Hi Friends!
I guess I haven't blogged for a really long time. It's been a fun, but busy week. On Monday, I spent the morning visiting my gynecologist. I had been avoiding it for as long as possible. They did some bloodwork, which confirmed that I am in perimenopause. Not a big surprise for me! I knew Cytoxin would most likely bring on menopause, but I didn't have a chance to research it much yet -- so I was caught a a bit off-guard. I can start hormone treatment (maybe -- in small doses) to relieve the symptoms, but first the gynecologist and rheumatologist need to confer about it today. Dr. Cohen wants to make sure I'm not prescribed too high a dose or it could make the lupus worse. I also get to have a mammogram and a pelvic ultrasound later this month. We will repeat all female testing every 6 months (Fun, fun!!!). Because of the Cytoxin, I am at increased risk for ovarian, cervical, and breast cancer -- so they will monitor me closely and try to catch the highly curable stuff early!
Also, on Monday -- we had a sad day because Judi's dog, Brandy, died. She had a collapsed lung and the vet tried to save her, but they couldn't. So, I ended up home-schooling my kids and watching Judi's kids all Monday afternoon while she was at the animal hospital. We are all very sad for the Malone Family. But they may be getting a new Golden puppy this weekend, so hopefully that will cheer the kids up!
Tuesday was the calmest day this week. We just did homeschooling and a regular day. Cameron and Bill had Boy Scouts and we got ready for our BIG DAY ...
On Wednesday, Annie and I took Cameron on a special outing to DisneyLand to celebrate his 16th Birthday! We left at 8 a.m. and didn't get home until after midnight. We had so much fun! Cameron said it was the best birthday ever. Because we didn't bring any siblings along, the day was all about him and he got to do whatever he wanted! We took a bunch of pictures using Annie's camera, so I'll post them later after she downloads them to my computer.
On Thursday, it would have been nice to rest and recover after the big Disneyland day, but it was a big day for Molly. She got her braces off. So, we had 2 appointments with her orthodontist -- 1st to remove the braces and make a mold for the retainer. Then later we had to come back to get the retainer. She is thrilled with her beautiful white, straight teeth and can't stop staring at herself in the mirror. She also got new glasses on Thursday, so it's like she's had a whole make-over!
We also had a huge BoyScout meeting at our house on Thursday night, so we had to clean it up. It was a tad trashed after my absence on Wednesday. Let's just say, Bill and the boys and Molly had a lot of fun, but they weren't very tidy.
This morning, I had an 8:00 a.m. appointment with Dr. Cohen. I dropped off Cam and Molly at school on the way to Thousand Oaks and made it in the nick of time. First for the good news -- No more chemo for me !!! I am done!!! At least until May. I can't get into UCLA until May now. They called and cancelled my March appointment with Dr. Karpouzas (the chief there), so that forced Dr. Cohen to make the decision. He says since I'm doing so well with the lupus now, he'd like to stop the chemo after 6 rounds. This is largely due to the side effects of it -- I've lost bone density, started menopause, and am having more urinary issues. (next visit -- a urologist, fun, fun!!) So, he and I both feel comfortable with stopping the chemo now and we can start again if I tank again. Dr. Cohen even gave me his cell phone number so that I can stalk him at all times of the day and night in emergency situations!
Nate and Isaac are finished with school for the day, and they are waiting for Shirlene to come and pick them up for the weekend. And then it will be time for me to pick up Cam and Molly from school. I'm looking forward to getting a little bit of sleep this weekend!
Much Love,
Michele
Facebook Badge
Friday, February 27, 2009
Saturday, February 21, 2009
DUCK PARK PHOTOS!!!
PLEASANT DREAMS!!!
Hi Friends!!!
I am having a lovely and laid-back weekend. We had Bible Study last night, and today my family let me sleep in until noon. Brandon came over to play with the boys today. Besides puttering around the house, I haven't done much of anything today.
However -- last night I had a very unusual dream. I'm calling it a vision. Because I believe it to be real. It was my Grandma Twohig (my Dad's Mom) and Mrs. Perrone (her friend/housekeeper/nanny). They looked like angels and they told me they've been with me throughout my entire sickness and that they're watching over me and helping me. I woke up with a sense of peacefulness and I believe that God let them come to talk with me to raise my spirits. And no, I'm not crazy or on anymore narcotics!!!
Tomorrow we'll have church and our family day. And then we have a busy week. We have several doctor's appointments scheduled. Also, my oldest son, Cameron, is turning 16 on Wednesday. I'm not sure where the time has gone or how I got old enough to have a 16 year old. But I am definitely proud of the young man he has become!
Much Love,
Michele
I am having a lovely and laid-back weekend. We had Bible Study last night, and today my family let me sleep in until noon. Brandon came over to play with the boys today. Besides puttering around the house, I haven't done much of anything today.
However -- last night I had a very unusual dream. I'm calling it a vision. Because I believe it to be real. It was my Grandma Twohig (my Dad's Mom) and Mrs. Perrone (her friend/housekeeper/nanny). They looked like angels and they told me they've been with me throughout my entire sickness and that they're watching over me and helping me. I woke up with a sense of peacefulness and I believe that God let them come to talk with me to raise my spirits. And no, I'm not crazy or on anymore narcotics!!!
Tomorrow we'll have church and our family day. And then we have a busy week. We have several doctor's appointments scheduled. Also, my oldest son, Cameron, is turning 16 on Wednesday. I'm not sure where the time has gone or how I got old enough to have a 16 year old. But I am definitely proud of the young man he has become!
Much Love,
Michele
Friday, February 20, 2009
WHO STANDS BESIDE YOU?
"A self is made, not given. It is a creative and active process of attending a life that must be heard, shaped, seen, said aloud into the world, finally enacted and woven into the lives of others."
Hi Friends!
I won't bore you with my ups and downs today. This is a story from Barbara Myerhoff in Remembered Lives.
"My grandmother was a tiny woman, shrunken as if some of the juice had been sucked out of her. But her hands, her timeless, precious hands, were an entire landscape, the veins risen to the surface, a network of rivers that flowed from her heart. Her long white fingers were rooted in the wisdom of escorting babies into the world and dying people out of it. When she was telling stories to explain things to me, these root-fingers seemed to point to what was buried beneath the surface of ordinary things. One Sunday she drew a large spiral slowly in the air and called it the Wisdom Trail.
'Each of us travel this path, round and round the spot of grace at our core. As we do, we come to the same intersections, the same challenges, over and over,' she said softly.
Transfixed, I saw what she spoke of in the air in front of us. The taxi horns, the pigeon wings flapping outside the window, the pizza smells from Esposito's restaurant downstairs all disappeared as Grandma's words carried me into the middle of this spiral.
'People walk this trail shifting from one foot to the other -- first a step of risk to learn something new; then a step of mastery so they can live what they've learned. If they use only their foot of risk, they spend their lives hopping nervously from thing to thing. But if they use only their foot of mastery, they get stuck and stagnant.'
Kneeling on the floor next to her in the kitchen while she made bread for the Sabbath, I watched my grandmother's floury hands leave prints on the red oilcloth-covered table as they walked across, illustrating the story.
'Sometimes people might thing they are going in circles, never making progress, even moving backward, but that's not true. It's just that each pass around, you gather more wisdom, so your trail is wider and you travel it with more grace from risk to mastery to risk again.'
She leaned toward me and whispered, 'What's important,' -- Grandma tapped the end of my nose with one dusty finger and then continued -- 'is that, whichever foot you use to walk this path, remember that there's no way to escape from yourself or what you came here to do.'"
Hope that helped you as much as it helped me, friends! I often feel for every few steps forward, I take several back. Now, I'll look at it as gaining more grace and wisdom!
Much Love,
Michele
Hi Friends!
I won't bore you with my ups and downs today. This is a story from Barbara Myerhoff in Remembered Lives.
"My grandmother was a tiny woman, shrunken as if some of the juice had been sucked out of her. But her hands, her timeless, precious hands, were an entire landscape, the veins risen to the surface, a network of rivers that flowed from her heart. Her long white fingers were rooted in the wisdom of escorting babies into the world and dying people out of it. When she was telling stories to explain things to me, these root-fingers seemed to point to what was buried beneath the surface of ordinary things. One Sunday she drew a large spiral slowly in the air and called it the Wisdom Trail.
'Each of us travel this path, round and round the spot of grace at our core. As we do, we come to the same intersections, the same challenges, over and over,' she said softly.
Transfixed, I saw what she spoke of in the air in front of us. The taxi horns, the pigeon wings flapping outside the window, the pizza smells from Esposito's restaurant downstairs all disappeared as Grandma's words carried me into the middle of this spiral.
'People walk this trail shifting from one foot to the other -- first a step of risk to learn something new; then a step of mastery so they can live what they've learned. If they use only their foot of risk, they spend their lives hopping nervously from thing to thing. But if they use only their foot of mastery, they get stuck and stagnant.'
Kneeling on the floor next to her in the kitchen while she made bread for the Sabbath, I watched my grandmother's floury hands leave prints on the red oilcloth-covered table as they walked across, illustrating the story.
'Sometimes people might thing they are going in circles, never making progress, even moving backward, but that's not true. It's just that each pass around, you gather more wisdom, so your trail is wider and you travel it with more grace from risk to mastery to risk again.'
She leaned toward me and whispered, 'What's important,' -- Grandma tapped the end of my nose with one dusty finger and then continued -- 'is that, whichever foot you use to walk this path, remember that there's no way to escape from yourself or what you came here to do.'"
Hope that helped you as much as it helped me, friends! I often feel for every few steps forward, I take several back. Now, I'll look at it as gaining more grace and wisdom!
Much Love,
Michele
Wednesday, February 18, 2009
YOU KNOW YOU'RE A MOM WHEN...
1. You pull the entire blue trash bin next to your SUV to clean it out.
2. Your teen-aged son, says -- "MOM!! Do you know where the potato chip bag I keep under my bed went?" (the day after you dug out his room -- only one week after the maids were here -- because your husbands says you only need them every other week.)
3. You think your 10 year old is a genius because he spends 3 hours creating "projects" out of aluminum foil.
Hi Friends!
I'll keep working on the list. These all happened just today. I am really feeling very good. Today I went down on my steroids to 4mg daily. I used to be at 60 mg. daily plus 3,000 IV monthly treatments. So, that is awesome. I am back to exercising and full of energy. I think I may be coming to terms with my lupus. At least, I'm starting to feel like me again. Like tonight, I am going to put the little boys to bed and then go grocery shopping. It's been a really long time since I've done that. The big kids will watch them. I've bribed them with a PPV movie. ($2 for Scooby Doo -- not a bad deal for me!) Bill has his Men's Group on Wednesday nights.
I'm enjoying homeschooling and spending time with my family again. And I've even been able to stop my sleeping pill at night since the taper down of Prednisone. That helps a lot. I needed to sleep, but it made me really groggy still in the morning.
Today California was sunny again, and Judi and I sneaked in a 2 mile walk. I wore sunscreen, but I'd still be in trouble with Dr. Cohen! There is a great park here in town (Lincoln) with a 1/3 mile track that circles a park. So, the kids play and ride bikes while we walk Judi's dogs around the track. Bingo, unfortunately, is old and even when he was young -- was never walking material!
Bill got another promotion at work, and he is now in charge of the entire lab. I'm proud of him even though it will undoubtedly mean more work in the short-term while he sets it all up. The overtime could be nice, however, and is needed right now for his high-maintenance health-care wife! I think that may be why God has me feeling better and skipping chemo this month.
Well, must go and put the boys to bed. I don't want to be at Ralph's too late tonight!
Much Love,
Michele
2. Your teen-aged son, says -- "MOM!! Do you know where the potato chip bag I keep under my bed went?" (the day after you dug out his room -- only one week after the maids were here -- because your husbands says you only need them every other week.)
3. You think your 10 year old is a genius because he spends 3 hours creating "projects" out of aluminum foil.
Hi Friends!
I'll keep working on the list. These all happened just today. I am really feeling very good. Today I went down on my steroids to 4mg daily. I used to be at 60 mg. daily plus 3,000 IV monthly treatments. So, that is awesome. I am back to exercising and full of energy. I think I may be coming to terms with my lupus. At least, I'm starting to feel like me again. Like tonight, I am going to put the little boys to bed and then go grocery shopping. It's been a really long time since I've done that. The big kids will watch them. I've bribed them with a PPV movie. ($2 for Scooby Doo -- not a bad deal for me!) Bill has his Men's Group on Wednesday nights.
I'm enjoying homeschooling and spending time with my family again. And I've even been able to stop my sleeping pill at night since the taper down of Prednisone. That helps a lot. I needed to sleep, but it made me really groggy still in the morning.
Today California was sunny again, and Judi and I sneaked in a 2 mile walk. I wore sunscreen, but I'd still be in trouble with Dr. Cohen! There is a great park here in town (Lincoln) with a 1/3 mile track that circles a park. So, the kids play and ride bikes while we walk Judi's dogs around the track. Bingo, unfortunately, is old and even when he was young -- was never walking material!
Bill got another promotion at work, and he is now in charge of the entire lab. I'm proud of him even though it will undoubtedly mean more work in the short-term while he sets it all up. The overtime could be nice, however, and is needed right now for his high-maintenance health-care wife! I think that may be why God has me feeling better and skipping chemo this month.
Well, must go and put the boys to bed. I don't want to be at Ralph's too late tonight!
Much Love,
Michele
Monday, February 16, 2009
PHONE NUMBER CHANGE!!!
Hi Again!
Just wanted you all to know that Bill and I have officially retired our land line, and we are now exclusively using cell phones for our family. I have one, Cam has one, Molly has one, and Bill has two (work and personal) -- so the land line was really one expense that was easy to trim. So, call us on our cells, or throw rocks at our windows, whatever!!! If you don't know our cells -- Nanny, nanny, boo boo! Just kidding! But I don't want to put our phone numbers out in cyber space, so call our old home number, and there will be a recording that gives you Bill's personal cell phone number. Just remember that he doesn't have it with him in the secure lab at work, so we may not get back to you immediately.
Good Night!
Michele
Just wanted you all to know that Bill and I have officially retired our land line, and we are now exclusively using cell phones for our family. I have one, Cam has one, Molly has one, and Bill has two (work and personal) -- so the land line was really one expense that was easy to trim. So, call us on our cells, or throw rocks at our windows, whatever!!! If you don't know our cells -- Nanny, nanny, boo boo! Just kidding! But I don't want to put our phone numbers out in cyber space, so call our old home number, and there will be a recording that gives you Bill's personal cell phone number. Just remember that he doesn't have it with him in the secure lab at work, so we may not get back to you immediately.
Good Night!
Michele
RAINY, MONDAY!!!
Hi Friends,
On a day like today, there's not much to do except stay inside and stay dry. (Like my budding artist, Isaac!) For those of you not in California -- it's been pouring rain. We've even had hail and thunder today. Definitely not your typical Southern California weather. We all stayed up late last night and slept in late this morning. Bill finished our taxes in the wee hours last night and the good news is that we'll have enough of a refund to pay our property taxes. God always works it out for us somehow someway, but it is a test of trust and faith at times.
At around noon, I made a brunch with french toast, using the big thick Texas toast. The kids were thrilled seeing as how I rarely cook anymore. I'm definitely not the June Cleaver I was pre-lupus, but we all seem to manage just the same. Bill is doing a lot of carrying us at the moment. So, when praying -- please keep that in mind. I worry about him, because I know it's hard to do his real job and be Mr. Mom, too.
This afternoon, Nate is over at Judi's. Molly is comforting the animals who are freaked due to the weather. Cameron is eating. He is such a teenager! That's all he does. He is now 6 feet tall and rail thin, so I'm actually just jealous! Isaac and Bill are off to where else -- Target -- to pick up more meds for me. It's a never-ending job. I am going to do some housework and laundry while I have some energy as tomorrow is shaping up to be a busy day with homeschooling and errands that need to be done. But no need to worry about that now, because tomorrow will happen in its own time!
Much Love,
Michele
Sunday, February 15, 2009
SUPER SUNDAY!!!
Hello Friends!!!
I thought I'd show you what a daily medicine regimen is like for me. Some of these are supplements I need to take -- like calcium(bones) and vitamin K (instead of sunlight), etc -- but most are meds for my CNS Lupus. And a shout out to my sweet husband, Bill, who manages all of these medications for me each day!
Today was a good day! Bill's friend, Scott, went to church with us. We came home and ate lunch. Then Bill and I took a nap while the kids hung out. I, unfortunately, have another kidney infection -- so I had to call my doctor who dutifully called in antibiotics to Target which my husband nicely picked up for me. They're both good to have on my team! Made some phone calls today to all the people who had been calling this week while I lay in bed sick from the chemo.
Right now the kids are playing video games, and we all promised Isaac we'd watch Ice Age with him later. Bill is talking about doing our taxes this weekend. Fun, Fun, but we're hoping for a big refund!!! Chemo isn't cheap and we're up to our eyeballs in medical debt! But -- No hurry to do state taxes as the state of CA is issuing IOUs this year. The state is broker than us!!! We all have Monday off for President's Day for a long weekend!
Much Love,
Michele
Saturday, February 14, 2009
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
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.
Thursday, February 12, 2009
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
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, February 7, 2009
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
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
Wednesday, February 4, 2009
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
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
Tuesday, February 3, 2009
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
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, February 2, 2009
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
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
Subscribe to:
Posts (Atom)
Posts
