[Lisa V]

George, I don't have any medical advice for you but I just wanted to add my voice to the others. Your despair is familiar to all spouses/partners/caregivers whose loved ones have just received a diagnosis like that. I remember breaking down at the drop of a hat, and having to go into the other room to cry so my husband wouldn't have to see me looking at him with big sad eyes. There are stages of grief with an illness, just as there are with a death or any loss, but your partner is still here, so don't ever lose sight of that.

Hopefully with time you will find a coping mechanism. For me, as for so many others here, it was learning everything I could about the disease and getting as involved as I could with his treatment. I am forever grateful to the nurse who took me aside and told me to keep asking the hard questions and that I could be his biggest asset if I acted as his advocate. She could see that his style was passive avoidance and mine wasn't, so she pointed me in the right direction. I really believe this has helped both of us immeasurably. It not only gave me something to do with all of that chaotic emotional energy, but my research and online interaction with others has helped us both to gain clarity and to make informed decisions. Often at his appointments I had information at my fingertips that his doctor did not have. I'll never have the fuller understanding or experience of a medical professional, but I also don't have any other patients to distract me, just one very important one!

Of course it is human nature to find reasons to blame onesself or make bargains with God, but you obviously know that's not rational. More importantly, it's not really helpful, either to him or to you. Neither is jumping to conclusions based on your co-worker's experience. MDS is kind of a catch-all category for a bunch of related hematological disorders, and every case is different. Once you find out what category of MDS he has, you can focus on what his options are and what the prognosis may be. Statistics may help you come to terms with what you're up against, but they're not gospel. People confound them all the time, and medical science continues to improve and come up with new options. By the time statistics have been recorded, they're already obsolete.

Your life has changed for good, this is undeniable and sad, but the best thing you can do now is to figure out how you're going to live it from now on. This won't happen overnight. It's an ongoing process, but I think you're on the right track looking for answers and people to talk to.

I wish you both all the best.