Thursday, May 20, 2010

Information Overload

It has been an exciting 3 weeks since my diagnosis.  I've joined the IWMF-TALK mailing list; I've been to see the research team at Dana-Farber; I've had 2 consultations with my local hematologist and several phone calls with my family doctor; I've received a monster info packet from IWMF, and started to digest that data; I've learned about some of the treatment regimens, but can't keep them straight in my head.  I've told my family, some close friends, some co-workers, and my minister that I have incurable but likely non-fatal cancer.  And I need to decide this week what direction to take!  Most likely, it will be Velcade/dexamethasone/Rituxan, and I need to get straight in my head what's involved and also work out how to keep the Dana-Farber gang involved.  I wish I had another 2 or 3 weeks to digest what I've heard and continue the research.  I just found an educational DVD that you can order from the IWMF with presentations by most of the Bing (Dana-Farber) team, and I'd love to be able to watch that before deciding.  I'm going to order it anyway, and just keep plugging away at everything.  Even though I'm pretty certain what path I'll be heading down, there are certain to be plenty more decision points along the way.  The more I know about what's going on, the better my decisions will be (I hope) when I come to those forks in the road.  Right now, I'm not even sure whose woods these are...

2 comments:

  1. This is an interesting and possible useful site regarding drug effects... http://www.ehealthme.com/one-stop-drug-risk-analysis-and-management

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  2. More stuff to read: http://www.rarediseases.org/news/newsbriefs

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