LOOPY LUPUS LIMBO!!!

Hi Friends!

Well, apparently God still is working on teaching me patience! This morning we went to see Dr. Cohen (my main doctor -- the rheumatologist/internist). Bill came along as did Nate and Isaac. It was a nice chance for Nate and Isaac to meet my doctor and ask him any questions they had about my illness. Isaac asked "How did my Mom get it?" and "When will it go away?" Nate, on the other hand, just wanted reassurance that I am not going to die. I think it's hard for them to understand that I'm getting better when the chemo makes me appear worse at times.

We also talked about recent test results and my treatment plan. My bone density test came back showing that I'm osteopenic (precursor to osteoporosis -- meaning I've had some loss of bone density). It was to be expected due to my exposure to steroids, family history, and build. So, I will continue to be treated for it with Boniva, and if it gets worse -- I will switch to a stronger -- once a year infusion. Hopefully, I won't have any falls and break my fragile bones!
As Bill like to say, I am a "delicate flower." I guess that's nicer than saying I'm high-maintenance, whichi is probably closer to the truth!

As far as the chemo treatment goes -- I am scheduled four Chemo # 6 (of Cytoxan) on Monday. After that Dr. Cohen wants me to go back to UCLA. I need to meet with the Director of Rheumatology again to discuss my options. I met with him about 8 months ago to develop this treatment plan. Because CNS (Central Nervous System) lupus is so rare, we have a whole team of doctors working on this with me. I am the only case my rheumatologist/neurologist have ever seen. Regular lupus (SLE) is much more common and the type that most people have -- it affects the skin but not organs, brain, etc. That, by the way, is why I get irritated when people say -- " I know someone who has lupus and they've never had as many problems as you.." Well, it's most likey SLE not CNS lupus. But back to the treatment plan -- As Bill said -- my doctor is just trying to make sure I get the best medical care possible. He said there may even be new and better treatments available at UCLA right now. So, I'll make the appointment, try to be patient, and let you know when I know.

Please pray for my friend, Terry (my neighbor who cooked Thanksgiving andf Christmas dinner for me). She had a cancerous tumor surgically removed from her bladder. I am praying that she has a great outcome and won't have to do chemo, radiation, etc. She is a sweet and funny lady, and she tried to hide what she was going through -- but we "Fletcher Street girls" (Judi, Annie, and I) are busybodies, so we won't let her get away with anything like that again.

Have a great night!

Much Love,
Michele