Boston and blood counts

We went to Boston on the 19th and received some decent news.  My platelets were up!!  I guess this is where I should give a rudimentary description of blood cells.  Blood is composed of three parts, red blood cells, white blood cells and platelets.  Red blood cells carry oxygen, so if they are low, a person may be out of breath and anemic. White blood cells fight infection.  Platelets clot the blood. Low platelet count is called thrombocytopenia. Chemo screws them all up. I could go on and on, because there is way more, but I'm not a hematologist (blood doctor) and I don't want to give incorrect information.  Anyway,  my blood counts are looking better.  It's most likely because of the chemo.  I believe I'm starting to get better even though Dr Mac (Boston)  says it's way too early to know.
My chimerism test isn't back yet and we don't expect much to change.  I would love 50% me and 50% Mel, but I'd be happy with any increase.

I started chemo again in Danbury yesterday.  I asked Dr Mac if I could switch to a chemo shot instead of the IV.  My veins are getting very painful and it's hard to get a new IV sight ever day.  He thought it was a good idea.  Come to find out, it's 2 shots in fat.  I had the back of both arms yesterday and either side my stomach today.  Tomorrow will be in my back near my hiney and Friday my chubby baby thighs.  Yippee for having lots of fat spots!!  The chemo I'm getting is called vidaza.  It is low dose.  It surrounds the bad MDS cells to keep them under control and it will help to raise my blood counts.  All my blood counts are on the lower side, but not in danger zones and this chemo is giving them a boost.
I'll let you all know when my chimerism test comes back.  Should be this week or next.
This is what both of my arms look like from the shot....ouch!  It should be gone in a couple days.

chimerism

Tomorrow we head back up to Boston for a checkup with Dr. Mac, blood count check and a chimerism test.  Chimerism is the presence in an individual of cells of different origin.  So in non-medical jargon,  the test will tell the doctors how much of me is me and how much is still my sister.  Last check, I was 80% me and 20% Mel.  The good news was that the 20% was the immune system, which is why I'm able to try these DLI's.  Any person composed of two genetically distinct types of cells is called a chimera.  Hey, I've been called worse!!  As a side note, In Greek Mythology, the Chimera was an awesome fire-breathing monster with the head of a lion, the body of a goat, and the tail of a serpent.
Just call me Chi-Chi. 

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.