I have several posts to make and various slide show compilations and I just spent the most remarkable life-changing week with the most remarkable people ever at Shakerag and I have a gazillion photos and even more memories... but I'm starting with the most important news. Well, not really. All my posts are important to me.

Today was an unexpected banner day. It was a winner, winner chicken dinner type of day.

I spent a large portion of time at Vanderbilt Medical.

The drive this morning was easy-peasy despite some rain and accident-stalled traffic closer to the city, but I'd allotted extra time in case there were dribbles of Bonnaroo traffic to deal with. (For those of you who don't know about Bonnaroo, you can Google it. Essentially, it's Tennessee's version of Woodstock.) My arrival at Vanderbilt was spot-on-time and the remainder of the day, seamless.

Because I'm in a clinical trial, there are usually questionnaires with ordinary questions like, Has shortness of breath interfered with sexual activity? My mind immediately pondered the relevance of this question to IPF. If I recall correctly, good sex always took my breath away.

Next on the agenda was the dreaded weigh-in. Mind you, I've just spent 6 days at Shakerag feasting on the most glorious foods ever (heirloom, local, artesian, organic... all insanely amazing, but like I'm fond of observing, even blueberries have calories, right? I was certain I'd gained weight. There are many of you that may not know that Vanderbilt has the most rigid protocols of all the transplant hospitals and I've been trying to lose 2 pounds for 6 months.

"Oh shut up!"

Well, I nearly fell off the scale when I discovered I now only have to lose 1 pound.

Next came the PFTs (Pulmonary Function Tests). These tests are 100% painless but I've become weary of them as all patients eventually do. There's a lot of huffing and puffing involved. The huffing and puffing isn't the problem, it's knowing that all the huffing and puffing means something to the clinicians and that a poor puff can indicate unfortunate implications.

******

Later, after all the test results had been processed, it was explained that my PFTs have not changed! Yikes! Yippee! Can you even believe it? GET OUT OF TOWN!

Next - and so very, very important: Since my diagnosis and 36 weeks into the clinical trial, my IPF disease has improved by 5%. This is so significant for me and future patients.

It was a banner day!

I celebrated by meeting up with David who's in Nashville this summer studying for the TN Bar. Panera was our destination and I noshed on a bagel and cream cheese. (I'll worry about losing that 1 pound tomorrow.)

The only dark side to all this good news is that I have only two more infusions and I probably won't qualify for the next trial because of the Cohort I was in... but exceptions are made. I do realize, too, that once I'm no longer receiving the infusions and in the event my health worsens, then that becomes valuable information for the pharmaceutical company, as well. I must always be mindful of the humanitarian factors.

We'll tackle that bridge when we have to.

As always, thanks for listening.

Below I've added a few random photos that are significant to me. When time allows, I have slide shows I want to create. Until then, I'm making words.



My esteemed mentors at Shakerag 2013 - Sandra Brownlee & Warren Seelig. They changed my life, my perspective.



My beautiful Shakerag workshop group *making* 27 Words. Grace personified.



JOY! JOY! JOY!

Sidebar: I intend to rework this project. I plan to separate my word from the collage - to also strengthen the Y. I'll be deconstructing the collage and using many of the *found* objects in my spanking new journal. This is such a win-win and reflects the joy that both Warren and Sandra brought into my life. Thank you, thank you!




A Work in Progress. Emily plans to give me a Mona Lisa Smile. *Waving and sending smiles to Catherine - good call!*