date of a loss I experienced. It seems PTSD will remind you of things you haven’t written on the calendar. We have our own biological calendars. I was right, it was that day. I looked it up and left. The second exception was checking in on a friend going through cancer after having a dream about her. She was doing ok, but this… Read more The Vulnerable Parts

Kill Your Darlings

Until two hours ago, I had almost 400 blog posts here that I’d written since late 2011. I deleted 171 of them. I’m not the same person I was last month, much less seven or eight years ago. I’ve changed in so many ways that I can’t even begin to explain in blog posts. I believe I’ve changed for the better, but no change is painless or easy. There are still well over 100 blog posts I’ve not deleted, please enjoy those while I rebuild my website and my life.… Read more Kill Your Darlings

Just a Dream

6 If I can stop on heart from breaking, I shall not live in vain: If I can ease on life the aching, Or cool one pain, Or help one fainting robin Unto his nest again, I shall not live in vain. ~ Emily Dickson, Book 1 — Life Friday morning I planned to swim, but just before the alarm sounded at 4:40 am I was lost in a dream. I was holding a lovely little dog, a puppy, who had a heart defect, and nothing could be done for… Read more Just a Dream