Wednesday, May 5, 2010


Yup, drifting. Still searching for my purpose in this life. Not to say I am not finding joy in living because I am but I want to be fully engaged and I am having a hard time making it to that point. My mind is still my biggest obstacle. Some days are certainly better than others but man I want clarity. I want to live everyday, I want to make an impact and I feel like I am struggling. Swimming upstream.

So Shawn. Let's see there is so much going on with him, so much that I don't fully understand and so much that I have to learn about. I have questions and lots of them.
The treatment he has started, two weeks ago, he has had four sessions of photophoresis seems to be working! Shawn feels like it is, he said he feels more open, that he can breathe deeper and easier. Now this week he has not been scheduled for treatment and I'm not sure what is going on. So I've made some calls, left messages waiting to hear back. Don't drop the ball here, this is my husband's life you're dicking around with. I'll be aggressive as I have to be.

Then there is his pathology reports, which I have obtained a copy of. Some interesting and disturbing findings. Things that again I don't fully understand but I need answers. I'm not a surgeon, a pathologist, an expert of any kind but I am a wife and I need help. So I am hoping that my faith in our team is not misplaced. Oh Lord help them if it is.

Some positive things......This weekend we were blessed and honored to celebrate the life of Paul.
Paul was an amazing person, I just wish I had known him in his hey-day! Paying our respects to his wonderful family and his friends who traveled to Boston from all over the country was an experience I'll not soon forget. Having so many CF'ers in one place was surreal and an inspiration. So funny because Paul would have forbid it! I remember telling him one night that we were going to meet a CF'er, a mutual friend that I had met on-line in person and he wasn't too happy about it. I told him we'd be outside, by the ocean having ice-cream so surely that would be safe and he said "What matters is which way the wind is blowing" Ughhhh! I loved Paul. When Shawn was so very sick he was there for me, to talk me down, to reassure me and I'll forever be grateful for his words and kindness. In one of our last e-mails we were talking about rejection and he said "It's the dicking around that'll kill you" so off I go to kick some ass because the dicking around is not going to get my Baby! Thanks Paul