Thursday, December 23, 2010

Tidings of Utmost Joy!

First of all, I want to tell my friend Cheryl of my utmost joy in hearing that she is in complete remission from amyloidosis following Stem cell transplant this summer! I am absolutely thrilled for you, Cheryl, and for you your family. This Christmas gift is incomparable, and I know many people prayed, pushed and helped you to get there, but of course none more so than yourself. My happiness is complete for you. Enjoy every blessed second of your perfect Christmas gift.

My own stem cell transplant plans continue to develop. I just had 4 weeks of aggressive Decadron treatments (4 days on, 4 days off) and it managed to work some minor miracles of its own. My kidney function has improved about 50%, and my lambda/kappa ratios are very good. I am as about as good as I’ve been since this whole thing started, so I guess that is exactly where I should be a few week before going into transplant. Decadron is a powerful, difficult drug to take, so I am not without side effects. But with a few days before Christmas to go, there is nothing much left to do that would cause a problem if I decided to stay in bed all day. Family and good friends will take care of us this year, and I’m certainly not sweating the details. Things like this always put your life into proper perspective.

So Merry Christmas and Happy New Year to all of my family and friends. Keep checking this blog as I will have much more to write about in the coming weeks. Peace on Earth and healthcare for all! Love, Fay

Thursday, December 2, 2010

Silver Linings



Ahh, Decadron, I have so not missed you. Since I’m writing this at 1:37 am, does that explain in a nutshell why I feel this way? Dr. Porter put me on a rather high dose of Decadron (dexamethasone), which is a steroid, to keep the Amy Army suppressed while I wait until January, when I can have my stem cell transplant at HUP with my new insurance company! As a result, my energy level is very high (lots of cleaning going on) but I can’t sleep due to restless legs. So I started taking potassium supplements to help out with this problem. If that fails to do the trick, I guess it is back to Lyrica, although I really don’t want to go through that again. Going off Lyrica caused two weeks of killer headaches for me!

I am trying to take this unfortunate delay in good stride. The hospital is no place to be during Christmas. I’m happy to be able to have a relatively normal Christmas with my family now due to this insurance snafu. My house is partially decorated already (steroids help, zoom-zoom-zoom!), so that is nice. But we will skip the big Christmas Eve party with 7 fishes this year. I don’t think that is even possible for me to undertake. It was difficult for me even last year, I remember. At the time, I just didn’t understand why it was so hard. My energy level was not normal. I had to take many rest breaks. I figured I was just getting old! Little did I know what was brewing in my bones. How odd to think back on one year ago and think of how much has happened since then. Many changes in my perspective due to very unwelcome, life-altering news.

However, I still maintain that every black cloud has a silver lining. I have found my husband to be a tremendous, unending source of support and love, although that doesn’t surprise me in the least. I have come to realize that a lot of people, more than I ever would have expected, truly care about me and my family, and that is an awe-inspiring thing to discover. I have made strong connections with new people that have come into my life that either have, or treat, my unfortunate disease, and I treasure their input and guidance. They feel like family to me. I have come through adversity with equanimity and a positive outlook. I thank God for this strength. I could never survive this ordeal without that strength, which is as much in my blood as those dreadful plasma cells. I guess my parents knew what they were doing when they named me Faith.

So I remain positive that things will work out. I am especially happy to be spending Christmas with my family, and not in the hospital! I am thankful that I will soon get my transplant. I am so very grateful to have good health insurance. Things will get better soon, and while I’m waiting, there are books to be read, drawers to be cleaned, decorations to be placed, and cookies to be baked!

God Bless you all, and I’ll be back soon. Probably in the middle of the night again.  ; )