Yesterday was a great day that I'd intended to post about but was delightfully derailed.

It was a day mixed with gratitude, joy, and the blessings of friends, and incredible people in medicine who I've such incredible confidence in... and extraordinary foods at The Wild Cow (primarily vegan) in East Nashville, and Jeni ice cream (primarily fattening) and Harris Teeter and the adventure of new highways and people and stores and more friendship and laughter and the beautiful music at the beautiful Ash Wednesday service I attended at Morton.

I skibbled out of Morton before the service ended. I hobbled to my car and cried.

While our Pastor placed ashes on my forehead, I'd slipped my hands on her waist. I needed to connect. She prayed inspiring words of hope as she gently rubbed the ashes. As I found my way back to my pew I allowed my hand to softly run across other's hands here and there - or a shoulder here or there. I needed to connect.


I was especially missing my Alison. She's an essential part of my heart.





*****


So what does an old lady do whose heart is fractured a bit with no good reason at all?

She makes a very, very dirty martini with 9 little olives.

*****

Then a text message arrived from Olivia & Jen asking if I wanted to hang out.

Pfffffffffft. Of course I did. Jen rummaged through my wine cellar (cardboard box in garage) and we bellowed and hollered at Willow's door until she came down to join us.

Frivolity reigned.

I loved having these fabulous women in my living room - they were far better medicine than the martini I never quite finished. (Um, I did eat all nine tiny olives.)

Jen was dispatched to retrieve her guitar and Olivia tuned up her vocal chords for an encore performance of the song sung at the service we'd just attended at Morton. Willow and I literally swooned. If I was better with technology, I'd also post the video I took of their performance.



Jen





Olivia

*****

I can report that I'm doing well. Holding my own. In May or there abouts I face an important decision. Its gravity is staggering... and it has nothing to do with a transplant.

Once my illogical early evening disconnect passed, I realized I have a *problem* so veryveryvery many people with IPF wished they had. The following explanation is wrought with disclaimers regarding protocols etc. but this is the overview.

With as much clarity as I can muster, this is the dealio:

1. In May I'll qualify for two significant drugs. Because I happen to be in a group of people from Fibrogen's Phase 2 Cohort 2 who responded well, the pure drug will be available to me again.

2. I will most likely also qualify for the pure drug, Perfenidone. Perfenidone is currently available pretty much worldwide. Our FDA has more rigid protocols, but in approximately 12 months it should be available by prescription in the USA. Remarkably, though, for people like me who just happen to fall within certain protocols, the pharmaceutical that makes Perfenidone, is offering it before it's marketed... as a continuance to study its efficacy. They will offer it free for 2 years. This is the drug that would ordinarily cost $60,000 each year.

As I absorbed all this information, I asked about Vanderbilt's clinical trial results with Perfenidone. Of the 27 patients who were in the trial, only 5 have survived. So, the question begs to be asked, "Why the *bleep* is Perfenidone so sought after?"

*sigh* I have a lot of thinking to do. These are big decisions, which will be greatly influenced/determined by the fine people at Vanderbilt. In fact, because I know the people in research at Vanderbilt want nothing but the best for me, I've decided to base my decision 100% on their expertise. Yup, that's it! Letting go of the decision is freeing.

So, last night I was feeling overwhelmed. I wish I had simple decisions to make - like choosing between Advil and Tylenol. On the other hand, I am so veryveryvery lucky to even have this kind of decision... and shame, shame on me for whining. There are so many people like me with this devastating disease that would do a-n-y-t-h-i-n-g to have the opportunities I've been given.

*****

I chose the title of this post as a reference to Ash Wednesday and Amanda's sermon... and allowing elements of my life to die... to resurrect hope and gratitude.

****

So, today's a new day! I'm eager to embrace the ordinariness of its 24 hours. I plan to have the oil changed in my 14 year old car and the tires rotated. Yay! Might sound silly, but I'm thrilled with my ordinary agenda. It's perfectly uncomplicated.

Special thanks to Jen & Olivia for the spark in sparkle you bring into my life. I adore you.

And the rest of you... As always, thanks for listening.