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Thursday, September 26, 2013

The Eiffel Tower

I had such a great time in Maine hanging out with friends and family!

One of the days we were there, Steve Martin decided to go out on his own (see pictures below.) I think he just needed a moment.

From Maine, we ventured to Brigham and Women's Hospital, in Boston, for a visit with the Great Dr. Landzberg and his team. We had a fantastic visit which left me both comforted and much more informed.

Dr. Landzberg made us aware of a few findings on my CT scans that are "not classic of PVOD." This, of course, doesn't confirm that I don't have PVOD, but at least it's a step in the right direction. The only way to confirm it is with an open lung biopsy, which I'm not well enough to undergo at this time. My cousin decided that PVOD stands for "Piss off you Very Odd Disease." I think she's right on with that one! :-)

Yesterday morning I had to have a tube with some sort of camera inserted into my stomach through my nose (what a lovely image it was.) It went in my nose, down my throat and into my stomach and I had to leave it in for 24 hours! Ahhh! The tube came out this morning! What joy! I've never appreciated not having a tube down my throat as much as I do now.

Its purpose is to monitor reflux and any sort of action that goes on in the digestive system. (This test is part of the transplant evaluation.) I thought I was done but there was one more. What a welcome back to NY!!! I'm ready to go back to Maine. The good news is that, as long as I continue to feel well enough,  I can take a break from doctors and focus on music. Amen!!! Looking forward to sharing both my album and all the new music I've written with all of you.

More to come :-)


Steve Martin thought he spotted the Eiffel Tower.

 Then he stopped for some Seafood
 Then he took a moment to enjoy the view
 Then he got hungry and stopped for brunch
 Then he decided to watch the sun as it set
Then he decided to make an evening of it and went to listen to some Jazz
Other Happy Moments:

Saturday, September 7, 2013

Back On Stage!!!

I have officially completed all of the testing for the transplant evaluation. The next step is for the doctors to review my case and test results to see whether or not I qualify for the surgery. At that point I will have to make a decision. Ahhh!!!

In the meantime, Hunter and I are heading to Boston to visit a doctor for a second opinion and then heading to Maine for a mini vacation so that we can take a breather from all of the craziness.

We're also communicating with doctors in Japan, Hong Kong, Singapore and at Vanderbilt University who have specifically dealt with PVOD. Our goal is to find out as much as possible about this very rare lung disease in the hopes that something will lead us to believe that I don't have it. And if I do have it, then our hope it to gather as much information as possible.

In the midst of all the insanity, I've decided that it's time to perform again!!! Thank you, Annette Insdorf for the inspiration!

This time, I shall be performing with my sidekick, Steve Martin. He so enjoyed getting all dressed up for the opening of Lovelace, (he wore his favorite tie) so he has asked that I dress him up again for the show. I will, of course, honor his request. :-)

I'm going to be playing on November 7th, at the Gala for Pulmonary Hypertension, celebrating the life of Dr. Robyn Barst. I'm so looking forward to being back on stage and to sharing all the new music I've been writing. This experience, scary as it may be, has been a HUGE musical inspiration!

I'll send out a newsletter with details about the show soon. If you're not signed up for my newsletter and would like to be, please leave your email here:

Thank you again for being with me on my journey! More to come...