Feeling better...

Hi friends, just wanted to let you know I am feeling better. It takes time to recover from bilirubin issues, but I am getting there. I am on task to go to Jeff City later this week to get scans for this trial. I am stoked! I really want this medicine, can you tell? Anyway, I have been relentless about my medical care since the beginning so I guess there is no reason to stop now.

There is a possibility that the study will be available closer to us so I will look into that, but for now, I am just glad that I made the first hurdle of acceptance with the clinical trial coordinator and now they have booked scans for me. All scans have to be redone for the trial, it is like anything else at other facilities don't count. So, I will have a CT scan of my chest/abdomen and pelvis, an MRI of my brain (ick!) and a MUGA scan, which is a scan of the efficacy of my left ventricular function of my heart.

I despise scans, but I am becoming friends with them. After all, they have saved my life many times over and I chose to go to a facility that uses them for staging cancer so it is my own fault. I am proud of myself in that I asked for sedation on the brain MRI because it is pretty scary. This is the one where your whole body is put in a tube and scanned for about 30 minutes. The scan is very noisy, it sounds like heavy artillery is being used on the outside of the MRI machine so it is very hard to relax. I am not normally claustrophobic, but even the bravest of souls would be claustrophobic in this setting...so I am opting for a little sedation to help me relax and I would recommend it for anyone who ever gets a full MRI.

Alright, I will write more later. Right now the kids are settling down to watch a movie and I am going to try to relax. Please be sure to check out my new picture from WHY PINK? I have a couple of others to upload to the web site. They did a great job on my photos. Very exciting!

Blessings,
Lolo