My platelets have ranged from 50 to 80 for the last 2.5 years. We check blood every 3 months. When they got to 50, I had extreme fatigue & headaches, but now back at 70, my energy is good and I can do what I want. Two bone marrow tests revealed problems with specific chromosomes pointing to MDS or maybe CMML. As my hematologist put it: “something is brewing in my blood, but it going slow and we will continue to keep an eye on things.”

I do get spells of being really tired, but so far energy has always returned. I’ve done acupuncture to help calm me and have been drinking a sort of super-food shake most days which seems to keep me fit and regular. I got the recipe from a nutritionist. I drink dandelion tea and eat papaya as both were recommended to raise platelet numbers. The papaya messes with my stomach, so don’t take it as much.

I still bruise a lot and bleed if I get any kind of cut. Healing is a slow process, but eventually cuts close up. I’ve lost more than 40 lbs over these last two years which brings me down to an acceptable BMI. I didn’t diet, just did my shake and am generally just not hungry. I haven’t been on any medication. Living every day and focusing on others has been helpful in keeping a good attitude. But the watch and wait is still unnerving.