Share Your MDS Story

I am in the top 1% according to my breast cancer oncologist.  Apparently 1% of patients do develop MDS from the Chemotherapy my Oncologist prescribed. Although He said he had never had a cancer patient he treated develop it until me.  Looking back through the numerous pages of side effects of Chemo it does list "other cancers" as a possible side effect.

I have always had a game I played with my kids.  Whenever there was something unpleasant I would encourage them to look for the good among the yucky stuff.  It has carried me through the last few years enduring the awful side effects of treatment. For there is always something fun or positive if you look for it.

The breast cancer Chemo so badly damaged my bone marrow that it was no longer effectively producing blood cells. My red blood cells were low and misshapen. My white blood cells slowly dropped off and never came back up after treatment.  My Neutrophils hardly registered at all in blood tests.  I kept getting infections. Radiation set me up for a gnarly infection in the radiated tissue.  I asked the radiation techs what kind of superpowers come with this type of radiation.  Apparently just the ability to set off the scanners at the airport for about 3 years.

The final diagnosis a year after breast cancer treatment ended was MDS with excess blasts.  The only "fix" would be a bone marrow stem cell transplant.  Otherwise, my sucky immune system would allow an infection to take me out.  

I wasn't done fighting, so my family took on the Bone Marrow Stem Cell Transplant process with me.  It was a horrendous procedure with some awful lingering side effects of its own.  But I can now say I am a 26 year old in a 59 year old body!  I’m waiting for the blond hair and big boobs from my donor to fill in.

Now I run anemic, but I have white blood cells. I guess I am back to being white again. My energy is low.  Extreme fatigue is my constant companion.  I cannot go up a flight of stairs without stopping for several minutes to catch my breath. My Hubby jokes about putting an elevator in our house.  I think our Chihuahua would use it more than I would. While I am not dead, my life is a tiny fraction of what it was before Cancer treatment.  My family doesn't mind though, when we have to park in handicap parking so I can walk in places.