About 2 months ago I found out that my MDS (myelodysplastic syndromes) has relapsed.  This, in my case means, we need to get rid of this beast quickly so it doesn't revert to leukemia again.  MDS is considered a "c" word also and is considered a rare disease.  So I not only get a rare disease once...I get it twice!!  Does that make it a rarer disease?  This type of relapse only happens one percent of the time and because I'm a long term initial survivor, there is no data.  Maybe now I'm entering the rarest disease category. Sure, I couldn't win the friggin lottery with those odds, but diseases are no problem.

On November 27th I began low dose chemo.  I received the chemo for 5 days straight.  It wasn't bad, it just made me tired and constipated from the anti-nausea meds. We are trying to avoid another stem cell transplant so this is the route my doctors have come up with.  My Danbury doctor and my Boston doctors are working together and I go to both hospitals.  I had the chemo as an outpatient so everyday I was back and forth to Danbury Hospital with a new IV every time.  I look very bruised and my veins are starting to hurt.

On December 7th we headed up to Boston for the second time that week.  I received something called a Donor Lymphocyte Infusion or DLI as I will now refer to it. The Lymphocytes came from My sister, Mel, who was my original bone marrow/stem cell donor.  We are hoping that these new cells will crowd out the bad cells and kick some ass.  I will probably have to do the 2 more rounds of chemo and 2 more DLIs.  They don't like to infuse too much at once because it could cause very serious graft vs host disease or gvhd.  That's when the cells are fighting each other.  The doctors want me to get a little gvhd, because that means the bad shit is also being fought off.  If I do get bad gvhd, I'll be put on immunosuppresants.  I don't go back to Boston until the 19th so hopefully things are quiet until then.  I will fill in the blanks as time permits and I'll share my stories of tom-foolery.

I need to bake some cookies now, so if anyone has any questions , please feel free to ask and I'll try to keep everyone informed through this blog.