Welcome

My name is Tony. I'm a 32-year old guy living in the Boston area.

Last month, in May 2005, I was diagnosed with primary amyloidosis (AL), a rare bone marrow disease. This is a very scary time for me, as not much is known about this disorder, and there is no cure.

Before I begin, I want to explain why I am writing this blog:

• First and foremost, to get all of my family and friends abreast with my progress. My response to the treatment will have a lot of ups and downs, and I want to make sure that everyone is informed.


• As an amyloidosis patient, I feel like I have the responsibility to chronicle my experience for other amyloidosis patients so that they they do not feel alone. The stress and mental anguish that one goes through can be nearly as bad as the treatment, and sometimes it is very hard to cope. I've found that I am comforted when I talk with other people in my condition, and hope that I can provide the same comfort to others.


• To provide everyone with an understanding of this disorder.


• As a social gateway to the outside world. My treatment will leave me without an inadequate immune system for many months, and I will not be able to visit friends and places for quite a while.

My writing style will vary throughout my treatment, as the procedures (and drugs) may alter how I feel on a daily basis. One day I may be optimistic and witty, and the next day I might sound like the lyrics to a Cure single. I ask your forgiveness upfront for this manic-depressiveness. :)

During some periods of the treatment, I may be too sick to get out of bed, much less type on a computer. I have asked my 'step-parents' Walter and Janice Rue to provide updates during these times. Also, you may see posts by my mother Pat, who will be my caregiver during this procedure. I'm still working on teaching them how to blog, so please be patient as I get them up to speed!

Thank you for reading. Wish me luck.