TERRIFIC TUESDAY!

Hi Friends!

It's the eve of Christmas Eve and I'm feeling better today. I started the day with an appointment at 8:30 with my main doctor (the rheumatologist), Dr. Cohen. I feel really blessed that God led me to such a caring and knowledgeable doctor. Bill came along with me, because Dr. Cohen had especially requested he come along so that we could discuss "the course of my disease." Well, it sounded ominous, but we actually got some good news!

Dr. Cohen is impressed with my recovery, and both he and Bill have to keep reminding me of how far I have come. We discussed the course of my CNS Lupus as well as the treatment course and side effects of treating it with Cytoxan (the chemo I'm currently on). There are four things I need to watch for. The first is osteoporosis. I'm already taking preventative drugs for it as it's a side effect of the high dose steroids, and I have a family history of it. My mom has it as did other relatives. So, I'm getting a bone scan soon to determine my bone density and we'll go from there.

The second thing to watch for is heart disease and infections, which tend to happen with this disease. I've already had a full heart work-up, and so far -- so good! Dr. Cohen is doing more bloodwork and we'll keep a close eye on it.

The third thing is cancers, especially bladder, kidney, and breast. So, I will be screened for those starting now. These are side effects of the Cytoxan, but I'm also more at risk for cancer due to having an auto-immune disorder.

Fourth, as we all know -- being on the Cytoxan puts me at high risk for all infections. Basically, that is killing my over-active immune system (which was killing my brain, organs, and subsequently me!). Bu that, unfortunately, leaves me at high-risk and unable to fight routine infections which could be deadly. Currently, I have infections of my skin and mouth. And I often struggle with kidney infections. I'm also anemic from the Cytoxan and am currently having my platelets checked, because when I bleed, I don't stop!

So, my doctor wants to balance the benefits versus risks of treating me with Cytoxan, and therefore -- treat me with as few doses as necessary to reach the best outcome. The good news for me is that I'm on my 4th round of chemo, and if I show continual improvement -- I may be able to stop after the 6th round in February. I am cautiously hopeful! I don't want to get too excited. But it would be great if they could manage the lupus with oral medication after February. I was feeling really depressed about doing chemo until September, so it would be great not to have to do it. But I will let Bill and Dr. Cohen make that decision as at this point, they are more objective than I am. I am just in it too deep right now! We're supposed to keep a symptom log for the next month to help us decide.

We got home from the doctor's appointment around 11 a.m. That's another thing I like about my doctor -- he'll spend a lot of time talking everything over with us! You never feel rushed, although it's funny, because he again told me I'm his most "complicated case." We were thrilled upon arriving home, because the house was still in one piece with Cameron, Brandon, Molly, Nate, and Isaac all left home alone. And there weren't even any fights to report!

Bill is home again today, and the two of us are puttering around the house doing our own things. The kids are content to be off of school. Nate, Isaac, and Brandon have been building and "upgrading" a ramp outside. They are launching themselves on skateboards, scooters, and bikes off of it. Boys will be boys! They've only had 2 injuries so far, though, and only one has involved blood and required a band-aid. So, we're doing pretty well! I may, in fact, be the only injury to report as I am already sunburned due to be called outside to see all their "tricks." For those of you unfamiliar with lupus -- sun is a big no-no! I wear SPF 70 and a hat and cover up. But I still get sunburned and have symptom-flares when outside for any amount of time. It kind of takes the fun out of living in Southern CA. I like the sun, but the sun doesn't like me. I can't even pick the kids up from school without getting sunburned!

I am going to attempt to wrap the last of my Christmas presents today. We were given a bunch of gift cards from the deacons at our church, so I went out and picked up some stuff for the kids. However, I am at the moment "grounded" by my adoring and sweet husband, so I won't be attempting any more outings for awhile. He's probably right, because whenever I am feeling good, I have a tendency to go out and try to do too much. According to him, I need to conserve energy and try to let my body heal.

Tomorrow on Christmas Eve we will go to church, and we always go to the "Christmas House" here in Simi Valley afterwards. It's also a Bland family tradition to order pizza and for the kids to shop for and wrap presents for each other on Christmas Eve. Then on Christmas morning we open our gifts. Terri, my nice neighbor, is providing our ham dinner for Christmas. Yes, she's the same neighbor who made our Thanksgiving feast!

I will try and write more tomorrow.
Happy Holidays and Much Love!
Michele

P.S. --Bill is still working on our "annual Bland family year in review" Christmas CDs. We hope to have them out by New Years! Cut us a little slack due to the circumstances, please!