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Tuesday, December 30, 2008
ISAAC PLAYS SUPERMAN!!!
Friday, December 26, 2008
THE DAY AFTER CHRISTMAS!!!
Thursday, December 25, 2008
CELEBRATING JESUS' BIRTH!
Wednesday, December 24, 2008
REFLECTIONS ON 2008!
Hi Friends!
Merry Christmas Eve! This is the video that Bill made of me for the year of 2008. When I first saw it, I cried. Bill did, too. It was just so dramatic to see how much the lupus, steroids, and chemo have changed my appearance. But as hard as this year has been, I wouldn't change it. As always, I have faith that God knows better than I do. This isn't the path I would have chosen for myself. I wouldn't have had the wisdom to do so. At times it seems too hard, but if you never climb the mountain -- you won't have your breath taken away by the beauty of the view on top of it. I've grown as a person, child of God, Mom, wife, and friend this year. I'll never be the same as I was before, and as the year ends -- I want to thank God for being more concerned about my character than my comfort. I also want to thank Him for all of you reading this. Without your love and consistent prayer support, I wouldn't have made it this far.
I just finished ordering our pizza from Pizza Hut. It'll be coming at 4 p.m. I love internet ordering. Shirlene just dropped off Brandon and the boys. Nate and Isaac spent the night there in Palmdale last night. Isaac came back minus one front tooth. And the other one is hanging by a thread! He looks pretty cute!
I did manage to finish wrapping presents last night after the boys left. Cameron and Bill had Boy Scouts last night. So, Molly and I had a quiet girl's night. After wrapping the presents, we watched a movie. Then I took my Ambien and went to bed. I told Molly she was in charge, and that she shouldn't let me leave the house.
Today we will go to church, the Christmas House, and the kids will Christmas shop for each other. I love you all!
Happy Holidays!
Michele
Tuesday, December 23, 2008
TERRIFIC TUESDAY!
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!
Monday, December 22, 2008
MONDAY, MONDAY ...
Sorry, it's been awhile since I last blogged. I am slowly recovering from my 4th round of chemo. I feel OK, but I have been struggling again with headaches. Also, I am feeling somewhat depressed because the road ahead of me seems so long. Bill was working on our Christmas slide show last night, and it was rather sad to see how much I've physically changed over the year.
The kids are off of school this week and next for Christmas. Bill is staying home to help this week as I'm not ready to take over all the Mom duties yet. I will attempt to do some laundry and other stuff today, though.
Here's hoping that the week gets better and I catch the Christmas spirit again. I do have a few Christmas presents left to wrap for the kids. Maybe!
Much Love,
Michele
Friday, December 19, 2008
FINALLY FEELING THE CHRISTMAS SPIRIT!!!
Well, better late than never! I am finally starting to feel like it's Christmas. Sorry, I haven't written for a while. I've spent the week recovering from chemo. It was definitely better to only do the one day of chemo without the IV steroids. I just hope the lupus symptoms stay away, so that I can continue this course of treatment. Although the steroids can be fun, what with the slanty floors and slurred speech -- when you crash, you really crash and burn!
On a good note -- without the steroids to make me obsessively clean, I have resisted the urge to clean my house. I've let Bill and the kids trash it. By yesterday, I was ready for an outing though ~ so Annie and I did some Christmas shopping. We went to Kohl's and the 99 cents store. We are giving our kids money this year, but I wanted to pick up a few things from Santa to put under the tree. I might have gotten a bit carried away, but it was fun -- and a few hundred dollars later we came home, and we spent hours wrapping it all up. We eventually ran out of wrapping paper, but not to worry -- we finished today!
Today was the last day of school for the kids before Christmas Break. Isaac and Nate got done at noon, and they both had Christmas parties at Grace Brethren. I was feeling up to going, so Judi took me to their parties, and we spent the morning there. Brandon had the day off of school due to snow in Palmdale, so he came over for the day. The boys spent the afternoon playing with Brandon. The highlight of their day was when Bill came home, and they all spray-painted their skateboards with glow-in-the-dark spray-paint. Shirlene took Nate and Isaac to Palmdale to spend the night after she finished with work. So, hopefully right now Brandon, Nate, and Isaac are having fun playing in the snow!
Molly and Cameron had school until the regular time -- 3 p.m., and Bill picked them both up (but separately) on his motorcycle. Molly was thrilled because Chris (the boy she likes) saw her on the motorcycle. Now, the older kids are both enjoying a quiet evening without their younger siblings!
We continue to be well cared for by our church family! Dinner has been provided for us all week. We also received a bunch of groceries today from the deacons, and a "gift card tree" was delivered to us by our favorite deacon, Skip! It was a small Christmas tree with quite a few gift cards on it. I am always blown away by how much God cares for us!
Judi took pictures of me with the boys at school today. So, I'll try to get those from her soon and post them on this blog. I am going to sign off for now.
Much Love,
Michele
Tuesday, December 16, 2008
Keep on Trekkin'!
Greetings to all my viewers, family, friends, chemo buddies and all!
Well, had Chemo #4 yesterday - the first without the high dosage steroids - Wow!
I must say it's more enjoyable with the steroids - go figure. With the steroids I feel
a little "high" which makes the chemo easier to handle. Without them, I feel more "down and yucky" vs down and out. (ha ha)
Annie took me to The Hat for lunch after chemo. I was able to enjoy my grilled cheese sandwich before the nausea set in. When we got home I took my anti -nausea meds and spent
time resting in bed with the occasional nap. Life went on downstairs with one of the kids coming up to visit at different times.
Today I am feeling okay but sick to my stomach, so I am taking it easy and taking the meds as directed for the nausea. Getting a little tired so I'll close for now. Depending on how I feel later, I might add more for today's blog.
Much Love,
Michele
Sunday, December 14, 2008
SUNDAY BEFORE CHEMO!
Saturday, December 13, 2008
Saturday Before Chemo!
Thursday, December 11, 2008
WATCH OUT, I'M BACK!
Tuesday, December 9, 2008
FEELING YUCKY!
Much Love,
Michele
Sunday, December 7, 2008
SLEEP-OVER SATURDAY/SLEEPY SUNDAY
I didn't write anything yesterday, so now I'll try to catch you up on the weekend. I'm starting to feel a bit "odd" again -- the lupus symptoms tend to come back when it's close to chemo time again. My next chemo is scheduled for the 15th.
On Saturday Bill took the boys on a Boy Scout camping trip to California City. They left in the afternoon. Molly invited some girlfriends over for a sleep-over on Saturday night. She ended up with 3 girls from school plus little Heather from next door. Annie came to help me supervise the girls, which turned out to be a good thing. Apparently my cognitive function is not quite back, because Bill had set my P.M. and bedtime medicine out for me before he left -- but I accidentally took my Ambien (the new sleeping pill) at 5 p.m. -- an hour before the girls were scheduled to arrive. I realized it too late, and I managed to call Annie to tell her we had a "BigGulp emergency." She showed up shortly with our daily Big Gulps and movies from BlockBuster for the girls to watch. That was helpful, and I made it until 10 p.m. when I fell asleep with my head on the dining room table. The girls had a great time, giggled, did make-overs and "girlie things," and talked a lot, and stayed up until after 4 a.m.! It's all a blur to me, which may be a good thing, but thank goodness Annie was here to supervise.
This morning we woke up at 8:30, and the girls were already up. We had donuts and they played games, painted nails, and rode a Hannah Montana beanbag down the stairs. The girls got picked up at 11 a.m., and Annie, Molly, and I went out for a girls' lunch at Chiles. We had a nice time. (Thanks, Annie!) Then, we came home, sat, and just enjoyed the quiet! Annie is having some health problems, too (Prayers would be appreciated.) -- So neither of us was feeling that great,
This afternoon Molly and I watched "The Bucket List" and the boys came home around 6 p.m. They had a good time riding their dirtbikes and go-kart and doing "boy things." Bill got the truck unloaded and we spent the evening cleaning them up and winding down from the weekend. I'll try to post pictures of the weekend later this week. But for now -- I'm off to bed so that I'm ready for the week.
Much Love,
Michele
Friday, December 5, 2008
FREAKY FRIDAY!!!
Well, what else could I name it?! This will be short as I'm not feeling well. I had my lupus headache, and in order to kick it -- I needed to take my Vicodin. So, now that's better but I'm tired. And I am also feeling sick to my stomach today. Hopefully, it's just a bad day and will pass by tomorrow. Tomorrow Bill is taking the boys on a camping/riding overnight, and Molly and I are staying home so that Molly can host a slumber party. I'll need to be in good shape to handle a bunch of giggling girls.
Other than that -- it's been a pretty typical Friday. Everyone had a good day at school. Nate's class went on a field trip to sing at a retirement home, and he seemed to enjoy it. Cameron and Molly are both having issues with bullying at school. Doesn't everyone in junior high and high school? But your prayers for them would be appreciated. Today they both had uneventful days, which was good. And seeing that it's Friday, everyone had minimal homework. That was also good since I'm not feeling well.
Bill had to stop at Wal-Mart for meds on the way home from work, so he hasn't arrived yet, Annie is over helping, and she is watching Ghostbusters with Cameron and Isaac. Cameron is thrilled to have someone new to watch it with as it's his current favorite movie, meaning he watches it repeatedly. Molly is upstairs watching Hannah Montana. And Nate went to spend the night at Brandon's house. Shirlene picked him up after work this afternoon. I'm going to turn in for the night, and I will hope to feel better tomorrow.
Much Love,
Michele
Thursday, December 4, 2008
THINKING THURSDAY!!!
Wednesday, December 3, 2008
WACKY WEDNESDAY!!!
Tuesday, December 2, 2008
TORNADO TUESDAY!!
I saw my main doctor -- Dr. Cohen, a rheumatologist -- today and I have great news! I am doing so well that my next 9 treatments will only be chemo (Cytoxan). I won't need to do the high - dose IV steroids anymore unless I have a recurrence of the lupus symptoms. I am thrilled, because 3000 grams of Solumedrol monthly makes you crazy and fat. And I get to taper off my oral Prednisone (steroid pill ) -- the one I hate because it gives you "moon face" and makes you puffy, but I've learned to love after it helped in my cure. At worst, I was taking 60 mg per day, and now I'm down to 10 mg. We have to taper completely off slowly -- 1 mg at a time or all the bad stuff could come back. So, it will take about 8 months to get me completely off Prednisone. But already, I see the lower dosage is nice as I've lost 11 pounds. I'm also off several more of my meds and now down to taking only 10 meds + all the vitamins and supplements my doctor has recommended. Anyway, Dr. Cohen was very pleased that I'm doing so well. And I'll go back and see him in 3 more weeks. He's asked me to bring Bill along so that we can discuss the typical course of this disease. For example, it usually attacks your heart -- so we need to be very proactive and try to stay one step ahead of this crazy thing.
So Praise God and Thank you for all the prayers. If you're praying for me right now -- I'm trying two new meds, ambien cr for insomnia (side effect of some of the other meds), and a new one for my mouth. My immune system even attacks my own mouth, so I've been dealing with a fungal infection there that won't go away for months. It's a little thing, but it is driving me crazy.
The doctor's appointment was at 9:30 this morning in Thousand Oaks, so Annie and I went after taking Nate and Isaac to school. After the appointment and getting prescriptions filled there, it was close to 11 a.m. We went and had lunch at SubContractor's -- very good and a whole vegetarian menu, so I loved it! Then we were off to Wal-Mart and on several other errands, which ended up taking the rest of the afternoon.
We got to my house and unpacked our stuff. Then it was time to pick up kids. I went to get Nate, Isaac, and Cam, and Annie went to get Molly and took her to her orthodontist appointment. We got home around 3:30 and had until 5 to get chores, homework, etc. done and be ready to go to Isaac's Christmas Program for school. So, it was a bit of chaos!
The Christmas Program was at Grace Brethren Church, and was for the K-1,K-2, and 1st grade classes. It was really cute. Annie came, and Judi came with her family. The program was very touching, and all 3 of us were crying. Isaac looked very cute in dress slacks and shirt with a tie!
We took video that we can share and lots of pictures that I'll post later -- because they're on Annie and Judi's camera.
After that Bill and Cam had to go to Scouts. Annie and I brought the other kids home and we fed them quick instant dinners because it was getting late. They're now all in bed, and I took my first ambien pill, so I'm thinking sleepy thoughts. I'll sign off now.
Much Love,
Michele