ALICE TO THE RESCUE...

Hi Friends,

Well...it's not like I meant to take a month off from blogging, but a lot has been going on. First of all, we're in the middle of a move. We didn't seem to fit in well to the "planned community" of RiverPark here in Oxnard -- or into townhouse life in general. So, since it will probably take about 3 years to do all the building out on our land (which Bill has termed "Rancho Suave" -- don't ask :-) we are moving into a more permananent but still temporary rental house closer to the kids' high school in Oxnard. I did the count and in our almost 20 years of marriage, this will be our 12th move...so hopefully the move out to the land will be our 13th and our last -- unless the kids have to drag us off to a nursing home at some point!!!

So, anyway right now we're in the midst of moving chaos. Bill and the kids (and Brandon, who stayed with us and helped for 3 weeks) have all the furniture and most of our stuff in the new house. All that we have left here are kitchen and bathroom stuff and our beds and a few boxes. We are planning to be into the next house this Sunday...and then we have until next Sunday to be completely out of this house and have it cleaned out.

As far as the lupus goes -- I haven't had the best month. I found it funny that my last blog entry was entitled "Uncooperative Kidneys," because they're still not being cooperative. If only my lupus would stop attacking my own organs. We all have to share one body -- Why can't we all just get along??? But for now that's not happening -- I did one course of Levaquin and the infection seemed to go away...but after 8 days it was back (or possibly never gone:-( So, I'm back on the Levaquin again -- and the infection is being really stubborn. Really hoping it goes away before this second course of oral antibiotics is done. Otherwise I will have to switch to IV antibiotics through the port...which isn't a pleasant thought -- as my port has been less than cooperative, too. Won't get into that today, though:-( I am seeing Dr. Cohen on Monday, so we can have the kidney chat then...as well as other discussions.

I went to UCLA with Bill on Wednesday to see Dr. Karpouzas, who is my head doctor and oversees my treatment plan. He is the Chief of Rheumatology at UCLA, and you can look at it in one of two ways. 1. You're pretty special if you get assigned to him. OR 2. You're really messed up if you get assigned to him. But seriously, he's a really great guy who's Greek -- very informed about this type of lupus and also very caring.

So, he really clarified what was going on for me. Basically I have the rarest form of lupus, because only 1% of all lupus patients have it affect the brain. All of you have very healthy hard brains, but I have a mushy brain, which leaks B cell subsets. The chemotherapy (Rituxan) we are currently doing penetrates my soft mushy brain, but it is just a short-term fix. That means we are basically just putting out the fire and my count goes up, but then the B cells deplete again and the lupus never goes into remission. Also, the Rituxan can only be done for 8 rounds (each round is 2times). This type of chemo is strong and I get a dose much higher than cancer patients. I've done 2 rounds of this type so far. So after 3 years -- I have yet to go into remission and that's what needs to happen.

And as he further explained -- 99% of the people with lupus affecting the brain respond to one of the treatments I've already had. So that's makes me 1% of the 1%, I guess...or as they like to say, "a very complicated case." Maybe one of my engineering friends can figure out the math. We've done Imuran and CellCept which are supposed to keep the lupus from attacking my brain and vital organs. No success. We did 9 rounds of Cytoxan (chemo) and only short-term success. We've also done tons of steroids both (orally and IV)and bunches of meds for the symptoms. So, apparently there is only one more oral drug to try -- methotrexate. And if that doesn't work, I'm out of options for now and will keep on doing the Rituxan until my 8 rounds are up. Instead of viewing it as my last option, I will remember that there are always new experimental drugs and studies coming out. Worse case scenario -- they can always do a stem cell transplant. Dr. Karpouzas also suggested a new drug Effexor for my fibromyalgia, so I'll probably try that too. It really is the least of my problems (fibro is another one of my many immune issues, but it is not life-threatening, just causes pain) --but Dr. Karpouzas has a lofty goal of keeping me pain-free.

As far as the current chemo goes -- I get to decide how often to do it. Ideally it would be done every 6 months. But right now it's been less than 3 1/2 months and my symptoms are already back. So, I could do it now, and I'd likely be in less pain and my nervous system would be better -- so I could drive and be more functional. But the problem with that is after chemo, I go from an overactive immune system (which attacks me) to no immune system (where I get pneumonia and all kind of infections that I can't fight off). Lucky me, they are letting me draw the line. So, I think I've decided to try the Methotrexate and hope it works while waiting until the regularly scheduled chemo in October. I'm on the highest dose of Percocet allowed for pain, but it's better than morphine or dilaudid which I've taken in the past. They would prescribe it if I want it, but I don't. I've been banned from driving after failing my neurological testing. Plus I don't like to take narcotics and drive. Safer for all of you other drivers on the road, but it's hard for me to lose that freedom. Luckily for me, Bill and Annie seem happy to cart me around. And while I am not able to physically do much around the house or get out much -- I am here for my kids. I believe that the most important thing I can do for my kids is to be here and love them...and I've learned how to do that from bed.

Now don't get me wrong...sometimes I still feel sorry for myself. For example, this morning I had dental appointments scheduled for me, Nate and Molly. It sounds silly, but I was determined to go even with my kidney infection because I haven't made it to the dentist for almost 2 years. And, I guess I just wanted to be like a "normal" person who could make dental appointments and take their kids (even if Bill was going to drop us off and pick us up). So, I got up this morning and got in the shower. The antibiotics make me very sick to my stomach and my kidneys were giving me serious back pain. After throwing up in the shower, it became painfully obvious even to oblivous me that I should not be sitting in a dental chair today. So I woke up my poor husband and he switched his morning meeting to afternoon and took the kids and stayed with them. And since he has an appointment with the same dentist in 2 weeks, he switched appointments with me. And maybe I'll be better then. Or not, we'll see. And today...Bill talked me down as I cried about not being able to go to the dentist. He very rationally told me that I shouldn't feel bad about having a disease. It is what it is. So, I snuggled back in with Isaac who was so cute in my bed with his favorite stuffed animal (a dog named Butterscotch), took some more Percocet, and spent the rest of the day in bed.

Because Bill spent the morning at the dentist with the kids, he worked until 7 p.m. He did call and ask if I wanted to go to a social with his coworkers after work. I laughed hysterically, because when he left he told me not to get out of bed.

And the story for today ends with me calling and sending a FaceBook S.O.S. to Annie, who we call Alice -- because she's the Alice to our Brady Bunch. I was feeling lonely hanging out in bed while moving went on around me...but life goes on. Like a true friend, she came not only to keep me company but with McDonald's for dinner. In fact, she even beat Bill home tonight. And she brought her laptop and wireless connection for me to do this blog on. Our internet is disconnected for the move...and I can do e-mail and FaceBook on my phone, but it's not the same as blogging for me. This serves as not only information for my friends and family -- but as a way for me to look back on my experiences in my loopy life. The mushy brain and narcotics don't help my memory much.

I think my movers have called it quits for the night. Molly and Annie are on a chocolate run, so I can't wait to see what they bring back. And Bill brought me a bottle of Jameson, which is always good. He actually stopped and got 2 big bottles of soda, too. Because you all know how much I love my soda. But sadly, the sodas fell off his motorcycle somewhere between the 99cents store and the liquor store. So, he learned his lesson and brought the liquor home in his jacket...I told him he was lucky he didn't cause an accident with the rolling soda bottles on the freeway OR get pulled over by a cop with Jameson in his jacket. Even though the bottle wasn't opened, it could have made for an interesting pat-down and discussion about how his sick wife needs her alcohol:-)

Annie is going to spend the night on one of our mattresses. We have great accomodations here. I'm leaving to eat chocolate and take more percocet. I will have internet at the new house as of the 20th, so I will get back to blogging then if not sooner. Thank you, thank you, thank you for all your prayers and good wishes. I love you all.

Shel