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Thursday, August 29, 2013

Thank You!!!

Today I just want to say THANK YOU SO MUCH to all of you wonderful people for all of your emails, notes, messages, and texts! It means so much to me to have you with me on this journey! From the bottom of my currently enlarged heart, thank you! :-)

I'll report in soon!


Tuesday, August 27, 2013

Holy Crap!!!

Such a scary time! Holy crap!!

I'm in the midst of being evaluated for a lung transplant. I've been in and out of the hospital doing tests for the past month, meeting with all sorts of doctors who are checking on the status of pretty much every organ in my body to see if I'm essentially "healthy" enough to go through such a complicated and risky surgery.

After meeting with the doctor today I am utterly confused and lost.

I was happy to report the news that I am feeling much better and stronger, that my lung pain, body aches, and cough are gone and that I am a bit less short of breath. Every time I know I'm about to visit a doctor, I build an invisible protective shield around myself and do all that I can to preserve my positive mindset, being that what they say can very quickly drain anyone of all hope. I realize that they're trying to help, and am grateful for that, but somehow I always leave their office with a strong urge to jump off the Empire State Building!!!

Today was no different. I went in there not confused and left there completely lost. My invisible protective shield didn't hold up very well.

The idea is that, although they cannot confirm the diagnosis, the doctors seem to all believe that I have a very rare and terminal lung condition called PVOD (Pulmonary Veno Occlusive Disease). In order to confirm it, I would need to do an open lung biopsy, a procedure which I'm currently not healthy enough to undergo. As a result of this, they feel that my best bet for prolonging my life is to undergo a lung transplant. The issue there, is that the life expectancy is not very promising, and there are millions of other problems that could arise as a result.

My argument was that since I feel so much better, why would I rush into a procedure that is so unsafe and potentially life threatening in itself. Their thought is that my condition will not improve, and will eventually lead to heart failure. If in fact it is PVOD,  "eventually" would come sooner than later. They believe that since I am stronger and feeling better, that this would be a perfect time to undergo such a tough surgery. My chances for survival would be greater.

I'm sitting here not knowing what emotion to have. This whole experience feels so incredibly surreal. I kind of feel like I should just rip off my oxygen, go have glass of wine (really a bottle) then move to Hawaii and pretend that this was all just a terrible dream.

I am going to have to make a decision very soon as to how I'd like to proceed.

Although the doctors wouldn't be with me on this theory, a large part of me believes that somehow my body is healing itself.  As a result, it feels counter intuitive to go through with surgery at this point. The other part of me is scarred shitless that if I don't go through the surgery I may not be around for very long. Right now, the emotion that is in the lead, is the one that feels like I'm healing and therefor should hold off on being listed for a transplant.

What a crazy time! I'm going to think and think and think and feel and feel and feel and let my body help me decide what to do. In the mean time I shall sip on my green juices and pray!!!

Thank you so much for reading this and for being with me on this journey!


Friday, August 16, 2013

A Poem

I love this poem! :-)

"When you get what you want in your struggle for self
And the world makes you king for a day,
Just go to a mirror and look at yourself
And see what that man has to say.
For it isn't your father or mother or wife
Whose judgement upon you must pass;
The fellow whose verdict counts most in your life
Is the one staring back from the glass.
Some people may think you a straight-shootin' chum
And call you a wonderful guy,
But the man in the glass says you're only a bum
If you can't look him straight in the eye.
He's the fellow to please, never mind all the rest,
For he's with you clear up to the end,
And you've passed your most dangerous, difficult test
If the man in the glass is your friend.
You may fool the whole world down the pathway of life
And get pats on the back as you pass,
But your final reward will be heartaches and tears
If you've cheated the man in the glass."

Monday, August 5, 2013

A Cinderella Moment

We had a great evening at the premiere of "Lovelace!" (Hunter is one of the producers of the film.)
I hadn't been to an 'event' since all of the craziness took place, so it was a moment!!!

I decided that since I was going to get all done up, Steve Martin should also look the part. He decided to wear a tie, which I thought was a perfect choice! (see picture below)

Hunter, Steve M. and I proudly walked down the red carpet. There were paparazzi everywhere since all the actors were there (Amanda Seyfried, Peter Sarsgaard, Hank Azaria, Chris Noth, Sharon Stone…) and I thought to myself: "Self, this is crazy that you're here and that you're carrying around an oxygen tank that's wearing a tie nonetheless! How did this happen???!!"

The amazing thing is that people were so incredibly nice and accommodating as a result. I didn't have to stand in any lines, I was escorted to my own elevator, so that I didn't have to use the stairs or maneuver through crowds…At the after party, I was offered a seat in the "reserved section" by Chris Noth (Mr Big). It was like I was carrying around a VIP pass the whole evening! Thank you, Steve Martin!!!

We ran into friends at the after party and had a great time!  I kept glancing down at my tank to make sure I had enough air to get me through! It was a Cinderella moment :-) My tank magically lasted the whole evening! 

Thanks for reading this! I hope you have a great day!