Hi... this is going to be short, but I just wanted to let you know why I didn't post yesterday or today. I seem to have the flu, and I am feeling very sick. I'm just laying around in bed trying to recover. It started yesterday afternoon with vomiting and diarrhea. No fever, so that is good -- means that it's not a super-bad infection. Bill was sick a few days ago -- so I probably caught it from him, and I will have a hard time kicking it due to my weakened immune system. So, if you're reading this -- please pray that I get better soon and have a few days of health before doing my chemo on Monday.
Much Love,
Michele
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Tuesday, December 9, 2008
Sunday, December 7, 2008
SLEEP-OVER SATURDAY/SLEEPY SUNDAY
Hi Friends!
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
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!!!
Hi Friends!
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
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!!!
Hi Friends!
It's been a busy day and my head is spinning from all the thinking. Plus it was the only "th"word I could think of except "therapeutic," which is too medical. I'm trying to keep with the theme ... You know ... Manic Monday, Tornado Tuesday, Wacky Wednesday, and Thinking Thursday! Tune in tomorrow to see what Friday will be.
After sending all the kids off to school, Judi and I went walking. Then I spent the "school day" cleaning my house -- it doesn't sound busy, but it was. After picking up the kids and doing the regular homework that they all had, Nate and I worked on his President's report and managed to finish it. But it took us until dinner to do so.
We had dinner and I experimented with a Mexican theme -- chicken tortilla soup, enchilada casserole, and spanish rice. It went over fairly well. Somehow, between dinner and homework and bedtime and making luches for tomorrow and laundry ... I find it's 11 p.m. and time to take my Ambien.
Yesterday I took it at 8:30 p.m., and I thought I would go to bed when I got tired. The only problem is I apparently stayed up until 10:30, and did laundry, watched TV, talked to Bill, etc. I have no memory of doing any of that. It's apparently a great drug, because I can now do laundry and other mundane tasks while sleeping. Just kidding! But tonight I will take it and go directly to bed.
Tune in tomorrow for Friday's news.
Much Love,
Michele
P.S. -- The picture's not from today. It was a few weeks ago at Del Taco with Annie. Since then, I've actually lost 13 lbs and counting with the reduced steroids.
Wednesday, December 3, 2008
WACKY WEDNESDAY!!!
Hi Friends!
I'll start with my funny story of Ambien, which is the sleeping pill I told you about yesterday. I took it for the first time last night, and I told Bill about it. I wanted him to keep an eye on me since it comes with warnings saying " there have been reports of people sleep -walking, sleep -driving, and sleep -eating with amnesia of the event." Well, luckily I didn't do any of those things! I went to bed at 10:30 and fell right asleep. Praise God! Bill came to bed at 11:30, and he said I had a conversation with him about how I had been laying there for hours, but not sleeping. I have no memory of it, so apparently I talk in my sleep about not being able to sleep. I seriously must have sleep on the brain! But, seriously I did feel much better after a full night's sleep. I was still a bit groggy in the morning, however, and I had to go back to bed after sending the kids off to school. So, I'll try taking it and going to bed a bit earlier tonight.
After going back to sleep for a few hours, Judi and I did our usual walk. Then I came home and showered and got ready to meet the day. There is so much hair falling out when I wash it -- I can't believe I have any left. I thought I was looking really fine with my scarf today until Bill came home and called me "Aunt Jemima." Considering that the guys at work made fun of him for his orange motorcycle safety vest (even though it says Harley, it definitely doesn't look cool!), I figured he was just boosting his own self-esteem.
I spent the afternoon cleaning the house, and then before I knew it -- it was time to pick up the boys. Annie went with me and we picked up Cameron, Nate, and Isaac. Then she went to get us our daily Double Big Gulps from 7-11. (Last time I was in the hospital, I asked Bill if the 7-11 went out of business without me.) Molly stayed after school for CheerClub because there was a soccer game they were cheering for. Annie picked her up at 4:30.
Most of the kids had a lot of homework today, so we spent quite a bit of time on that. We just did instant stuff for dinner, because on Wednesdays Bill goes to a Men's Group with some other guys from our church. It's from 7-9 p.m.
Nate and Isaac built an elaborate "tent club" out of blankets, and they are sleeping in it tonight. At least, they're supposed to be sleeping. Right now, I hear a lot of giggling and talking. But, it's nice to see them getting along so well. And Cameron was so happy that they built the tent in Nate's room and Isaac would be sleeping there. That's because Cameron and Isaac are roommates, and well- you know how little brothers can be. Cameron was so excited about getting rid of Isaac that he hugged Nate. And Cameron is not a hugger!
I continue to feel REALLY GOOD. I am definitely convinced that the treatment is working. Of course, I will never go back to how I was before lupus -- but if it stays like this for even a little while, it is a blessing! Annie and I were talking today about how much I appreciate just being able to go and get the kids from school each day. If I had never gotten so sick, it might have been just a routine part of my day that I took for granted. Now, it's a part of my day that I treasure!
Well, I need to go off to bed. I took my Ambien and I am starting to get sleepy. I hope I'm not
sleep-typing this blog. Just kidding!
Much Love,
Michele
Tuesday, December 2, 2008
TORNADO TUESDAY!!
Hi Friends!
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
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
Monday, December 1, 2008
JUST ANOTHER MANIC MONDAY!!!
Hi Friends!
We all survived our first day back to school and with Bill back at work. It went well, but the kids and I had a hard time waking up so early after sleeping in over Thanksgiving Break. Bill had early morning meetings, so I drove the kids to school. (except Molly -- the Malone's always take her and Justin) Isaac did great, and didn't even cry about
going back to kindergarten. He had tried to say he "was sick" at home before leaving, so I wasn't sure how well it was going to go.
It is a big milestone for me to be back to driving again -- I am now dropping off and picking up my own children again. And, I am able to run errands and have a sense of independence again. Freedom is exciting at this point for me!
Other than that, I spent the day doing household and kid stuff. Judi and I managed our usual morning walk. Von's delivered groceries and I unpacked them. I feel back to normal again, but also today, like I ran a marathon. Luckily for me, Annie showed up with a Double Big Gulp for me and was extra homework help after school. If she hadn't -- I may have collapsed. I'm off to bathe and bed as I have an early morning doctor's appointment.
Much Love,
Michele
P.S. -- I'm dedicating today's blog to Judi, Annie, and Shirlene -- the 3 best "chemo buddies," a girl with lupus could have. They truly would do anything and have dropped everything to help me during this time. And also to Heather -- my littlest hospital visitor and friend. She's Judi's daughter, and Judi says I have to stop being so nice to her, because now Heather is saying she wants "Michele to be my Mommy."
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