May 20, 2007

I am on my way to Baltimore, sitting on the plane with a mask on. Of course, the doctors were right and there is coughing toddler across the isle. I'd love to remove this mask, since it's so hot to wear, but I don't want to delay starting my treatment any longer by catching something.

The absolute worst part about leaving today was all the crying my kids did while hugging me over and over. Jessica kept saying "I don't want you to go." It was so sad.

All I can think of now is how much I want to get started, just so it can be done sooner. I'm really not scared, because the doctors I've met and spoken with are brilliant. The nurse coordinating this (Donna Dorr) is so wonderful, supportive and understanding. I heard that all the hospital nurses are fabulous, too. Anyone who wants to "google" the two doctors in charge will be quite impressed. Check out Robert Brodsky and Douglas Kerr at Johns Hopkins. They seem so young, yet have more research, medical articles and credits than most people could accumulate in a lifetime. I am so lucky that they agreed to treat me.

Yesterday I spoke to Kathy, a patient who did this protocol three years ago. She was even more reassuring. She was one year older than me at the time and in a similar condition and she said the treatment changed her life. She is still in remission after three years! Kathy said that she and the doctors documented dramatic improvements, starting just three months after the treatment was done. By nine months after , things were even better. Now she says that it's hard for people to tell that she ever had the disease from observing her. Since her treatment , nothing new has been active on her MRIs.

Dr. Brodsky and Dr. Kerr are so humble (and of course realistic) that they don't make promises about my potential results. Dr. Kerr said that when they initially tried this treatment, they were just aiming for longterm remissions, but they were surprized to find that patients also actually improved. With results like that and no other options ( with success stories anywhere close to their's), it was easy to choose this route.

Thanks to all of you who have actually called me "brave". If you knew Dr. Brodsky and Dr.Kerr, you would understand why I have complete faith in them and this protocol. I know that I am risking my life, but my medical team is the best in the world.

If I don't do this, I am guaranteed that my condition will continue to deteriorate. If I risk it all, who knows ("knock on wood"), maybe I'll finally be a success story. Two or three years from now, I'd love to be like Kathy, reassuring another prospective patient that she is making the right choice.