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!

xx
Chloe

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!

xx
Chloe

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."

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!

xx
Chloe

Ta da da dum...

Hi Wonderful People,

Today we had to do what I've been trying to avoid doing… Ta da da dum...

We had to schedule 3 days of testing and 3 days of visiting with doctors, therapists and social workers at Presbyterian Hospital. All of these tests are to determine whether or not I quality for a "Bob." Crazy that I have to go through psychological testing!  Even though I'm better (AMEN) my cardiologist still wants me to go through the process and be listed for a Bob.

I'm going to do my best to shift this yukky experience form being a scary one to being, in Hunter's words: "A series of metrics that can only serve us. " But damn those evil voices are loud as a mother%^&$^* today! Anything related to Bob is bothersome to me. Damn Bob!

I do have the decision to not go through with any of it, but of course that's scary too! Ahhh! Scary on the left and scary on the right. I think it makes sense to go through with all the testing (which is not nearly as bothersome to me as interacting with the doctors) and continue on my journey of healing without ever needing a Bob.

My cocktail of meds,  green juices, a healthy diet and exercise seems to be doing the trick!

I realize that  a situation is not really about the situation but about how we choose to see the situation. Someone said this a lot better than I just said this.

So, I'm going to power through and see the situation as one to be grateful for. These tests can be an opportunity for me to have a better understanding of my current health situation and as Hunter says, to have a set of metrics that we can refer to. I'm going to listen to the doctors and rather than cringe, I'm going to pretend that I'm on stage and visualize them all naked he he he he just kidding. But seriously, I'm going to let their words also be metrics and do my best not to take them to heart (literally.)

In music news, I just wrote and released a new song titled "The Meaning of Time." If you'd like to watch/listen, please click here: https://www.youtube.com/watch?v=r0yKe1brjrQ

Also, there is now a subscribe area, on the right, in case you'd like to be notified when I post a new blog.

Thank you for being  part of my world!

Wishing you a great day! :-)

xx
Chloe

New Song!!!

Recorded a new song today! Yay!!

I was wondering how I was going to be able to record with the oxygen because it's so loud!!! Every time I breathe in, it sounds like a huge gust of wind, and amplified by a mic, it sounds like a tornado is taking over the earth!!!

So my first attempt consisted of taking off the oxygen and pretending that, while doing vocals, I just wouldn't need it. I decided not to check my 02 saturation and just make believe it was OK. I finished a few vocals and thought: "What the hell, let me just check it." It was definitely low so I put it back on :-( Steve Martin is clearly not ready to let me go just yet.

How was I going to do this! Ahhh!! Steve Martin is sooo loud!

I was a bit discouraged for about 6 minutes, when I thought: "Hmmm… what if I leave on the cannula and breathe mostly through my mouth, occasionally taking breaths through my nose. It worked!!!

I took one breath through my nose for every three I took through my mouth and I was able to get a vocal that was clean. It didn't sound like the end of the world was coming! It took longer to record, but it worked! This is the kind of thing I never thought I would be so excited about!

I look forward to sharing the new song with you soon!

Happy Day!!! :-)

 xx
Chloe

Road Trip!

We just came back from Rhode Island (see driver below) where we were for 4 days visiting Hunter's family and celebrating life!  We decided to take a little celebratory road trip since my most recent echo shows that I'm continuing to improve. AMEN!!!

I'm not a huge shopper but I do like the mall in Providence, RI. So, on Friday, we took a little mall trip. This was my first real shopping moment with Steve Martin. It was really my first "outing" since being in the CCU.  Shopping with Steve M. was quite something.
He definitely doesn't leave my side :-)

The craziness is that I have to get everything done b4 he runs out of 02. I've got a good few hours before he needs to be changed. It all worked itself out!

We're gradually increasing my meds, and are religious about our green juices! I'm feeling better and stronger, which I'm so happy about. Music is starting to creep up and say: "Hey, what about me? Did you forget about me?" This of course is a very hopeful sign :-)

I hope you are having a wonderful day! See you at the next :-)

xx
Chloe