Hi Friends!
Well, it's official -- the pneumonia is gone and Dr. Nathan is pleased with my progress. So, now I'm getting bumped back from the infectious disease doctor to Dr. Cohen, my main doctor -- the rheumatologist. We'll see what new torturing (oh, I meant to say, curing) therapies he has in store for me on the 10th. Bill was laughing at me for purposely staggering the appointments. He thought I should see Dr. Cohen right away this week as I'm cured. I told him I need 10 days to be "normal" before jumping on the lupus roller coaster again. My home health nurse was here today to change my PICC dressing and check me over. She is not happy with my blood pressure (too low) and heartbeat (it's odd) -- so I know we'll be doing some med changes. Oh well, too much good news in one day might give me a big head :-)
Today was busy and I had trouble going to sleep last night, so I am tired. We homeschooled today and even made it to the park for PE and my walking. Besides the 2 medical appointments I had, we got caught up on dishes and laundry. I was behind on both, so it took most of the day and the kids' help to catch up! And Bill picked up Cameron, but then he had to go back to work and stay late. So, I didn't have my chef to cook dinner. Luckily, the kids were content to microwave instant food for themselves.
Hopefully, I'll get a better night's sleep tonight and tomorrow will be a bit slower-paced.
Much Love,
Michele
Facebook Badge
Monday, November 30, 2009
Sunday, November 29, 2009
IT'S A SMALL WORLD...LIFE'S A JOURNEY...B+
Hi Friends...
God's really been talking to me today, and no-- I'm not on any narcotics these days. I just finished watching Extreme Home Makeover. I don't usually watch it, because generally while I think the families are deserving -- the houses are just a bit over-the-top for me. But anyway, I watched it today, and they were building a new house for a boy with leukemia. He had just finished chemo treatments and had a very compromised immune sytem. (Sound familiar?) Unfortunately, their house was full of mold. Because of all his medical bills, the family couldn't afford to renovate the house. And the mold was life-threatening to this boy. Well, they got their new mold-free house and the boy (named Cameron -- sound familiar?) started a foundation to help the hospital thats helping him. His foundation and his attitude comes from a motto -- It's B+ (positive) which is his bloodtype. I will strive to take the advice of a little boy when it comes to my illness.
And then, there's my Cameron ... and the "It's a Small World!" story. We have a new psychiatrist treating Cam and Nate since we moved. When Dr. Kumar (who now is in Agoura Hills) was going through Cam's medical history, Bill told him about all his hospitalizations. Remember when Cam was really little (5-6 years old) and he was hospitalized at Fairfax Psychiatric Hospital in Washington state? Well, guess who the attending physician was there at that time -- you guessed it, Dr. Rajiv Kumar -- the current doctor we're seeing. Bill pulled out Cameron's medical records and the discharge summary and sure enough, Dr. Kumar was the one who signed it. I was floored by that and by how far Cameron has come. I remember wondering how we would manage Cameron's disabilities (he's autistic and bipolar), but day by day we did-- and now he is the most wonderful teenager I know. So, I'll strive to remember Cameron and Nate's journeys with their illnesses. I know what a strong family we have and that tells me...I can make it, too :)
And finally, Bill was unpacking the last of the boxes in the garage today, and he found one of my journey magnets. Today, I saw it on the frig. If you remember, it went with necklaces spelling out the letters of the word journey, which I gave to my kids and to my chemo buddies (Shirlene, Annie, and Judi). Dr. Cohen has commented often on my strength and my HUGE support system (which brings the strength, I believe) and I am truly blessed.
Even if you didn't receive one of the letters (there were only 7), I feel blessed to have you on my team. I often reflect on the fact that people all over the country are praying for me. As the card says --
Join me ... I've sent you one of the seven letters of the word journey as a simple reminder that you and six others will form the circle of support I will need. Knowing, as I travel the road ahead, I will never be alone. I was touched when I saw this again -- just thinking that God and all my friends/family have my back. For example, when we went to church last night, I was talking to Pastor Jeff about how Bill has been trained to give me IVs. And we discussed that it's a real comfort to know that when we said those wedding vows almost 20 years ago ("in sickness or in health"), we meant them. I know that I can count on Bill no matter what! That's why I have the lion (bold protector) with Bill's signature tattoo on my back.
As far as today goes... we slept in for our last day of Thanksgiving break. I think that tomorrow will be a challenge getting up for school. I took the kids to the park and Bill even brought Bingo. I'm losing some puffiness and weight now that I'm walking again, but I look ridiculous with the face mask, sunglasses, and hat that I have to wear. But I can't chance anymore infections!!! Kind of looks like a cross between Michael Jackson and a bank robber.
I also drove over to Walgreen's to buy a special Christmas present for Molly. Again, I can't reveal that now, because she often reads or does my blog for me. But I know she's going to love it. We did some chores around the house. Nate and Isaac love getting their socks wet and soapy and skating around on the tile to clean it. So, they had fun and the floors are shiny. WIN for them, WIN for me! Bill and Molly and Isaac went grocery shopping and Bill is currently putting the food away. The kids are taking baths/showers and heading off to bed. And I'm waiting for my turn in the soaking tub. Even though we have 3 bathrooms with 3 showers and 2 tubs, the big soaking tub is everyone's favorite.
Tomorrow will be a busy day. I am determined to get in a good day of homeschooling. I also have 2 medical appointments. At 11 a.m. Karen, my home health nurse, is coming to change the dressings on my PICC line. And at 3:45, I have an appointment with Dr. Nathan (Infectious Disease Doctor) to see if the pneumonia is finally gone. Bill has even said I can drive myself, so that he can pick up Cam from school at 3:20. I do seem to be feeling better -- both lupus and pneumonia -wise. Bill says it's just a very slow process and I'm very fragile.
Your prayers for my continued health, especially no more pneumonia are much appreciated. If all goes well, when I meet with Dr. Cohen on December 10th, I will be able to start CellCept. That is an oral medication (in a way just like the chemo) which should keep my over-active immune system in check. I'll be happy to take it for the rest of my life, especially if it means less IV steroids and $37,000 chemo sessions. Anyway, what's a few more pills a day? I counted today and I currently take 42 pills a day. That's 26 different types but some are done more than once a day. And again, my sweet husband orders, picks up, and dispenses all these drugs to me. Of course, that's not including pain pills, sleeping pills, etc in the 42 number -- I have those pills to take at my discretion.
Well, I will go and see if the bathtub is free. Time to Saran Wrap my PICC line. The kids get a kick out of helping me to do that. I can't do it myself as the line is on my upper left arm. We have to tightly wrap Saran Wrap around the arm and line to keep it protected from the water.
More tomorrow....
Much Love,
Michele
God's really been talking to me today, and no-- I'm not on any narcotics these days. I just finished watching Extreme Home Makeover. I don't usually watch it, because generally while I think the families are deserving -- the houses are just a bit over-the-top for me. But anyway, I watched it today, and they were building a new house for a boy with leukemia. He had just finished chemo treatments and had a very compromised immune sytem. (Sound familiar?) Unfortunately, their house was full of mold. Because of all his medical bills, the family couldn't afford to renovate the house. And the mold was life-threatening to this boy. Well, they got their new mold-free house and the boy (named Cameron -- sound familiar?) started a foundation to help the hospital thats helping him. His foundation and his attitude comes from a motto -- It's B+ (positive) which is his bloodtype. I will strive to take the advice of a little boy when it comes to my illness.
And then, there's my Cameron ... and the "It's a Small World!" story. We have a new psychiatrist treating Cam and Nate since we moved. When Dr. Kumar (who now is in Agoura Hills) was going through Cam's medical history, Bill told him about all his hospitalizations. Remember when Cam was really little (5-6 years old) and he was hospitalized at Fairfax Psychiatric Hospital in Washington state? Well, guess who the attending physician was there at that time -- you guessed it, Dr. Rajiv Kumar -- the current doctor we're seeing. Bill pulled out Cameron's medical records and the discharge summary and sure enough, Dr. Kumar was the one who signed it. I was floored by that and by how far Cameron has come. I remember wondering how we would manage Cameron's disabilities (he's autistic and bipolar), but day by day we did-- and now he is the most wonderful teenager I know. So, I'll strive to remember Cameron and Nate's journeys with their illnesses. I know what a strong family we have and that tells me...I can make it, too :)
And finally, Bill was unpacking the last of the boxes in the garage today, and he found one of my journey magnets. Today, I saw it on the frig. If you remember, it went with necklaces spelling out the letters of the word journey, which I gave to my kids and to my chemo buddies (Shirlene, Annie, and Judi). Dr. Cohen has commented often on my strength and my HUGE support system (which brings the strength, I believe) and I am truly blessed.
Even if you didn't receive one of the letters (there were only 7), I feel blessed to have you on my team. I often reflect on the fact that people all over the country are praying for me. As the card says --
Join me ... I've sent you one of the seven letters of the word journey as a simple reminder that you and six others will form the circle of support I will need. Knowing, as I travel the road ahead, I will never be alone. I was touched when I saw this again -- just thinking that God and all my friends/family have my back. For example, when we went to church last night, I was talking to Pastor Jeff about how Bill has been trained to give me IVs. And we discussed that it's a real comfort to know that when we said those wedding vows almost 20 years ago ("in sickness or in health"), we meant them. I know that I can count on Bill no matter what! That's why I have the lion (bold protector) with Bill's signature tattoo on my back.
As far as today goes... we slept in for our last day of Thanksgiving break. I think that tomorrow will be a challenge getting up for school. I took the kids to the park and Bill even brought Bingo. I'm losing some puffiness and weight now that I'm walking again, but I look ridiculous with the face mask, sunglasses, and hat that I have to wear. But I can't chance anymore infections!!! Kind of looks like a cross between Michael Jackson and a bank robber.
I also drove over to Walgreen's to buy a special Christmas present for Molly. Again, I can't reveal that now, because she often reads or does my blog for me. But I know she's going to love it. We did some chores around the house. Nate and Isaac love getting their socks wet and soapy and skating around on the tile to clean it. So, they had fun and the floors are shiny. WIN for them, WIN for me! Bill and Molly and Isaac went grocery shopping and Bill is currently putting the food away. The kids are taking baths/showers and heading off to bed. And I'm waiting for my turn in the soaking tub. Even though we have 3 bathrooms with 3 showers and 2 tubs, the big soaking tub is everyone's favorite.
Tomorrow will be a busy day. I am determined to get in a good day of homeschooling. I also have 2 medical appointments. At 11 a.m. Karen, my home health nurse, is coming to change the dressings on my PICC line. And at 3:45, I have an appointment with Dr. Nathan (Infectious Disease Doctor) to see if the pneumonia is finally gone. Bill has even said I can drive myself, so that he can pick up Cam from school at 3:20. I do seem to be feeling better -- both lupus and pneumonia -wise. Bill says it's just a very slow process and I'm very fragile.
Your prayers for my continued health, especially no more pneumonia are much appreciated. If all goes well, when I meet with Dr. Cohen on December 10th, I will be able to start CellCept. That is an oral medication (in a way just like the chemo) which should keep my over-active immune system in check. I'll be happy to take it for the rest of my life, especially if it means less IV steroids and $37,000 chemo sessions. Anyway, what's a few more pills a day? I counted today and I currently take 42 pills a day. That's 26 different types but some are done more than once a day. And again, my sweet husband orders, picks up, and dispenses all these drugs to me. Of course, that's not including pain pills, sleeping pills, etc in the 42 number -- I have those pills to take at my discretion.
Well, I will go and see if the bathtub is free. Time to Saran Wrap my PICC line. The kids get a kick out of helping me to do that. I can't do it myself as the line is on my upper left arm. We have to tightly wrap Saran Wrap around the arm and line to keep it protected from the water.
More tomorrow....
Much Love,
Michele
Saturday, November 28, 2009
CHURCH ON SATURDAY!
Hi Friends!
Today seemed to race by. I think it was because we went to bed late last night and slept in this morning. The kids slept until almost noon and Bill and I slept until almost 1 p.m. When we got up, I went to the park with Nate, Molly, and Isaac. Molly and I walked and the boys played at the park. Nate has a girlfriend, named Tajay, that he meets there daily. It's cute, but I'm keeping my eye on it. It was a beautiful day outside in Oxnard with temperatures in the high 70s. Not only was I wearing my mask and sunglasses for pollen protection, but my husband made me wear a big hat. I got so warm walking that my glasses kept steaming up.
We stayed at the park until about 3:30. Then we came home and did chores and got ready to go to 5:30 church in Simi Valley. We decided that since we're not morning people -- maybe we should try Saturday night service. I hadn't been to church for weeks because of the pneumonia, so it was nice to go and worship and see old friends, too. We hit a Carl's Jr. drive-through on the way home for dinner, which was a treat for the kids. We got home around 7:30 p.m. and the kids are all off doing their own things. Bill is out organizing in the garage, which seems to be a never-ending project. I'm going to tinker a bit on the computer and then lay down and watch some TV.
The computer is right next to the fireplace and it feels nice and warm right now. The temperature was in the low 50s on our way home.
More tomorrow...
Much Love,
Michele
Today seemed to race by. I think it was because we went to bed late last night and slept in this morning. The kids slept until almost noon and Bill and I slept until almost 1 p.m. When we got up, I went to the park with Nate, Molly, and Isaac. Molly and I walked and the boys played at the park. Nate has a girlfriend, named Tajay, that he meets there daily. It's cute, but I'm keeping my eye on it. It was a beautiful day outside in Oxnard with temperatures in the high 70s. Not only was I wearing my mask and sunglasses for pollen protection, but my husband made me wear a big hat. I got so warm walking that my glasses kept steaming up.
We stayed at the park until about 3:30. Then we came home and did chores and got ready to go to 5:30 church in Simi Valley. We decided that since we're not morning people -- maybe we should try Saturday night service. I hadn't been to church for weeks because of the pneumonia, so it was nice to go and worship and see old friends, too. We hit a Carl's Jr. drive-through on the way home for dinner, which was a treat for the kids. We got home around 7:30 p.m. and the kids are all off doing their own things. Bill is out organizing in the garage, which seems to be a never-ending project. I'm going to tinker a bit on the computer and then lay down and watch some TV.
The computer is right next to the fireplace and it feels nice and warm right now. The temperature was in the low 50s on our way home.
More tomorrow...
Much Love,
Michele
Friday, November 27, 2009
DAY AFTER THANKSGIVING !!!
Hi Friends!
Today was a busy day. Bill has really turned into me, and he left the house at 2:30 a.m. to go Christmas shopping at Best Buy. I can't say what he got, because my older children often read this blog. But he got some good deals and was happy, but very cold and tired when he arrived home around 7 a.m.
I woke the kids up at 10 a.m. as the housecleaners were coming, and they needed to pick up in their rooms, so that it would be possible for the cleaners to dust, vacuum, etc. -- you know, clear a path was needed:-) We got that and all of our chores accomplished this morning, and it is nice to have a clean house again even though it probably won't last long.
After the cleaners left and we had lunch, Bill and I left the kids at home while we did some errands. We needed to return overdue library books, go to Walgreen's, and I was desperate to get my haircut. Finding someplace that was open for haircuts today was a challenge, but I got it done. I was able to get my hair cut into a cute bob, so I'm thrilled to have enough hair to do that again. I didn't seem to lose too much from my last two rounds of Rituxan. Anyway, you can see pictures of my new haircut above. It is basically the way I used to wear my hair (pre-lupus) only I have managed to grow out my bangs.
The picture of me wearing the mask is to demonstrate what I look like when I go outside. I am feeling better, and I want to start exercising again, but I'm not taking any chances. So, after errands today when I got home -- I took Molly, Nate, and Isaac to the park. I wore the mask while I did my walking. And I bought a box of 50, so I will continue to do that to hopefully keep the pneumonia away.
I also included pictures of my birthday rings. The heart one is the one Isaac bought me. It's pink and quite lovely. And the other one is a family ring that Bill gave me. It has all of our birthstones and names listed on the ring.
Right now Bill just woke up from a nap, and he is going to make dinner. I think I'll see if he wants help.
Much Love,
Michele
HAPPY THANKSGIVING :-)
Hello Everyone,
Happy Thanksgiving! I hope you all had a wonderful day. We had a relaxing and laid-back holiday. I am finally starting to feel better with my pneumonia. I had my last IV yesterday, and so hopefully the bad stomach side-effects (strong IV antibiotics are hard on your systems) will go away soon. My cough is completely now, and I'm just feeling very run-down. But Dr. Cohen called to check on me, and he said it can take up to 6 months to completely recover from pneumonia, especially with my blood counts being off due to the chemo.
Our family chef, Bill, decided that we'd go to HomeTown Buffet for dinner today. That was very nice. We got a lot of good food (including turkey and ham) for a very low price, and we didn't have to do any work or mess up our kitchen. Everyone was very happy, and we had a good time!
I thought you might enjoy the pictures we took today. As you can see I'm very puffy again. That's due to all the high-dose steroids I've been on recently. Kind of depressing, but hopefully we can start to taper down the steroids soon.
Much Love,
Michele
Happy Thanksgiving! I hope you all had a wonderful day. We had a relaxing and laid-back holiday. I am finally starting to feel better with my pneumonia. I had my last IV yesterday, and so hopefully the bad stomach side-effects (strong IV antibiotics are hard on your systems) will go away soon. My cough is completely now, and I'm just feeling very run-down. But Dr. Cohen called to check on me, and he said it can take up to 6 months to completely recover from pneumonia, especially with my blood counts being off due to the chemo.
Our family chef, Bill, decided that we'd go to HomeTown Buffet for dinner today. That was very nice. We got a lot of good food (including turkey and ham) for a very low price, and we didn't have to do any work or mess up our kitchen. Everyone was very happy, and we had a good time!
I thought you might enjoy the pictures we took today. As you can see I'm very puffy again. That's due to all the high-dose steroids I've been on recently. Kind of depressing, but hopefully we can start to taper down the steroids soon.
Much Love,
Michele
Monday, November 23, 2009
BEGINNINGS OF A THANKFUL WEEK :-)
Hi Friends!
I don't want to jinx myself, but I think the pneumonia may be going away. I hope...I hope...I hope! I am on Day 13 of IV antibiotics, but this has been a very resistant infection. And, of course, since we've killed my immune system (that seemed like a good idea because lupus is caused by an over-active immune system!) I am unable to fight even the simplest germ off!
But today, Bill actually allowed me to drive the truck. I haven't done that for at least a month. Mostly, because I take a lot of pain medications. (narcotics) So, I had to suck it up today and I took Molly, Nate, and Isaac to Simi Valley for dental appointments. I hadn't made an appointment for Cameron, because I didn't realize he had this whole week off of school. So, he got to stay home and enjoy the quiet.
We made it to the dentist by 10 a.m., and we discovered all the kids have cavities. Molly and Isaac each have 3, and Nathaniel has 7. So, it'll probably take the next 6 months to get all of the fillings done. At first, I was really upset -- but then I considered how much I've been sick and/or in the hospital over the last 6 months. And I decided tooth brushing probably wasn't a priority at our house. Oh well! We'll get the kids fixed up and do better next time.
We met Annie at Carl's Jr. for lunch. It was nice to see her as we hadn't seen her for quite awhile. I have honestly been home-bound for the last few weeks.
I had to be back home to Oxnard by 2:30 p.m. because my nurse was coming to change the dressing on my PICC line and draw blood from it. That is done weekly. She arrived early and was waiting on my front porch at 2 when I got home.
After my Simi outing and then the nurse, I needed a nap. And then the kids and I did some housework and just hung around the house. I even had enough energy to Saran wrap (can't get wet!) my PICC line and take a bath. After that Bill came home and made dinner. And we're just having a quiet evening.
Much Love,
Michele
------------------------------
THINGS I'M THANKFUL FOR...
1. I'm not in the hospital.
2. My warm fireplace on a cold night.
3. My dear husband cooking dinner every night and grocery shopping weekly.
4. Itty Bitty the crazy kitty.
5. Cameron being off of school this week.
6. Molly's fashion sense.
7. Nate's energy.
8. A heart ring that Isaac spent $25 of his own allowance money on for my birthday.
9. My PICC line -- take all the blood you want, it doesn't hurt!
10. I now have enough hair that I'm considering a haircut and a real hairstyle!
I don't want to jinx myself, but I think the pneumonia may be going away. I hope...I hope...I hope! I am on Day 13 of IV antibiotics, but this has been a very resistant infection. And, of course, since we've killed my immune system (that seemed like a good idea because lupus is caused by an over-active immune system!) I am unable to fight even the simplest germ off!
But today, Bill actually allowed me to drive the truck. I haven't done that for at least a month. Mostly, because I take a lot of pain medications. (narcotics) So, I had to suck it up today and I took Molly, Nate, and Isaac to Simi Valley for dental appointments. I hadn't made an appointment for Cameron, because I didn't realize he had this whole week off of school. So, he got to stay home and enjoy the quiet.
We made it to the dentist by 10 a.m., and we discovered all the kids have cavities. Molly and Isaac each have 3, and Nathaniel has 7. So, it'll probably take the next 6 months to get all of the fillings done. At first, I was really upset -- but then I considered how much I've been sick and/or in the hospital over the last 6 months. And I decided tooth brushing probably wasn't a priority at our house. Oh well! We'll get the kids fixed up and do better next time.
We met Annie at Carl's Jr. for lunch. It was nice to see her as we hadn't seen her for quite awhile. I have honestly been home-bound for the last few weeks.
I had to be back home to Oxnard by 2:30 p.m. because my nurse was coming to change the dressing on my PICC line and draw blood from it. That is done weekly. She arrived early and was waiting on my front porch at 2 when I got home.
After my Simi outing and then the nurse, I needed a nap. And then the kids and I did some housework and just hung around the house. I even had enough energy to Saran wrap (can't get wet!) my PICC line and take a bath. After that Bill came home and made dinner. And we're just having a quiet evening.
Much Love,
Michele
------------------------------
THINGS I'M THANKFUL FOR...
1. I'm not in the hospital.
2. My warm fireplace on a cold night.
3. My dear husband cooking dinner every night and grocery shopping weekly.
4. Itty Bitty the crazy kitty.
5. Cameron being off of school this week.
6. Molly's fashion sense.
7. Nate's energy.
8. A heart ring that Isaac spent $25 of his own allowance money on for my birthday.
9. My PICC line -- take all the blood you want, it doesn't hurt!
10. I now have enough hair that I'm considering a haircut and a real hairstyle!
Saturday, November 21, 2009
SANDY SATURDAY!!!
Hi Friends!
Yesterday we completed our first full week of homeschooling, so that was cause for celebration. It's been a slow start this year with me being sick so frequently. In the evening when Bill got home, we went to Toppers for pizza and then to Dairy Queen for dessert. It was nice to get out, but my IV antibiotics are very powerful and making me somewhat sick to my stomach. So, I didn't get to enjoy it as much as everyone else.
Today Bill took Molly, Nate, and Isaac to the beach. There are some sand dunes that they love climbing up. We didn't think it would be a good idea for me to go with my pneumonia. So, Cam and I are just hanging out at home. He didn't want to go either. He's pretty funny, though. I think Bill told him to keep a close eye on me, because every few minutes he asks whether I'm OK or if I need something. But mostly we're just enjoying the quiet. I just did a breathing treatment, took a bath, and changed into some clean PJs.
Cameron is off of school for the whole next week for Thanksgiving. The home-schooled kids are now jealous, because I told them we need to do school Monday-Wednesday. Cameron says he'll help me, and I'm hoping to feel better and to be able to do some field trips. We'll see.
For now, I am going to go lay back down until the wild ones return home!
Much Love,
Michele
Yesterday we completed our first full week of homeschooling, so that was cause for celebration. It's been a slow start this year with me being sick so frequently. In the evening when Bill got home, we went to Toppers for pizza and then to Dairy Queen for dessert. It was nice to get out, but my IV antibiotics are very powerful and making me somewhat sick to my stomach. So, I didn't get to enjoy it as much as everyone else.
Today Bill took Molly, Nate, and Isaac to the beach. There are some sand dunes that they love climbing up. We didn't think it would be a good idea for me to go with my pneumonia. So, Cam and I are just hanging out at home. He didn't want to go either. He's pretty funny, though. I think Bill told him to keep a close eye on me, because every few minutes he asks whether I'm OK or if I need something. But mostly we're just enjoying the quiet. I just did a breathing treatment, took a bath, and changed into some clean PJs.
Cameron is off of school for the whole next week for Thanksgiving. The home-schooled kids are now jealous, because I told them we need to do school Monday-Wednesday. Cameron says he'll help me, and I'm hoping to feel better and to be able to do some field trips. We'll see.
For now, I am going to go lay back down until the wild ones return home!
Much Love,
Michele
Friday, November 20, 2009
PNEUMONIA THAT WON'T GO AWAY :-(
Hi Friends!
Well, I went back to see Dr. Nathan yesterday. He's my infectious disease specialist. The pneumonia, of course, was resistant to the antibiotics and my compromised immune system can't seem to fight it. So -- it's still there. And I'm still hacking and having trouble breathing. So, I am now trying increased Prednisone, a new inhaler, Albuterol treatments on my home nebulizer every 6 hours, and a new IV antibiotic. This antibiotic takes 30 minutes to run each day, and Bill is able to run the IV right into my PICC line. It's not quite as easy as the previous antibiotic which took 5-10 minutes and was done with a syringe. But Bill makes a good nurse and the kids were quite impressed when the Home Health Care people delivered me an IV pole to use. Fun, fun!
I need to go to bed. But I just wanted to update you all on what's going on. Please pray that I get rid of the pneumonia in the next 7 days, because I'm afraid that I'll end up back in the hospital if I don't kick this soon!
Much Love,
Michele
P.S. -- I am starting to get hospital bills from the last stay. Guess how much my new chemo costs? The Rituxan was $37,000 per round. Thank goodness we've reached our catastrophic cap for the year. We'll be sad when the New Year comes.
Well, I went back to see Dr. Nathan yesterday. He's my infectious disease specialist. The pneumonia, of course, was resistant to the antibiotics and my compromised immune system can't seem to fight it. So -- it's still there. And I'm still hacking and having trouble breathing. So, I am now trying increased Prednisone, a new inhaler, Albuterol treatments on my home nebulizer every 6 hours, and a new IV antibiotic. This antibiotic takes 30 minutes to run each day, and Bill is able to run the IV right into my PICC line. It's not quite as easy as the previous antibiotic which took 5-10 minutes and was done with a syringe. But Bill makes a good nurse and the kids were quite impressed when the Home Health Care people delivered me an IV pole to use. Fun, fun!
I need to go to bed. But I just wanted to update you all on what's going on. Please pray that I get rid of the pneumonia in the next 7 days, because I'm afraid that I'll end up back in the hospital if I don't kick this soon!
Much Love,
Michele
P.S. -- I am starting to get hospital bills from the last stay. Guess how much my new chemo costs? The Rituxan was $37,000 per round. Thank goodness we've reached our catastrophic cap for the year. We'll be sad when the New Year comes.
Tuesday, November 17, 2009
HOPING THE PNEUMONIA IS GONE!!!
Hi Friends!
Tonight Bill will be giving me my last dose of IV antibiotics for the pneumonia. Then tomorrow I will go and see Dr. Nathan (the infectious disease doctor) to see if the pneumonia is gone or if I need further treatment. I am feeling better, but I'm not sure if it's completely gone. I still have a cough and my chest is not feeling completely normal yet.
But at least, I have been feeling up to home-schooling again. This weekend Bill picked us up some new sports equipment -- a soccer ball, a basketball, and tennis racquets with balls. So, we've been having a lot of fun with PE. Bill just got home from work and is making dinner. I am no longer allowed to cook or clean. I am allowed to homeschool when I feel up to it, but other than that -- I am just supposed to focus on getting better.
I'll let you know how my doctor's appointment goes tomorrow.
Much Love,
Michele
Tonight Bill will be giving me my last dose of IV antibiotics for the pneumonia. Then tomorrow I will go and see Dr. Nathan (the infectious disease doctor) to see if the pneumonia is gone or if I need further treatment. I am feeling better, but I'm not sure if it's completely gone. I still have a cough and my chest is not feeling completely normal yet.
But at least, I have been feeling up to home-schooling again. This weekend Bill picked us up some new sports equipment -- a soccer ball, a basketball, and tennis racquets with balls. So, we've been having a lot of fun with PE. Bill just got home from work and is making dinner. I am no longer allowed to cook or clean. I am allowed to homeschool when I feel up to it, but other than that -- I am just supposed to focus on getting better.
I'll let you know how my doctor's appointment goes tomorrow.
Much Love,
Michele
Friday, November 13, 2009
PNEUMONIA AGAIN :-(
Hi Friends!
Sorry -- again it's been awhile. But I have a good excuse. I woke up on Monday with a horrible cough and chest pain. On Tuesday, I went to see Dr. Cohen and had a chest Xray to verify that I once again have pneumonia. He sent me to see Dr. Nathan -- the infectious disease doctor who would decide what to do with me. I am getting antibiotics orally and by IV for the next 7 days. The home health care nurse was able to train Bill to give the IV antibiotics through my PICC line. So, that was convenient. Hopefully, this course of treatment will work, because I feel really crummy.
And, of course, yesterday was my 39th birthday. My family treated me like a princess even though I spent most of the day in bed. I received 2 beautiful rings. One is heart-shaped from Isaac, and one is a mother's ring with all of our birthstones on it from the rest of the family. I also received a pretty new outfit -- brown pants, rust-colored shirt and leather jacket. And Bill's parents and my parents both sent me surprises! So, thanks to everyone!
Much Love,
Michele
Sorry -- again it's been awhile. But I have a good excuse. I woke up on Monday with a horrible cough and chest pain. On Tuesday, I went to see Dr. Cohen and had a chest Xray to verify that I once again have pneumonia. He sent me to see Dr. Nathan -- the infectious disease doctor who would decide what to do with me. I am getting antibiotics orally and by IV for the next 7 days. The home health care nurse was able to train Bill to give the IV antibiotics through my PICC line. So, that was convenient. Hopefully, this course of treatment will work, because I feel really crummy.
And, of course, yesterday was my 39th birthday. My family treated me like a princess even though I spent most of the day in bed. I received 2 beautiful rings. One is heart-shaped from Isaac, and one is a mother's ring with all of our birthstones on it from the rest of the family. I also received a pretty new outfit -- brown pants, rust-colored shirt and leather jacket. And Bill's parents and my parents both sent me surprises! So, thanks to everyone!
Much Love,
Michele
Sunday, November 8, 2009
FAMILY WEEKEND...
Hi Friends,
I spent the weekend around home and since I'm feeling better -- I just tried not to push it too hard and make myself sick again. I have a bit of a cold going -- so I need to be careful with my lack of immune system. Usually my tendency is to do too much as soon as I start to feel better. So, I need to be careful.
Bill spent the weekend doing lots of activities with the kids -- taking them to the playgrounds, playing fussball, grilling out for dinner, etc. He also has been working on unpacking and organizing our garage. As I'm sure you can imagine -- it wasn't looking very good. After moving in, I spent the next 26 days in the hospital, so it's not like Bill had a lot of time to do this. Hopefully, this is a step into normalcy for us.
The kids and I also rented Aliens in the Attic and watched it together. We enjoyed it. And tonight we had chocolate chip pancakes with sausage for our traditional Sunday breakfast-for-dinner. Bill has taken over cooking, which is very nice for me.
I'll attempt to blog more tomorrow.
Much Love,
Michele
I spent the weekend around home and since I'm feeling better -- I just tried not to push it too hard and make myself sick again. I have a bit of a cold going -- so I need to be careful with my lack of immune system. Usually my tendency is to do too much as soon as I start to feel better. So, I need to be careful.
Bill spent the weekend doing lots of activities with the kids -- taking them to the playgrounds, playing fussball, grilling out for dinner, etc. He also has been working on unpacking and organizing our garage. As I'm sure you can imagine -- it wasn't looking very good. After moving in, I spent the next 26 days in the hospital, so it's not like Bill had a lot of time to do this. Hopefully, this is a step into normalcy for us.
The kids and I also rented Aliens in the Attic and watched it together. We enjoyed it. And tonight we had chocolate chip pancakes with sausage for our traditional Sunday breakfast-for-dinner. Bill has taken over cooking, which is very nice for me.
I'll attempt to blog more tomorrow.
Much Love,
Michele
Friday, November 6, 2009
SORRY, IT'S BEEN A WHILE ...
Hi Friends,
Sorry it's been so long since I've blogged .. but after a month in the hospital (where we kept finding more and more wrong with me -- an ulcer, a bowel blockage, heart issues, etc.), a 3 day course of high-dose IV steroids and 2 very long chemo sessions (think 6 hours each), my body has just been wiped out. I started the week sleeping almost constantly and then moved on to puking almost constantly. Trust me, the sleeping part is better. I know that lots of you were calling, e-mailing, etc, -- but my my strength was gone. I have basically been in bed since the hospital stay 2 weeks ago. I had Bill's Mom out to to help , and then Lisa and her girls (Claire and Sarah) came for a long weekend, so the company was nice and they were a big help. I know that the kids and Bill really enjoyed having them here, but sometimes it was sad for me because I felt like I was sleeping through all the fun. Lisa says she has some cute pictures of Halloween, so I'll definitely post then when I get them. The kids all got to trick-or-treat in our new neighborhood, which is very child-friendly.
Bill was in China Lake on business from Tuesday-Thursday of this week. He came back this afternoon and I'm definitely glad he's back. There was talk of him staying another day for more business, but I really needed some TLC. The kids were doing their best -- but they are still just kids. Although Cam was really sad to miss out on 3 days of school and help out with the homeschoolers! Just kiding, of course he was thrilled.
I'll try to get back to blogging again more frequently. Please pray for my health -- specifically that my throwing up would stop, and that we could get my blood sugar levels under control. They are WAY too high.
Love,
Michele
Sorry it's been so long since I've blogged .. but after a month in the hospital (where we kept finding more and more wrong with me -- an ulcer, a bowel blockage, heart issues, etc.), a 3 day course of high-dose IV steroids and 2 very long chemo sessions (think 6 hours each), my body has just been wiped out. I started the week sleeping almost constantly and then moved on to puking almost constantly. Trust me, the sleeping part is better. I know that lots of you were calling, e-mailing, etc, -- but my my strength was gone. I have basically been in bed since the hospital stay 2 weeks ago. I had Bill's Mom out to to help , and then Lisa and her girls (Claire and Sarah) came for a long weekend, so the company was nice and they were a big help. I know that the kids and Bill really enjoyed having them here, but sometimes it was sad for me because I felt like I was sleeping through all the fun. Lisa says she has some cute pictures of Halloween, so I'll definitely post then when I get them. The kids all got to trick-or-treat in our new neighborhood, which is very child-friendly.
Bill was in China Lake on business from Tuesday-Thursday of this week. He came back this afternoon and I'm definitely glad he's back. There was talk of him staying another day for more business, but I really needed some TLC. The kids were doing their best -- but they are still just kids. Although Cam was really sad to miss out on 3 days of school and help out with the homeschoolers! Just kiding, of course he was thrilled.
I'll try to get back to blogging again more frequently. Please pray for my health -- specifically that my throwing up would stop, and that we could get my blood sugar levels under control. They are WAY too high.
Love,
Michele
Subscribe to:
Posts (Atom)
Posts
