HAPPY VALENTINE'S DAY!!!

Happy Valentine's Day to all of my Friends!!!

I am recovering from chemo and feeling much better today. It was the first day that I ate two actual meals instead of just fruit or saltines, etc. So, I think I'm getting there. Bill called from work on Friday to see how I was doing and I told him I feel like I'm OK, and I'll just "fake it until I make it!"

Bill and I had a lovely experience on Friday evening. Because of the generosity of a friend who felt we needed some TLC, we ended up at the Holiday Inn in Simi Valley for the night with a romantic valentine's package. We had a room with a jacuzzi in it and got to spend the evening and this Valentine's morning as a couple relaxing and unwinding. Judi took Nate and Isaac ate her house, and Annie spent the night at our house with Cam and Molly. So, not only were the kids well-cared for, but they had a lot of fun, too!

We got home around 1:30, and spent the day around the house puttering. Bill and the kids worked on cleaning out the garage, and I worked in the house with Annie. We just ate dinner, and I'm doing laundry while the kids take baths/showers. Bill is putting a new dresser is Molly's room and switching TVs around so she's excited but will have some reorganizing to do later.

I'll try to write more tomorrow. We have a long weekend. Bill and the public-schoolers (Cam and Molly) are off on Monday for President's Day, so I think we'll all take the day off and veg out!!! The kids have been saying we haven't been to the park for a while! So, if the weather cooperates, we may try that!

Much Love,
Michele

P.S. -- Those are pictures of me on Monday at chemo. I was about to be hooked up to IV. I have gone from hot all the time to freezing all the time. I was very cold. The nurses were so nice -- they even brought me hot packs to hold in my hands because I was shaking so badly.

CHEMO STILL SUCKS!!!

Hello Friends!!!
I did chemo on Monday AND -- It would be nice if I was more of a Pollyanna, but chemo still sucks. I'm on the all fruit diet. My stomach was in so much pain that I couldn't eat much of anything. On Tuesday I ate 1 apple cut up and saltines, and on Wednesday I ate 1 pear cut up with loopy lemon lime soda -- fitting, hey?! I lost 10 lbs, but I'm not sure if that's the way to do it! I slept/lay in bed most of Tuesday and Wednesday. Today. I am actually out of bed and dressed, so I guess I am improving. People from church have been bringing us some lovely meals each night, which is a big help. And Annie is here as usual helping us out. I managed to home-school the boys this morning, and Bill took them to work this afternoon to see the airplanes, simulators, etc. It should be a cool field trip!

Much Love,
Michele

SATURDAY!!!

Hi Friends!

I'm sorry I haven't blogged for a while. I've still been struggling with a nasty headache. I ended up having to cancel to my GYN appointment on Thursday, because I was on narcotics and unable to drive. Basically, I managed to do my homeschooling with the boys on Thursday and Friday and not much else. I am hoping that the Cytoxan on Monday will kick the headache, but we'll have to see. I'm not sure if it's the lupus headache or not?!
Last night we had Bible Study at our house. I made it through with lots of Vicodin. I went to sleep after everyone left and spent most of today in bed, too. I am just now attempting to get up and do a few things. I am hoping to make it to church tomorrow as I may not make it for a week or two after chemo.

Much Love,
Michele

WONDERFUL WEDNESDAY!!!

Hi Friends!

We are having a wonderful day! We spent the morning home-schooling, and I must say that Nate, Isaac, and I are really enjoying the time together. They love the way they learn more while spending less time "at school" and having no homework. After lunch, we met Judi and Heather at Lincoln Park. There is a track that loops around the playground and is 1/3 of a mile. I'm supposed to be better about exercising to get more natural endorphins and keep my weak bones from getting weaker. It's nice place to walk because the kids can play, and we can see them while exercising. The boys brought their bikes and alternated riding bikes and playing on the playground. Judi and I managed to walk 2 miles before it was time to go and get the big kids. Lincoln Park is close to Royal High School (Cam's school), so I picked up Cameron and then Molly and Justin on the way home.

Cameron and Molly just finished up their homework and chores. I have a bunch of household stuff to get to also. The house sort of looks like it's been hit by a tornado. But, I'm drinking my daily Double Big Gulp (Thanks, Annie!), and I'm hoping to get some energy soon!

I'll write more tomorrow after my doctor's appointment. Let me leave you with the words of an old Chinese proverb, "To get through the hardest journey we need take only one step at a time but we must keep on stepping." So, I hope you're having a wonderful Wednesday, too -- and if not, FAKE IT UNTIL YOU MAKE IT! and just keep on stepping!

Much Love,
Michele

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

MONDAY!!!

Hi Friends!

Sorry -- I've been lazy about blogging for the last couple of days. I'm still getting back into the home-schooling swing of things with Nate and Isaac. It's fun -- but it does keep me busy!

This weekend Cam and Bill went to Boy Scout winter camp. They both had a really fun time. The other kids and I had a quiet weekend at home -- especially since we were left without a vehicle. We did a ton of decluttering and sorting through our junk -- and hopefully our trash is someone else's treasures. Our house looks much better, because you can't organize clutter. The entire front porch is filled with garbage bags for the Salvation Army to pick up tomorrow.

Today we got Cameron and Molly off to school and Bill off to work. Nate and Isaac worked really hard on their schoolwork, and they finished up by late morning. It's so nice to have them home again, and it really is a simpler life! We then had an appointment with Nate's new therapist in Agoura Hills. Nate is very sensitive and close to me. My illness has hit him hard, and he has expressed a fear that I am going to die. So, we felt he needed someone to talk to. He'll see Dr. Barrus every 2 weeks for as long as he needs/wants to.

After that, we went out for lunch. Upon coming home, I worked around the house, and Nate and Isaac did some building in the garage. Typical boys -- they constructed a "lay-n-ride." It's like a sit-n-spin. They attached wheels to a 6 foot piece of plywood, and used 3 bungee cords as seatbelts (safety first, of course!), and they nailed (yes, I said nailed!) a pillow on for your head. Then they had me come out while they tested it like crash dummies. It's a pretty good design and gets going quite fast! I really had to watch them in order to keep them from rolling out into the street.

Cam and Molly started their second semesters of middle/high school today. Neither of them had much homework, so we spent some time after school playing board games and card games. Then Will and Heather (from next door) came over to play while I made dinner.

I don't know where the evening went, but it's gone. We did dinner, baths, and I made some baked goods for my doctor. I had made him some Christmas cookies in December, but I forgot them at home. So, I have an appointment tomorrow, and this time I'm determined to remember the chocolate chip cookies and blueberry muffins that I made him. I really do appreciate what a great doctor he is!

So, tomorrow is the big day. My appointment is at 8:30. The boys and Bill are going with me. We will be making the big decision on whether to stop or continue my chemo after February's treatment (#6). I pray that we will make the right decision.

More tomorrow ...

Much Love,
Michele

WACKY WEDNESDAY!

Hi Friends!

Bill is off at church for Warrior Wednesday giving his talk. He was up until 2 .m. last night putting the finishing touches on it! I hope it's going well, and that we'll get to hear it when he comes home. Annie and I were thinking of dressing up like men and sneaking in , but we decided against it.

Homeschooling went well this morning. Nate and Isaac learned the story of Creation, and they did a daily devotional for Bible this morning. They also practiced their handwriting, read me stories, and learned about the different bones in health class. We had time to play a board game, which is really important for Nate to work on with socializing with others. He needs cues to be a gracious winner or loser, depending on how the game turns out.

At 12:20 -- I went to pick up Cameron from school. It was his last day of semester 1 Finals. He was glad to be done and come home. I spent the afternoon cleaning up around the house, and doing busywork. Nate and Isaac went over to Judi's to play with Will on the WII.

At 2:50 -- I walked to meet Molly from school. The walk is only .75 miles each way. But it's a nice chance to talk to her alone. After we got home, she invited Heather over to play with her. Heather is like her little sister!

I got a lot done this afternoon, I hired a cleaning service; filled out all the paperwork for the 1st Baptist ISP; made a gyn appointment. (The lupus/chemo has put me into early menopause.)

I even balanced my checkbook and paid some bills.

At 6: 00 p.m., Bill came home and got his materials before leaving for the church. Annie took me and the kids out to eat at Red Robin. She had bribed the kids with an special surprise earlier in the week IF they behaved for me. They had done pretty well until tonight -- at which point, they all seemed to go mental. But we had fun anyway.

Tomorrow and Friday, the kids have off of school. At 8:30 tomorrow Molly has an orthodontist appointment, at 10:30 I have my bone density scan, and in the afternoon Annie has a dental appointment. Then on Friday I am going out to lunch with my 3 chemo buddies, because 2 of them are having birthdays. So, that will be fun.

Much Love,

Michele