DAY TWO OF MEDICAL APPOINTMENTS...

Hi Friends,

After a night of no sleep thanks to steroids and my over-active brain, I got up too early this morning. Bill and I left for UCLA at 7:30 a.m. Traffic was the usual California gridlock on the freeway, and we were lucky to make it to my appointment with Dr. Karpouzas on time at 9:15. Dr. Karpouzas was surprised at all the medical drama I had incurred since my last visit with him 3 months ago. He examined me and will confer with Dr. Cohen by phone on my treatment plan. Meantime, he is decreasing my steroids and increasing my CellCept. He does not recommend more Rituxan for me at the current time -- but he needs more information from Dr. Cohen regarding the specific types of pneumonia and kidney infections I've had in the last 2 months. His concern is that it's not the right type of chemo for my brain. Also, he worries that the chemo is causing my immune-deificient body to develop infections that I'm unable to fight. And with all the resistance to antibiotics I've developed -- there are only a few IV antibiotics left I'm able to use successfully. So, after the morning at UCLA -- Bill and I ran one very important errand ... more details to follow... perhaps on Friday! Then we had a beautiful drive home through Malibu on the PCH -- the ocean was stunning today! We stopped at Del Taco on the way home for lunch.

By the time we made it home, it was about 1 p.m. Annie and the kids were finishing homeschooling, so I jumped in and lent a hand. They did journals today (I'm encouraging them to write down their feelings), and the topic today was how Annie could help them when she babysits. Isaac gave her the best compliment and wrote in his journal -- "Annie can help me by being my Mom when my real Mom is sick!" I thought it was very sweet, and I'm glad to have friends that we can love and rely on.

I lay down from 2-3 p.m. to take a nap before it was time to see Dr. Cohen. Annie and Molly went to pick up Cameron, and they stopped to get donuts from SpudNuts for an afterschool snack. Thanks, again, Annie! Nate and Isaac went over to play with Mattthew, but I heard they showed up later for donuts. I ate a huge donut, and it was very chocolate and very good. I also drank a chocolate milk, deciding that today was not the day to care about healthy eating choices. When I went to UCLA today, I discovered I had gained 15 lbs in 2 weeks from the steroids. Again, I am very very puffy!

We left at 4:15 for my 5 p.m. appointment with Dr. Cohen. He will call Dr. Karpouzas, but he has a completely different opinion on the Rituxan. He wants me to start back on it ASAP, and he doesn't think CellCept alone will help kick lupus' butt. So, to break the tie -- he's sending me to see 2 more UCLA specialists. They are both working on a Rituxan study for lupus patients. In case you haven't realized yet -- these drugs and treatments for lupus are all experimental. They can't ethically do controlled studies on people whose lives are in danger due to CNS lupus.

So, meanwhile, I can lower the steroids and up the CellCept,but not as high as Karpouzas was suggesting. Dr. Cohen will phone in some personal favors to get me in to see these new doctors, and we'll go from there. My pain is better under control with the higher-dosages of Dilaudid and Fentanyl. So, I have a 2 week reprieve until the final decision is to be made. I'm not sure if that's good or bad. We'll try to spend the next two weeks as "normally" as possible and go from there.

Annie and I got home at about 7 p.m. and Bill was home making dinner. Molly was thrilled because her Barbie vacation house arrived by UPS today. She saved up a bunch of her Christmas money to buy it. In a cute twist of niceness, Isaac and Nate helped her put the whole thing together. It, of course, required assembly and a lot of stickers, so she was lucky to have 2 helpful brothers.

Other than that, tonight passed quickly. I am tired and I hope for a restful, pain-free night of sleep. Cam has no school on Friday or Monday. So, after tomorrow, he'll have a 4 day weekend. That will be nice for all of us. I will still homeschool or do a field trip (if Bill's available to drive) -- but we can be more laid-back than usual.

Good night:-)
Much Love,
Michele