IT'S RAINING, IT'S POURING ... BILL IS SNORING!

Hi Friends!

It's been a busy week, but I wanted to blog tonight before going to bed. I wanted to let you all know how well I am doing!

Monday - Wednesday we stayed busy with our homeschooling and regular household routines. Wednesday night Bill and I took Cameron to his high school for a meeting. (Molly babysat the little boys.) It was at 6:30 p.m. and for Juniors and Seniors to make sure they were on track for graduation. Bill got stuck late at work, so Cam and I went by ourselves and he was going to meet us there. Well, the Spanish meeting was in the large gymnasium, and the English meeting was in a small activity room. Partway through the meeting I got a phonecall (kept my phone on vibrate). I left the room to take the call from Bill who was in the gymnasium and a bit confused. We sent him in the right direction and he found us. Cameron told him, "That's what happens when you are not prompt!" It was pretty funny.

Tomorrow morning at 8 a.m., Molly will again watch the boys. Bill and I made an appointment with Cameron's individual counselor. Cameron will be there, too. Through some mistake with our new address, progress reports and reports cards were mailed out in October and November, but we never received them. And Cam thinks he flunked his psychology class, so we need to check into that. We also need to see when they are next administering the California Exit Exam. He's passed the English part, but he still needs to pass the Math part. And, finally -- his school locks all bathroom doors in the afternoon, and Cameron has weak bladder control. So, we need to find a way for him to use the restroom in the afternoon. We'll let you know how that goes. Bill and I will go with Cameron to school in the A.M. as it begins at 8 a.m.

Today I had an appointment with my rheumatologist, Dr. Cohen. He is very pleased that the 2 doses of Rituxan seemed to put my lupus into remission. We will continue that treatment (2 doses of chemo) every 6-8 months. I am still really fatigued, and he says that's because I am still recovering from the pneumonia. So, I will be starting CellCept soon, but not yet. CellCept is used for people who have had organ transplants to prevent rejection. It's an experimental treatment with lupus, but it basically should work the same way and keep my over-active immune system in check. But Dr. Cohen wrote the RX and wants me to wait until the fatigue goes away and I feel normal. Then I am supposed to call him and we'll get it started.

I also get to keep my PICC line 6 more weeks. Then they'll take it out assuming they won't be putting as many toxins into my body. At that point, chances for infections should go down! And other good news -- Dr. Cohen is designing and setting up his own infusion room in his office. He showed it to me today, and it looks great. He's got a big TV and 4 large, black, leather, massaging recliners. How nice to get an infusion in a spa chair. So, I'm looking forward to doing my future treatments there.

Dr. Cohen's 2 main concerns are -- my heart rate is way too high. It's 120 beats per minute when resting. So, I have to go back on the Propranolol to slow it down. He feels my heart was really affected during the last flare at the hospital. Also, my osteoporosis is getting worse due to all the steroids they've been pumping into me. I've been warned not to be too physical with my brittle bones. And soon, I'll be moving to IV drugs rather than Boniva for the osteoporosis.

So, there is where I stand, Dr. Cohen pointed out that it's been 6-8 weeks since Rituxan and I'm still doing well. Before that, he was pulsing me with the highdose steroids monthly. That's very encouraging:-)

Much Love,
Michele

P.S. -- Today Dr. Cohen changed my temporary handicapped parking pass to a permanent one. I guess he figures I will continue to be his most challenging/interesting patient.