[Joy]

I tried Vidaza twice. Receiving the drug through my port was fine but through my stomach was horrible! But both times I ended up in the hospital, the first time with pneumonia because my doctor wouldn’t give me antibiotics and the second time Was because of colitis which was three months ago and I’m still dealing with it plus I picked up cellulitis along way from an IV! A few nurses and a PA have told me I am in the end stages. My doctor does not agree. I am transfusion dependent once or twice a week which to me is a more natural approach. The chemo almost took my life and I’m slowly building myself back up from that experience. I don’t regret trying it because at this point I figured at least I tried and that made my daughter feel better as well but I can’t tolerate Vidaza or Revlimid so I’m afraid to try anything else. Plus there’s the fact that none of this will completely get rid of the MDS. I don’t qualify for a transplant so for now I take a lot of anabiotic’s antifungal‘s antivirals and transfusions and I’m doing the best I’ve done since last fall. It’s not an ideal way to live but I have this disease that I have to deal with and this is the way I’ve chosen to deal with it. I don’t want to be sick and I don’t want to die. I’m 68 years old I know I’ve had this disease for a very long time. I am a grandmother now to two of the most beautiful little souls in the world and I don’t wanna leave them or my daughter, Who is their mommy. I pray that God would let me live and even though I look better than I’ve looked at a really long time of course I lost 30 pounds from this which is one thing I’m grateful for and I’m still living pretty much my normal life except if the infections get too severe then I’m down. The anemia is what is worse for me but recently my numbers are coming up and I do feel a lot stronger. I just read about some late stage symptoms and I do have a few but I look and feel the best I have in a very long time so who knows what can happen or when. I tried to live my life with the normal attitude and it works some of the time but not all the time but that’s OK. I’m taking it a day at a time and pray for a remission at least But however it turns out it’s God’s will for me and He will be there to help me get through it.

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