[cathybee1]

Here's what happened to us.

After the doctor told Bruce last year that he had a suspected case of myelodysplasia, Bruce went "into his cave." He didn't want to talk about it. He didn't want to know about it.

It was one of the most stressful times for me during our 25 years together, because it was one of the only times that he wouldn't let me talk to him about what I was learning about the disease. This group was my respite then...I read every post here. It was a very long 3 months. Your father has been living with this much longer than I did. So I can appreciate what your father, and now what you are going through.

This time may be your mom's time in the cave. Especially if she has been treated since last winter with Revlimid. Perhaps she is responding well enough to it that she doesn't want to worry her family. But that doesn't mean you can't support your dad in the meantime. Your understanding of the disease and helping him understand might help both of you when your mom decides the time is right to share this information with you.

I also wanted to share that my husband has had elevated bilirubin for years, and is a carrier for one of the 2 hemachromatosis genes. There have been opinions by numerous doctors the past year about what is the chicken and what is the egg or whether the suspected hemachromatosis is even implicated in his anemia and neutropenia. Bruce is electing to undergo periodic transfusions for now.