Anthology

From: Barb
Email: BarbPurvis@aol.com
Date: 5/20/2001
Time: 9:24:54 PM
Remote Name: 24.169.74.83

Comments

Bruce,

Thanks for the update. Your forum is GREAT!!! I was trying to research the information concerning the “Popcorn and Platelet” connection. I believe the article that confirmed my experience was in the newsletter published by the Aplastic Anemia Foundation before it expanded and added MDS. I may e-mail them and contact Fred Hutchinson Cancer Research Center to see if patients there have had similar experiences. I’ve just had time to go back through and read the discussion to date. There’s good information and a real sense of “connection,” rather than feeling so alone as I have for so long. As I read Leyla’s comments I could only nod my head in sympathy. I’ve had 2 Hickman catheters, 1 PortaCath (I almost died from the infection when it clotted out), blown out veins, numerous central lines, IVs in my neck and feet, so many bone marrow biopsies you can play connect the dots on both hips, complications, setbacks and disappointments, yet... I value the experience (not that I’d volunteer to do it all again, but since I’ve already been there...) I value the experience for what it’s added to my life in other ways. I’ve got a proposition for all those who are willing to share their stories. As a writer, I’d like to edit an Anthology and secure publication. Of course, first publication could be on your website Bruce with traditional or CD copies to augment. It would be interesting reading for those who come after us. Would anyone be interested? I’ve also wondered what would happen if someone developed a questionnaire for patients so that scientists could do a study based on them. Does anyone know of a study like this. I’ve often said that if all that data could be analyzed, causes might beging to emerge, as well as clearer reasons for the responses to various therapies. Back in the early ‘80s ATG was the best new hope other than supportive therapies like transfusions. It is encouraging to see other avenues being explored. Barb