Tagged with Emory

Twelve

It was going to be awkward having to tell all of you who’ve been praying, thinking of us, crossing fingers, sending well wishes and good vibes that you didn’t put enough effort into it all. Good thing I don’t have to have THAT conversation with you. Now that would’ve been awkward. We’re boasting a 12-0 … Continue reading

Ugh

  I’m dreading my MRI tomorrow.  I’ve said it before and I’ll say it again, this process is like playing Russian Roulette with a loaded gun. I’ve managed to survive 11 empty chambers and now I’ll wait tomorrow to see if the 12th chamber will serve up a blank or a bullet. Thank God for sedation and the lingering after effects … Continue reading

The Dialogue

Some moments just stick with you. A moment not out of the ordinary in my realm, but it’s provided some reflection on where life and this piece of shit brain tumor has brought us. At a Patient Family Advisor Council meeting last week at Emory we were progressing through introductions when a profound dialogue occurred. There … Continue reading

Shocked

It’s fair to say that not much of anything shocks me anymore. Maybe life, and this piece of shit brain tumor, have jaded me a bit as I’ve adjusted to a life full of insane (now normal) things and events. Don’t get me wrong, plenty in life is surprising and downright disappointing; such as toothpaste in the … Continue reading

Revisiting

I had the opportunity today to tour what had been my home for a little over a day. Unit 31, the Neuro-ICU at Emory Hospital Midtown. Beginning my tenure this morning as a member of the UPC (Unit Practice Council) of Unit 31 as a Patient and Family Advisor, I knew I was going to revisit and … Continue reading

730

730 days ago tomorrow, everything changed. I signed on the dotted line. Page after page of dotted lines I signed. Thinking all the while that I must have already lost my damn mind. It had to be good and gone if I was willing to give someone the opportunity and privilege to remove a piece … Continue reading

Moments That Give Pause

This post was challenging to write and I’ve hesitated. Hesitated because I don’t believe this is how the majority think or how they work or interact. In-fact, I believe it’s a small minority who, whether burned out or over worked; they’ve lost a connection to the work and people they’ve pledged to help. I write … Continue reading

What’s Worse?

Since our beloved piece of shit was discovered before it actually had a chance to show its nasty side with seizures and profound headaches, I suppose you could say that we hit the jackpot. The pot of gold at the end of the rainbow where you discover your fate but the sticker on the pot … Continue reading

So here’s the thing…

It’s very difficult balancing being an advocate while being a patient at the same time. The lines get blurred and in the end, no matter the situation, I’m still a patient and there’s no escaping that. I had the privilege to speak yesterday at the annual Mini Brain Tumor Symposium held at Winship Cancer Institute … Continue reading

54

In my post Tactical Diversions and Spontaneous Entertainment, I promised to share more about what my “Magical Magnetic” experiences are like and give you a sneak peek. I hate to disappoint, but I have no superpowers yet. I still get smoked in Mario Karts by Tucker and to Paul’s disappointment, magnets when tossed at me, … Continue reading

Warning: Currently Under The Influence

Thanks to an early afternoon IV cocktail of sedatives to get through my MRI for a nasty case of claustrophobia, I just woke up from a nap and am just about ready to climb back into bed and sleep the rest off. Playing patient is so exhausting. My phone is lighting up like a Christmas … Continue reading

For Those Who Just Must Know

Maybe it’s because I have two boys. Maybe it’s an undying curiosity and an inability to respect personal and private boundaries. Maybe I am too sensitive to the subject. Nevertheless, I am asked all the time if I want more children. If I want to try for “that girl”. I’m asked if three boys are … Continue reading

Sharing, Unexpectedly, A Story About Day 1

I volunteer my time as a Patient and Family Advisor for Emory Healthcare as a part of their Patient and Family Centered Care initiative. Working in partnership with administrators, physicians and nurses, I participate in the planning, delivery, and evaluation of healthcare at Emory.  Simply put, it’s about including patients and their families as integral … Continue reading