Hi, my name is Melissa and I’m 46 years old. Two years ago, I was diagnosed with three different blood cancers (completely unexpected): aCML, Polycythemia Vera, Essential Thrombocythemia, and a few other things. I know it’s a lot, actually unbelievable at times. I’ve now gone through two years of chemo with no change. They have put me on a medicine called Besremi; it’s very expensive and, of course, it’s not working either. I’ve got one more medicine to try, then my last option is a stem cell/bone marrow replacement. Amongst all this, I was also diagnosed with CADASIL, a condition that causes severe migraines, strokes, and heart attacks, and eventually will end in either death from one of those or dementia.This has left me unable to drive long distances. I’m not sure which one I’m more scared of. I have three children in their early 20s that I’d love to be around for and to be able to see grandchildren one day.
I’m asking for a little help because I don’t have a lot of family and I haven’t gotten disability yet even though I’m trying. I’m married, but it’s a lot on him to have to take off work all the time to drive me to Mayo Clinic for appointments, which is four hours away. I appreciate anyone that helps, even if it’s just a prayer.
These diseases are causing horrible problems, and the meds are causing horrendous side effects that are sometimes unbearable.
I will update every time I get an update as I go to Mayo very often and will post pics of what I can. If anyone has any questions, I will be more than happy to answer.
Thank you, guys.
