I received some news recently. My oldest sister told me what is really going on with our mom who has been ill for some time now. My mom’s bone marrow test showed that she has Myelodysplastic Syndrome Refractory Cytopenia with Multilineage Dysplasia. That’s a real mouthful, eh?

It used to be called pre-leukemia because some who develop the disease will then get leukemia (a cancer of the blood cells). It’s not called pre-leukemia anymore as they have developed some treatments for it even though it can make a person more prone to leukemia. Leukemia that occurs as a result of myelodysplasia is notoriously resistant to treatment.

From cancer.gov:  

Myelodysplastic syndromes are a group of diseases in which the bone marrow does not make enough healthy blood cells.
Myelodysplastic syndromes are diseases of the blood and bone marrow. Normally, the bone marrow makes blood stem cells (immature cells) that develop into mature blood cells over time. A blood stem cell may become a myeloid stem cell or a lymphoid stem cell. The lymphoid stem cell develops into a white blood cell. The myeloid stem cell develops into one of three types of mature blood cells:

In myelodysplastic syndromes, the blood stem cells do not mature into healthy red blood cells, white blood cells, or platelets. The immature blood cells, called blasts, do not function normally and either die in the bone marrow or soon after they enter the blood. This leaves less room for healthy white blood cells, red blood cells, and platelets to develop in the bone marrow. When there are fewer blood cells, infection, anemia, or easy bleeding may occur.

They are giving her Arenesp – which I guess is a form of chemotherapy – every two weeks, then the lab work will be repeated this coming week. She will get the results from the doctor treating her who will let her know if she is a good candidate to receiving the injection and, if so, how often she will have to have them. She said if everything goes as it should, the shots will be reduced to once a month. However, if she is not a good candidate for the injections, she will eventually be forced to get blood transfusions on a regular basis.

To say that I’m terrified would really be an understatement. I really can’t think straight. The only reason I know this is because my sister told me about it. My mother had decided to understate everything because, as she put it, I had too much to worry about already. Granted, this very much adds to my normal everyday worries but I’d certainly rather know than not!

I feel especially bad because I have been giving her grief about not wanting to come over and see the kids, especially when she would tell me that she would before calling off at the last moment. I thought it was all just a part of her depression schedule she has been keeping for years my whole life. This puts a totally new spin on things. I don’t think there’s any way of knowing just how long she has had this. Maybe that is why most of my childhood memories are filled with me wanting my mom to do something with me and her telling me “I’m too tired.” I also wonder if my grandfather, her father, didn’t have it as well.

It’s kind of ironic because, all this time, everyone has been worried about my father who has been living for years with congestive heart failure while my mom is really the one with the major issue that could kill her. 

This has just been so much to digest. I just don’t know what to think about anything. I don’t really know what all this means. I’m hoping that she will be a good candidate for the treatment and will be allowed to continue on it, but I fear at her age she may not be.