I'm patching together a few updates.

I have so much to update and that's maybe why I've procrastinated... that and I've been a bit tired.

My round trip to Kansas City was 21 hours. I gleefully drove to Kansas City to attend my youngest grandson's Grandparents' Day at his school. Malcolm is in the second grade and perfectly adorable. I've observed during previous visits that he's a brilliant tinker. He loves to tinker. Minutes, hours, days can elapse and he's perfectly content with tinkering. I bet Bill Gates once was, too, and still might be. Malcolm is a most unusual child in all good ways. He and I dance to the same drummer and I suspect he knows it, too, though it's words I tinker with and not things. Malcolm is the type of person who will dismantle a computer or clock or nuclear bomb and not be able to quite put it all back together again... but it's all about the tinkering. I'm about to write my third novel. Will I ever be published? I doubt it, but it's the tinkering that keeps me writing. It's all about passion and drive and obsession.

Holy Silly-Stuff! I've deviated from my original intent here. But here are some recent pics:


Grandma Reenie & Malcolm at Pembroke Hill's Grandparents'Day


Malcolm showing me his Emu project


Chase and Bert (my son and grandson with a beer can chicken on the grill)


I took this photo while Malcolm was on the field. I simply liked the composition with the bench line-up and that no one was looking at the player on the field.

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I try not to write too much about my illness because I fear I'm liable to unnecessarily concern people I love. But here goes... and don't fret, those of you who love me and I know I'm blessed by many:

The last month I've been feeling sharp little pinpricks in my lungs. They hardly qualify as pain. A baby aspirin wouldn't even be prescribed. Yet, as I lie in bed late at night and I feel these subtle shifts in my lungs, I can't help but wonder... feel some fear of an unknown. Any concerns that might arise are assuaged by the fact that I feel GREAT! Of note, I'm using less oxygen than usual and my mood is effervescent. I'm quite jolly.

I mention this over and over again - IPF is a pulmonary disease with no pain. Those who moan and groan about pain are full of silly-stuff and are attention seekers.

So, I wonder... what is my teenie-tiny pinprick pain all about?

Sidebar: The clinical trial I'm in is one generation from lab rats. I hope you all recognize the significance of that statement. There are no placebos in my clinical trial. It's all about efficacy.

I've sailed through the infusions of Fibrogen's 3019. Google this.

Today I had an infusion. I couldn't stay awake. I slept on and off throughout the entire infusion.

Of note: When I have an infusion at Vanderbilt I'm given a private room with a private nurse. Someone from research *visits* with me before the infusion. I'm carefully watched the first 15 minutes. Every 15 minutes my temperature and blood pressure and oxygen saturation are monitored. After the infusion is complete, I'm observed for another hour before I'm released. Are you getting the drift?

I am one generation from the lab rats.

The good news is that I feel great. I don't know why I was so overcome with exhaustion.

I do know that when the doctor listened to my lungs the *crackling* wasn't as severe as in the past. She cooed how gentle and soft my lung crackles were. No one had ever said that before. I was encouraged.

So, no pain, no gain?

Life is good. Please understand that I'm in a good place emotionally. I'm alone, yet strong.

I drove to Hillsboro house through driving rain and upon entering my attic aerie, I slept for over two hours. I awoke with a stubborn headache.

As I type, all is right in the world. I never, ever mean to alarm the people who love me. It's just that I'm on a journey with no map and no companion.

I try my best. My heart flows with gratitude. I am one lucky woman.

As always, thanks for listening.