Hi Lisa and Laura and Linda,
What a coincidence with all the lovely "L" names-- Thanks for the replies. We were talking today in Mindfulness class about the same subject of unsupported hope, or gloom and doom. I think you have to be realistic without being cynical or you might not recognize progress when it comes. If you are doing well, you will have a hard time at some point, and if you are having a hard time, things will improve. You can't set your feet in concrete and expect things to stay the same. That's helped me though more than one up or down in the last two years. I've decide that some of my crisis is of my own making and interpretation. If I define "doing something" as necessary for healing, I will continue to seek treatment, even if ill advised. If I redefine treatment as monitoring blood counts and being patient, it's easier to tolerate. I'm glad my doctor had a strong enough ego to suggest backing off to see what happens. His frankness hurt my feelings but didn't change the message and I appreciate it.
Re alternative treatments, I think I'm already on board with this. My Wellness center offers many modes of complementary treatment including yoga, diet counseling, meditation, art, writing, couple's and individual therapy. I've participated in many of them almost since my diagnosis and found them to be very, very helpful.
Laura, my blood numbers have been about the same since my diagnosis 2 years ago. I think my AA has been smoldering along for years as I look back. The consultation with Johns Hopkins 1 year ago resulted in a recommendation to do nothing at that time. I returned home and, partly from frustration, agreed to undergo ATG. It seemed like a proactive step, but wasn't. In retrospect Johns Hopkins was correct, but it seemed like "something" needed to be done. I don't feel that way any more and patience is perhaps a bit more advised. When I was on PRBCs for a couple of months following ATG it had little effect on my fatigue, and I understand that's not uncommon with auto immune diseases. If you feed it red cells , it just get hungrier
Linda, I can't believe the coincidence of your husband being treated at Emory too. Sure hope they treated him well. The cancer center is a bit like a Grayhound Bus station at times but there are a lot of sharp folks there. BTW, you and your husband would qualify for free Wellness services at Piedmont Hospital if you are interested. Piedmont Fayette also has a smaller Wellness program. I can send you a link to their calendar and you would be amazed at the scope of free programs they provide for anyone touched by cancer (or AA, etc) Let me know.
Thanks again for your thoughts. It's helping me solidify my ideas and blunt my impatience.
Flyguy, AKA Ron