Hi Friends!
I haven't blogged since Christmas...wow! It's been a challenging year since then with several hospital stays and lots of in-home health care. People have been asking about my recent hospital stay -- so here's the basic info.
I'm home after being hospitalized for yet another round of steroids and chemo. I just did a round of IV steroids 2 weeks ago at home. It wasn't enough. It helped a bit and I was able to walk again and resumed having feeling in my legs -- BUT 2 weeks later and my lupus headache was back and my bloodwork was all off. So, into the hospital for all the tweaking.
It was disappointing because we were all hopeful that I would get to do Benylstra -- the new lupus infusion just approved by the FDA. Turns out I am currently not a candidate as no testing was done on people with lupus affecting their brains. (It's considered unethical to do testing on people in my situation.) So, instead I'm on my 5th round of Rituxan. The problem is I'm only allowed to do 8 rounds before it's considered too dangerous for me. I am trying to not think about what's next -- they may let me do more Rituxan, they may let me try Benylstra, or there's been talk of a stem cell transplant?? For now I just have to think about today. And know that this round of chemo while it pushes the lupus back -- will likely only last 3 months again.
I'm trying to have a good attitude, but after 3 years of fighting for that elusive remission -- I am tired. Bill is at the grocery store. The kids are hopefully doing their Saturday chores. And I'm in bed, sipping soda. My goal for today is a bath and clean jammies. I think I'd feel better after that. I'm also hoping to be able to get back to daily Bible reading.
Much Love,
Michele
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Saturday, April 9, 2011
Friday, December 24, 2010
MERRY CHRISTMAS!!! A Christmas Newsletter by Blog...
Happy Holidays!!!
I sent out some Christmas cards and e-cards this year. Oddly, this is the first year of the past three (since I've been sick) that I've felt the Christmas spirit. I actually decorated the house with much help of the kids. I made peppermint brownies for Cam and Molly's teachers and with the help of a Secret Santa, I even bought some Christmas gifts for my children. I haven't blogged since Thanksgiving, so I thought I'd do a little Christmas newsletter in my blog today.
2010 has been a year that allowed us to grow stronger both as a family and in our faith. We are closer to each other and closer to God. There have been many challenges, but we consistently see how God can bring the good out of every bad situation. And there have been so many blessings! Most of all, we continue to live in the now and focus on the journey one step at a time rather than worrying about the destination.
Our youngest, Isaac John, is now 8 years old and in 2nd grade. He is a sweet and caring little boy. He is active and fun-loving and enjoys skateboarding and biking, climbing trees, and getting dirty. He is currently homeschooling with Mom and Nate and is quite intelligent, learning how to read and do math in the setting of the real world. He spends a lot of time with our two cats, Itty Bitty Kitty and Bo Bo, because he is a real animal lover.
Nathaniel is 12 years old, and he is in 6th grade. He continues to homeschool for the rest of this year, although he plans to go to public middle school next year. He is the typical almost-teenager, listening to music and talking on his cell phone. He enjoys skateboarding more than anything and loves the local skatepark. He is also really into fashion and the skateboarder look. He is active, fun-loving, and a jokester. Recently he has been learning card tricks and doing magic shows for the entire family.
Molly is 14 years old and a freshman at Channel Islands High School. She has done a great job of adjusting to high school and received mostly A+ grades, with just a few B's. We are very proud of her. She enjoys reading, music, FaceBook and other computer activities. And she continues to be a huge help at our house. As the only girl, she has those maternal instincts and can often be found cooking, cleaning, or doing the laundry without being asked.
Cameron is almost 18 years old and a senior at Channel Island High School. He is in the Marine Science Academy at his school and his biggest interests are animals and the environment. After high school, he intends to go to Moorpark College for their Exotic Animal Management Training Program. After 2 years, he will transfer to a California state school to get his Bachelor's Degree in Animal Studies. We are sure that he will be very successful in his future endeavors. He also continues to be a huge help at home when Mom is sick.
I have learned that being a Mom is not defined by how much you can do. I now view a Mom as someone whose primary job is to love, care, and pray for her children. No matter how sick I am, I can always do those things. And I am blessed with plenty of help to do household chores, driving, and other things that I am not physically able to do. As far as the lupus goes, we are still working to get it into remission. I am currently doing 3 types of aggressive chemo -- 1 daily pill, 1 weekly shot, and an infusion of chemo + steroids every 4 months. I am on round 4 of round 8. Hopefully, we will see some improvement. If not, we may need to consider a stem cell transplant. But I choose to focus on the now, and trust God with the plan. I have had fewer hospital stays this year with the utilization of home health care nurses.
I have also been blessed this year by a new laptop that Bill gave me for my 40th Birthday. It enables me to reconnect via FB and e-mail with many childhood friends -- and it just makes my world seem bigger. I find that focusing on God and others makes my problems seem much more manageable. And with a team of 10 doctors and such supportive family and friends -- I don't need to worry about much.
Bill continues with his job at Point Mugu. Now that we are living in Oxnard, he is much closer to work and is able to take Cameron and Molly to and from school in the morning and afternoon. He is also able to stop at home during the day if help is needed, which is especially helpful since Michele is now unable to drive.
Bill also stays very busy (but in a fun way!) on the 40 acres of land we bought on Yerba Buena Rd. We spend many weekends out there, enjoying the quiet and beauty of nature. We have an RV that we can stay in while out there. So far, Bill has cleared a road using a huge Bobcat up to the site where we plan to put our house. Now it is time to work on the permits and paperwork for electricity, and a well, and all the other things we will need.
And of course, Bill stays awfully busy being Mr. Mom and Michele's primary caretaker -- which can be a challenge considering that (as some of you may know) he has his own health problems to contend with. But he does it with a very generous, kind, and loving nature...
This Christmas we are happy to be together to celebrate our Savior's birth. We take nothing for granted after several hospitalizations this year. We will be going to church this evening at Calvary Chapel in Oxnard. After a bit of searching, we have found a new church here in Oxnard that seems to fit our family. Tomorrow morning we will open gifts and have our traditional family feast. Bill is planning the traditional ham and fixings + beer-can chicken, a new recipe -- which seems fitting for our family.
We have some big plans for the year of 2011. Cameron will be graduating high school and starting college. Also, in May Bill and Michele will be celebrating their 20th wedding anniversary. We intend to have a very small vow renewal ceremony out on our land to honor the day. So, let us know if you'll be in California around May 25th. Also, in the summer, our church does baptisms in the ocean. As only Bill has been baptized by immersion, Michele and the kids are planning to be baptized in the ocean. And Bill will be able to help. How cool is that!
I think I'll end there...life is good. I am happy. Our family is abundantly blessed, and our challenges make us stronger. We love God and we thank Him for you, all of our friends and our families. We wish you joy, peace, happiness, faith, hope, and most of all love for this holiday season. We pray that you will live 2011 on purpose!!!
Happy Holidays and Best Wishes, With Much Love,
The Blands
Bill and Michele
Cameron, Molly, Nathaniel, and Isaac
I sent out some Christmas cards and e-cards this year. Oddly, this is the first year of the past three (since I've been sick) that I've felt the Christmas spirit. I actually decorated the house with much help of the kids. I made peppermint brownies for Cam and Molly's teachers and with the help of a Secret Santa, I even bought some Christmas gifts for my children. I haven't blogged since Thanksgiving, so I thought I'd do a little Christmas newsletter in my blog today.
2010 has been a year that allowed us to grow stronger both as a family and in our faith. We are closer to each other and closer to God. There have been many challenges, but we consistently see how God can bring the good out of every bad situation. And there have been so many blessings! Most of all, we continue to live in the now and focus on the journey one step at a time rather than worrying about the destination.
Our youngest, Isaac John, is now 8 years old and in 2nd grade. He is a sweet and caring little boy. He is active and fun-loving and enjoys skateboarding and biking, climbing trees, and getting dirty. He is currently homeschooling with Mom and Nate and is quite intelligent, learning how to read and do math in the setting of the real world. He spends a lot of time with our two cats, Itty Bitty Kitty and Bo Bo, because he is a real animal lover.
Nathaniel is 12 years old, and he is in 6th grade. He continues to homeschool for the rest of this year, although he plans to go to public middle school next year. He is the typical almost-teenager, listening to music and talking on his cell phone. He enjoys skateboarding more than anything and loves the local skatepark. He is also really into fashion and the skateboarder look. He is active, fun-loving, and a jokester. Recently he has been learning card tricks and doing magic shows for the entire family.
Molly is 14 years old and a freshman at Channel Islands High School. She has done a great job of adjusting to high school and received mostly A+ grades, with just a few B's. We are very proud of her. She enjoys reading, music, FaceBook and other computer activities. And she continues to be a huge help at our house. As the only girl, she has those maternal instincts and can often be found cooking, cleaning, or doing the laundry without being asked.
Cameron is almost 18 years old and a senior at Channel Island High School. He is in the Marine Science Academy at his school and his biggest interests are animals and the environment. After high school, he intends to go to Moorpark College for their Exotic Animal Management Training Program. After 2 years, he will transfer to a California state school to get his Bachelor's Degree in Animal Studies. We are sure that he will be very successful in his future endeavors. He also continues to be a huge help at home when Mom is sick.
I have learned that being a Mom is not defined by how much you can do. I now view a Mom as someone whose primary job is to love, care, and pray for her children. No matter how sick I am, I can always do those things. And I am blessed with plenty of help to do household chores, driving, and other things that I am not physically able to do. As far as the lupus goes, we are still working to get it into remission. I am currently doing 3 types of aggressive chemo -- 1 daily pill, 1 weekly shot, and an infusion of chemo + steroids every 4 months. I am on round 4 of round 8. Hopefully, we will see some improvement. If not, we may need to consider a stem cell transplant. But I choose to focus on the now, and trust God with the plan. I have had fewer hospital stays this year with the utilization of home health care nurses.
I have also been blessed this year by a new laptop that Bill gave me for my 40th Birthday. It enables me to reconnect via FB and e-mail with many childhood friends -- and it just makes my world seem bigger. I find that focusing on God and others makes my problems seem much more manageable. And with a team of 10 doctors and such supportive family and friends -- I don't need to worry about much.
Bill continues with his job at Point Mugu. Now that we are living in Oxnard, he is much closer to work and is able to take Cameron and Molly to and from school in the morning and afternoon. He is also able to stop at home during the day if help is needed, which is especially helpful since Michele is now unable to drive.
Bill also stays very busy (but in a fun way!) on the 40 acres of land we bought on Yerba Buena Rd. We spend many weekends out there, enjoying the quiet and beauty of nature. We have an RV that we can stay in while out there. So far, Bill has cleared a road using a huge Bobcat up to the site where we plan to put our house. Now it is time to work on the permits and paperwork for electricity, and a well, and all the other things we will need.
And of course, Bill stays awfully busy being Mr. Mom and Michele's primary caretaker -- which can be a challenge considering that (as some of you may know) he has his own health problems to contend with. But he does it with a very generous, kind, and loving nature...
This Christmas we are happy to be together to celebrate our Savior's birth. We take nothing for granted after several hospitalizations this year. We will be going to church this evening at Calvary Chapel in Oxnard. After a bit of searching, we have found a new church here in Oxnard that seems to fit our family. Tomorrow morning we will open gifts and have our traditional family feast. Bill is planning the traditional ham and fixings + beer-can chicken, a new recipe -- which seems fitting for our family.
We have some big plans for the year of 2011. Cameron will be graduating high school and starting college. Also, in May Bill and Michele will be celebrating their 20th wedding anniversary. We intend to have a very small vow renewal ceremony out on our land to honor the day. So, let us know if you'll be in California around May 25th. Also, in the summer, our church does baptisms in the ocean. As only Bill has been baptized by immersion, Michele and the kids are planning to be baptized in the ocean. And Bill will be able to help. How cool is that!
I think I'll end there...life is good. I am happy. Our family is abundantly blessed, and our challenges make us stronger. We love God and we thank Him for you, all of our friends and our families. We wish you joy, peace, happiness, faith, hope, and most of all love for this holiday season. We pray that you will live 2011 on purpose!!!
Happy Holidays and Best Wishes, With Much Love,
The Blands
Bill and Michele
Cameron, Molly, Nathaniel, and Isaac
Friday, November 26, 2010
HAPPY THANKSGIVING, 2010:-)
Hi Friends,
Sorry...I didn't realize I stopped blogging this week. I've been recovering from the chemo and IV steroids. They seem to be helping, but they also come with side effects of lethargy, pain, and vomiting. So, I've been recovering VERY slowly as recommended by my doctors. And I'm still in bed a lot of the time. When not in bed, I seem to spend the rest of my time working with the doctors on my team. I currently have 9 doctors on my "dream team." Since lupus is a systemic illness (that is, it affects many of your body's systems), I need a specialist for every system currently being affected. So, basically -- my excuse for not blogging was I spent the whole week doing these three things. 1. Seeing doctors. 2. Having testing done that was ordered by those doctors. and 3. Resting/recovering from the lupus flare I am currently in.
On Wednesday, I voluntarily surrendered my driver's license to the DMV. I felt it was the morally responsible thing to do after having a seizure while driving. The neurologist will be working with me to determine the cause/treatment course given what happened. Meanwhile, I am under orders to take all medication as directed and control my pain well. I take 18 meds at the current time and several of them if missed could bring on a seizure. Also, when my pain is really bad, my heartrate and blood pressure skyrocket and that as well could cause a seizure. So, I know what I need to do on my end, and I have Bill's full support.
Today was Thanksgiving. I hope you all had a wonderful day...a day filled with the love of friends and family and of course, lots of good food. I'm not up to much activity yet -- but Thanksgiving was the perfect holiday for me. That is because it only involves 3 things -- being thankful (which I am), and eating and napping (both of which I'm a pro at!). Bill has a lot on his plate figuratively, and we decided not to add cooking to it today. So we elected to go out for dinner at the HomeTown Buffet here in Oxnard. We've done that in the past, and it's always been a good experience.
So, we slept in today. This morning we all kind of dawdled around the house and eventually did our daily chores. At about 3 p.m. we went out for dinner. It was exciting because it was the first time all 6 of us drove as a family in our replacement truck. We used the money paid for our totalled Ford Expedition, and we replaced it with a 2000 GMC Sierra 2500 Pick Up truck. It has the double cab, so it seats 6. It is also a 4x4 with a towing package, so that will come in handy out on the land. It's beige in color, which wouldn't have been my first choice -- but at this point, I'm just glad it's not white because it seemed that most of the vehicles for sale around here were white.
Anyway, our Thanksgiving dinner was very nice. We ate and we ate and we ate. Great food, great desserts. They even have slurpees there now, which was an unexpected treat for this 7-11 baby! I took lots of pictures of our Thanksgiving Day and meal and posted them on FB if you are interested.
For me, dinner was really good. And I ate, and I ate -- until all of a sudden I felt the chemo tummy and then it was not good anymore. I ended up going outside with Nate to get some fresh air until everyone else finished up. When we got home, I vowed to never eat again, and then I lay down and took a 2 1/2 hour nap. Since then, I've just been hanging out in my room, playing around on my laptop. Yesterday, Bill let me order a beautiful pink alligator carrying case for it as well as a butterfly skin to decorate it. So, I can't wait for it to come this week.
Isaac and Bill had a lot of energy today. They rotated the tires on the new truck and did some routine maintenance on it. They also brought in the Christmas decorations and started getting the house ready for Christmas. Isaac brought me a Santa hat to wear -- but I just wore it in my bed as I didn't really have the energy to help.
When we left the HomeTown Buffet today, we drove past Best Buy. It was about 4:30 p.m. and people were already camping out in their tents in a line waiting for Black Friday tomorrow morning. Bill and I laughed and decided there is nothing we want bad enough that we'd be willing to sit all night out in the cold for. I am planning to go to Walgreen's with him tomorrow -- but that will be it. He has some RXs to pick up there, and I'm in need of a new perfume. I figure there may be some good sales there tomorrow.
Also, I am very excited because one of my BFF's, Shirlene, is coming to visit tomorrow. I haven't seen her for several weeks. She's the one who had Nate and Isaac stay with her and her family for almost 2 weeks during my last hospital stay + car crash afterwards. Anyway, I am thrilled to get to see her as well as her son, Brandon, and his girlfriend, Margaret. I miss them all so much.
On that note, it's late and I should go to bed. They are driving here from PalmDale, so I'm not sure when they'll be arriving.
With thanksgiving for our friendship and
Much Love,
Shel
_______________________________________________________________________
PostScripts for Thanksgiving:
"For flowers that bloom about our feet;
For tender grass, so fresh, so sweet;
For song of bird, and hum of bee;
For all things fair we hear or see,
Father in Heaven, we thank Thee!"
--Ralph Waldo Emerson
-------------------------------------
"Hem your blessings with thankfulness so they don't unravel." -Author Unknown
--------------------------------------
What the Bland Family is thankful for:
(A family tradition at the Thanksgiving dinner...)
Isaac: "eating this food and having dinner at the HomeTown Buffet."
Nate: "getting an XBox for my birthday."
Molly: "my family"
Cameron: "My life is hectic, but I am thankful because I know that many people have it worse."
Shel: "thankful that I am still here...that I lived through my fiery car crash. I recognize that God provided me with angels to get me out. There is no earthly reason I should be alive as my car burned to the ground within minutes. It was a miraculous exxperience and I believe evidence that I have a purpose-filled life that I am not done with yet."
Bill: "also thankful for Michele's life and that we were able to find a good replacement vehicle with the insurance money."
Sorry...I didn't realize I stopped blogging this week. I've been recovering from the chemo and IV steroids. They seem to be helping, but they also come with side effects of lethargy, pain, and vomiting. So, I've been recovering VERY slowly as recommended by my doctors. And I'm still in bed a lot of the time. When not in bed, I seem to spend the rest of my time working with the doctors on my team. I currently have 9 doctors on my "dream team." Since lupus is a systemic illness (that is, it affects many of your body's systems), I need a specialist for every system currently being affected. So, basically -- my excuse for not blogging was I spent the whole week doing these three things. 1. Seeing doctors. 2. Having testing done that was ordered by those doctors. and 3. Resting/recovering from the lupus flare I am currently in.
On Wednesday, I voluntarily surrendered my driver's license to the DMV. I felt it was the morally responsible thing to do after having a seizure while driving. The neurologist will be working with me to determine the cause/treatment course given what happened. Meanwhile, I am under orders to take all medication as directed and control my pain well. I take 18 meds at the current time and several of them if missed could bring on a seizure. Also, when my pain is really bad, my heartrate and blood pressure skyrocket and that as well could cause a seizure. So, I know what I need to do on my end, and I have Bill's full support.
Today was Thanksgiving. I hope you all had a wonderful day...a day filled with the love of friends and family and of course, lots of good food. I'm not up to much activity yet -- but Thanksgiving was the perfect holiday for me. That is because it only involves 3 things -- being thankful (which I am), and eating and napping (both of which I'm a pro at!). Bill has a lot on his plate figuratively, and we decided not to add cooking to it today. So we elected to go out for dinner at the HomeTown Buffet here in Oxnard. We've done that in the past, and it's always been a good experience.
So, we slept in today. This morning we all kind of dawdled around the house and eventually did our daily chores. At about 3 p.m. we went out for dinner. It was exciting because it was the first time all 6 of us drove as a family in our replacement truck. We used the money paid for our totalled Ford Expedition, and we replaced it with a 2000 GMC Sierra 2500 Pick Up truck. It has the double cab, so it seats 6. It is also a 4x4 with a towing package, so that will come in handy out on the land. It's beige in color, which wouldn't have been my first choice -- but at this point, I'm just glad it's not white because it seemed that most of the vehicles for sale around here were white.
Anyway, our Thanksgiving dinner was very nice. We ate and we ate and we ate. Great food, great desserts. They even have slurpees there now, which was an unexpected treat for this 7-11 baby! I took lots of pictures of our Thanksgiving Day and meal and posted them on FB if you are interested.
For me, dinner was really good. And I ate, and I ate -- until all of a sudden I felt the chemo tummy and then it was not good anymore. I ended up going outside with Nate to get some fresh air until everyone else finished up. When we got home, I vowed to never eat again, and then I lay down and took a 2 1/2 hour nap. Since then, I've just been hanging out in my room, playing around on my laptop. Yesterday, Bill let me order a beautiful pink alligator carrying case for it as well as a butterfly skin to decorate it. So, I can't wait for it to come this week.
Isaac and Bill had a lot of energy today. They rotated the tires on the new truck and did some routine maintenance on it. They also brought in the Christmas decorations and started getting the house ready for Christmas. Isaac brought me a Santa hat to wear -- but I just wore it in my bed as I didn't really have the energy to help.
When we left the HomeTown Buffet today, we drove past Best Buy. It was about 4:30 p.m. and people were already camping out in their tents in a line waiting for Black Friday tomorrow morning. Bill and I laughed and decided there is nothing we want bad enough that we'd be willing to sit all night out in the cold for. I am planning to go to Walgreen's with him tomorrow -- but that will be it. He has some RXs to pick up there, and I'm in need of a new perfume. I figure there may be some good sales there tomorrow.
Also, I am very excited because one of my BFF's, Shirlene, is coming to visit tomorrow. I haven't seen her for several weeks. She's the one who had Nate and Isaac stay with her and her family for almost 2 weeks during my last hospital stay + car crash afterwards. Anyway, I am thrilled to get to see her as well as her son, Brandon, and his girlfriend, Margaret. I miss them all so much.
On that note, it's late and I should go to bed. They are driving here from PalmDale, so I'm not sure when they'll be arriving.
With thanksgiving for our friendship and
Much Love,
Shel
_______________________________________________________________________
PostScripts for Thanksgiving:
"For flowers that bloom about our feet;
For tender grass, so fresh, so sweet;
For song of bird, and hum of bee;
For all things fair we hear or see,
Father in Heaven, we thank Thee!"
--Ralph Waldo Emerson
-------------------------------------
"Hem your blessings with thankfulness so they don't unravel." -Author Unknown
--------------------------------------
What the Bland Family is thankful for:
(A family tradition at the Thanksgiving dinner...)
Isaac: "eating this food and having dinner at the HomeTown Buffet."
Nate: "getting an XBox for my birthday."
Molly: "my family"
Cameron: "My life is hectic, but I am thankful because I know that many people have it worse."
Shel: "thankful that I am still here...that I lived through my fiery car crash. I recognize that God provided me with angels to get me out. There is no earthly reason I should be alive as my car burned to the ground within minutes. It was a miraculous exxperience and I believe evidence that I have a purpose-filled life that I am not done with yet."
Bill: "also thankful for Michele's life and that we were able to find a good replacement vehicle with the insurance money."
Sunday, November 21, 2010
MISSION ACCOMPLISHED....
Hi Friends,
I am having some relief with my lupus headache, since I finished the 3rd round of IV Solumedrol. I'm happy -- but it's about time! I am able to go longer between pain med doses and I actually slept all of last night. I was determined to go to church today, so with the help of a big dose of Zofran (for the chemo puking) and Dilaudid (for the headache) -- I made it. I was pretty proud of us, because we haven't picked up the new (to us, at least) truck yet. Since our car only seats 5 and we are a family of 6 -- that meant 2 trips to and from church. Luckily, the church isn't too far away. And I was glad to go. Since then, I came home and have been resting comfortably in bed.
Tomorrow I am going to see the neurologist with Bill at 10:30. Hopefully, he'll have some answers to what's going on in my loopy brain. And then at 3:00 Annie is taking me to the urologist, which is always fun, right?
More later...it only gets better from here;-)
Much Love,
Shel
I am having some relief with my lupus headache, since I finished the 3rd round of IV Solumedrol. I'm happy -- but it's about time! I am able to go longer between pain med doses and I actually slept all of last night. I was determined to go to church today, so with the help of a big dose of Zofran (for the chemo puking) and Dilaudid (for the headache) -- I made it. I was pretty proud of us, because we haven't picked up the new (to us, at least) truck yet. Since our car only seats 5 and we are a family of 6 -- that meant 2 trips to and from church. Luckily, the church isn't too far away. And I was glad to go. Since then, I came home and have been resting comfortably in bed.
Tomorrow I am going to see the neurologist with Bill at 10:30. Hopefully, he'll have some answers to what's going on in my loopy brain. And then at 3:00 Annie is taking me to the urologist, which is always fun, right?
More later...it only gets better from here;-)
Much Love,
Shel
Saturday, November 20, 2010
It's raining, it's pouring...
Dear Friends,
Out with the old, and in with the new. It seemed appropriate that I woke up to pouring rain today. It made me think of all the more seasonal states I lived in like Wisconsin and rainy Washington, and even Florida where we got monsoon rains with thunder and lightning and hurricanes. I love sunny California, but sometimes I miss the seasons and a good, hard rain. So, today was my morning -- and I visualized the chemo/steroids washing away my old illness, so that new healthy cells could grow. And I'm not usually into happy visualization -- I'm generally more whiney as they inject toxic chemicals into my port to kill the bad stuff while unfortunately, also killing the good stuff inside me:-) But it saves my life...so while it's not a pleasant choice, it's definitely necessary.
I had a rough night last night and gave up after sleeping less than 5 hours... I kept waking up to vomit (gotta love chemo) and/or take Dilaudid (for pain) or Zofran (to stop puking). At 5 a.m. I decided it was more miserable to try to sleep, so I lay in bed watching while Isaac, Bill and all the animals sleeped. I played on my laptop and nobody seemed bothered. I would've moved to the sofa if it seemed to bother them, but it was more comfortable in bed and closer to the bathroom where I was spending too much time anyway.
At 7 a.m. I got up and started obsessively cleaning the house (Saturday is our chore day after all), before anyone else was awake and could stop me. I cleaned the bathrooms kind of and put away the dishes. And I swept the kitchen and laundry room floor. I'll consider it my exercise for the day, and it kind of made me feel productive.
At 9 a.m. my home nurse showed up to do my third (and hopefully last, at least for now) Solumedrol infusion. My heart rate is starting to calm down and the pain was a bit better this morning. But once again, I've been pretty much grounded to my bed for the day, and Bill and the kids nicely finished cleaning the house for me. Unfortunately, the steroids make you worse before you feel better, so by the afternoon my headache was really bad and I look really bad -- puffy, discolored, bruised, etc. Tonight will be hard, but hopefully in the next day or two I will get some headache relief and can switch back to only the oral Prednisone. And maybe even Percocet versus Dilaudid...
Bill and the kids are hanging out and having a nice Saturday at home. Bill just went out to get ingredients for dinner, some of my prescriptions, and a different ankle brace for Molly. She is still struggling with a sprained ankle which has been taking FOREVER to heal. Her school PE class and HUGE campus for High School don't really help. Since she's off of school for the next week -- she'll have lots of time to rest it, take anti-inflammatories, and ice it. And Bill will take her back to the doctor to have it rechecked.
Other than that -- not much new here. I did manage about an hour nap in the late afternoon. I am still very sick, but hopefully on the road to recovery. I'm glad to be home. And between SuperMan, the kids, and the animals -- and my large teams of doctors, nurses, and friends -- I am well-loved and taken care of.
Tomorrow my goal is to go to church. I'm not sure it's a realistic goal. But I'll pray about it and Bill says maybe? It would feel grand...
More tomorrow and Much Love,
Michele
Out with the old, and in with the new. It seemed appropriate that I woke up to pouring rain today. It made me think of all the more seasonal states I lived in like Wisconsin and rainy Washington, and even Florida where we got monsoon rains with thunder and lightning and hurricanes. I love sunny California, but sometimes I miss the seasons and a good, hard rain. So, today was my morning -- and I visualized the chemo/steroids washing away my old illness, so that new healthy cells could grow. And I'm not usually into happy visualization -- I'm generally more whiney as they inject toxic chemicals into my port to kill the bad stuff while unfortunately, also killing the good stuff inside me:-) But it saves my life...so while it's not a pleasant choice, it's definitely necessary.
I had a rough night last night and gave up after sleeping less than 5 hours... I kept waking up to vomit (gotta love chemo) and/or take Dilaudid (for pain) or Zofran (to stop puking). At 5 a.m. I decided it was more miserable to try to sleep, so I lay in bed watching while Isaac, Bill and all the animals sleeped. I played on my laptop and nobody seemed bothered. I would've moved to the sofa if it seemed to bother them, but it was more comfortable in bed and closer to the bathroom where I was spending too much time anyway.
At 7 a.m. I got up and started obsessively cleaning the house (Saturday is our chore day after all), before anyone else was awake and could stop me. I cleaned the bathrooms kind of and put away the dishes. And I swept the kitchen and laundry room floor. I'll consider it my exercise for the day, and it kind of made me feel productive.
At 9 a.m. my home nurse showed up to do my third (and hopefully last, at least for now) Solumedrol infusion. My heart rate is starting to calm down and the pain was a bit better this morning. But once again, I've been pretty much grounded to my bed for the day, and Bill and the kids nicely finished cleaning the house for me. Unfortunately, the steroids make you worse before you feel better, so by the afternoon my headache was really bad and I look really bad -- puffy, discolored, bruised, etc. Tonight will be hard, but hopefully in the next day or two I will get some headache relief and can switch back to only the oral Prednisone. And maybe even Percocet versus Dilaudid...
Bill and the kids are hanging out and having a nice Saturday at home. Bill just went out to get ingredients for dinner, some of my prescriptions, and a different ankle brace for Molly. She is still struggling with a sprained ankle which has been taking FOREVER to heal. Her school PE class and HUGE campus for High School don't really help. Since she's off of school for the next week -- she'll have lots of time to rest it, take anti-inflammatories, and ice it. And Bill will take her back to the doctor to have it rechecked.
Other than that -- not much new here. I did manage about an hour nap in the late afternoon. I am still very sick, but hopefully on the road to recovery. I'm glad to be home. And between SuperMan, the kids, and the animals -- and my large teams of doctors, nurses, and friends -- I am well-loved and taken care of.
Tomorrow my goal is to go to church. I'm not sure it's a realistic goal. But I'll pray about it and Bill says maybe? It would feel grand...
More tomorrow and Much Love,
Michele
Friday, November 19, 2010
Cameron just escorted me back to bed and grounded me...
Hi Friends!
Apparently I've trained that boy too well. Cameron volunteered to stay home and babysit me today as Bill had a meeting at work this afternoon and some prep work to do before it. Cam and Molly have all of next week off of school for Thanksgiving Break, and apparently he was doing "nothing" in all of his classes today -- so Cam got the job by simply volunteering. Being on all my regular meds + high dose IV steroids + Dilaudid and Fentanyl, I am considered a risk to myself -- I can't imagine why??? I'm not going to take it personally that Cam's wearing a shirt that says: "You don't have to be crazy to work here...They'll train you."
Anyway, I slept fairly well last night with the help of pain meds and zofran for the vomiting. I can definitely feel the chemo -- I am not throwing up, but the idea of food is completely repulsive. So I am just focused on staying hydrated. My nurse, Mary, came at 9 a.m. this morning and adminstered my 2nd dose of IV solumedrol. After 2 days and 2 grams, I am flying high in a drug-induced stupor and not looking forward to the crash. After she left, I got up and was cleaning my already-clean-enough house and doing laundry. I managed to get in a bath and even paint my nails, before I was escorted back to bed by Cameron and grounded for the rest of today...he has Bill, the doctor, and nurse to back him up...so I will listen. Plus, he told me he's afraid I'll do too much and pass out. And even though Cam knows what to do in case of an emergency, I don't want to traumatize the sweet boy.
I received good news from the gynecologist. This week, I had a uterine biopsy, and it just came back normal. Praise the Lord -- because I don't think I could handle uterine cancer at this time. I'm still trying to break up with lupus...
Well, like I said -- I'm grounded to bed and it happens to be time for my Dilaudid. The house is fairly quiet -- so I think I'll try to get a nap in.
Much Love,
Michele
Apparently I've trained that boy too well. Cameron volunteered to stay home and babysit me today as Bill had a meeting at work this afternoon and some prep work to do before it. Cam and Molly have all of next week off of school for Thanksgiving Break, and apparently he was doing "nothing" in all of his classes today -- so Cam got the job by simply volunteering. Being on all my regular meds + high dose IV steroids + Dilaudid and Fentanyl, I am considered a risk to myself -- I can't imagine why??? I'm not going to take it personally that Cam's wearing a shirt that says: "You don't have to be crazy to work here...They'll train you."
Anyway, I slept fairly well last night with the help of pain meds and zofran for the vomiting. I can definitely feel the chemo -- I am not throwing up, but the idea of food is completely repulsive. So I am just focused on staying hydrated. My nurse, Mary, came at 9 a.m. this morning and adminstered my 2nd dose of IV solumedrol. After 2 days and 2 grams, I am flying high in a drug-induced stupor and not looking forward to the crash. After she left, I got up and was cleaning my already-clean-enough house and doing laundry. I managed to get in a bath and even paint my nails, before I was escorted back to bed by Cameron and grounded for the rest of today...he has Bill, the doctor, and nurse to back him up...so I will listen. Plus, he told me he's afraid I'll do too much and pass out. And even though Cam knows what to do in case of an emergency, I don't want to traumatize the sweet boy.
I received good news from the gynecologist. This week, I had a uterine biopsy, and it just came back normal. Praise the Lord -- because I don't think I could handle uterine cancer at this time. I'm still trying to break up with lupus...
Well, like I said -- I'm grounded to bed and it happens to be time for my Dilaudid. The house is fairly quiet -- so I think I'll try to get a nap in.
Much Love,
Michele
Thursday, November 18, 2010
TODAY...
Hi Friends,
I have no energy -- but I have promised to blog, so here is the summarized version.
Yesterday...
Saw Dr. Modlinger, the cardiologist -- had more heart testing and was hooked up to an "event monitor" -- press the button every time you have chest pain and then the cardiologist checks to see what your heart is doing at the time. Had a lot of chest pain today -- so I can send the event monitor back to Thousand Oaks tomorrow. The thought is that my high blood pressure/rapid heart rate is just a response to the extreme lupus pain -- but we'll see.
Saw Dr. Cohen, the rheumatologist -- who thought I looked awful (Thanks:-) and said I'm still in a major flare. We already did 2 doses of IV solumedrol, but he ordered a third and higher dose, a 3-day course to start today. Thankfully, it can be given at home via the home nurses. Also, I was to stick with the original plan of doing round #2 of Rituxan (chemo) at the hospital today. But it will take 6-8 weeks to get full relief from the chemo. So for now, I started back on Dilaudid plus the Fentanyl pain patch for pain relief. Bye bye percocet:-( You're not strong enough for my swollen brain pain.
Today...
Got up and sent the kids off to school by 8 a.m. Then left for Los Robles with Annie for chemo.
Rituxan chemotheraphy from 10 a.m. - 2:00 p.m.
drove home from Thousand Oaks
2:30 p.m. -- met my home nurse Mary at my house for IV Solumedrol and port care
after about an hour of treatment, Mary left...and I went to sleep,
woke up in pain -- took pain meds, ate Little Caesar's Pizza for dinner,
looked at the picture of the beige truck Bill and Isaac just bought to replace our Expedition.
And now back to bed for the night, I hope...Mary is coming back at 9 a.m. to do Day #2 of steroids...Hurray:-)
I blogged...good job for me:-) I am SuperMom, which makes sense since I am married to SuperMan.
Love, Shel
I have no energy -- but I have promised to blog, so here is the summarized version.
Yesterday...
Saw Dr. Modlinger, the cardiologist -- had more heart testing and was hooked up to an "event monitor" -- press the button every time you have chest pain and then the cardiologist checks to see what your heart is doing at the time. Had a lot of chest pain today -- so I can send the event monitor back to Thousand Oaks tomorrow. The thought is that my high blood pressure/rapid heart rate is just a response to the extreme lupus pain -- but we'll see.
Saw Dr. Cohen, the rheumatologist -- who thought I looked awful (Thanks:-) and said I'm still in a major flare. We already did 2 doses of IV solumedrol, but he ordered a third and higher dose, a 3-day course to start today. Thankfully, it can be given at home via the home nurses. Also, I was to stick with the original plan of doing round #2 of Rituxan (chemo) at the hospital today. But it will take 6-8 weeks to get full relief from the chemo. So for now, I started back on Dilaudid plus the Fentanyl pain patch for pain relief. Bye bye percocet:-( You're not strong enough for my swollen brain pain.
Today...
Got up and sent the kids off to school by 8 a.m. Then left for Los Robles with Annie for chemo.
Rituxan chemotheraphy from 10 a.m. - 2:00 p.m.
drove home from Thousand Oaks
2:30 p.m. -- met my home nurse Mary at my house for IV Solumedrol and port care
after about an hour of treatment, Mary left...and I went to sleep,
woke up in pain -- took pain meds, ate Little Caesar's Pizza for dinner,
looked at the picture of the beige truck Bill and Isaac just bought to replace our Expedition.
And now back to bed for the night, I hope...Mary is coming back at 9 a.m. to do Day #2 of steroids...Hurray:-)
I blogged...good job for me:-) I am SuperMom, which makes sense since I am married to SuperMan.
Love, Shel
Tuesday, November 16, 2010
TODAY IS BROUGHT TO YOU BY...
Dr. Silverman and Michele's uterus...
Hi Friends!
I'm trying to get back on the blogwagon -- so here's what's going on today. I just sent the kids and Bill off to school and work, and I am waiting for Annie (my Alice) to come and drive me to see the gynecologist, Dr. Silverman. (Always fun, isn't it ladies???) Today I need to have a uterine biopsy done as I've had some unexplained bleeding after menopause and apparently my uterine lining is much thicker than it should be. I am followed closely by the gynecologist, because the chemotherapy (Rituxan) which is currently saving me from my lupus -- ironically puts me at increased risk for breast, cervical, uterine, and bladder cancer.
So, that will be our fun outing for today. I am really not feeling well. Super bad lupus headache and chest pain. So, yeah -- why not throw in messing with my uterus??? Wednesday I go back to the cardiologist and to see Dr. Cohen. And Thursday I am doing my second cycle of Rituxan at Los Robles. And then on Monday, the 22nd, I am seeing the neurologist for brain testing. I also have a cystoscopy scheduled with the urologist that day. If you've never had a camera put into your bladder just for fun -- well, that's probably a good thing:-) I don't recommend it, but I do it cuz it would be silly to die of bladder cancer which is usually easily treatable.
Bill is looking for a replacement vehicle to buy since I torched our Expedition. We have 2 more weeks left with our rental of an Expedition -- so hopefully, he'll find something soon...
More tomorrow, I hope ---
Much Love,
Shel
Hi Friends!
I'm trying to get back on the blogwagon -- so here's what's going on today. I just sent the kids and Bill off to school and work, and I am waiting for Annie (my Alice) to come and drive me to see the gynecologist, Dr. Silverman. (Always fun, isn't it ladies???) Today I need to have a uterine biopsy done as I've had some unexplained bleeding after menopause and apparently my uterine lining is much thicker than it should be. I am followed closely by the gynecologist, because the chemotherapy (Rituxan) which is currently saving me from my lupus -- ironically puts me at increased risk for breast, cervical, uterine, and bladder cancer.
So, that will be our fun outing for today. I am really not feeling well. Super bad lupus headache and chest pain. So, yeah -- why not throw in messing with my uterus??? Wednesday I go back to the cardiologist and to see Dr. Cohen. And Thursday I am doing my second cycle of Rituxan at Los Robles. And then on Monday, the 22nd, I am seeing the neurologist for brain testing. I also have a cystoscopy scheduled with the urologist that day. If you've never had a camera put into your bladder just for fun -- well, that's probably a good thing:-) I don't recommend it, but I do it cuz it would be silly to die of bladder cancer which is usually easily treatable.
Bill is looking for a replacement vehicle to buy since I torched our Expedition. We have 2 more weeks left with our rental of an Expedition -- so hopefully, he'll find something soon...
More tomorrow, I hope ---
Much Love,
Shel
Sunday, November 14, 2010
MAYBE IT WAS MORE THAN JUST A BUMP IN THE ROAD???
Hi Friends!
It was more like a fiery crash of the road...and then my truck exploded...
There's a reason I haven't blogged for a while. First, I came down with pericarditis and was hospitalized. Basically the lupus attacked my pericardium (the lining around my heart) causing severe pain, swelling, and some fluid built up. My blood pressure and heart rate were super-high. I spent several days in the hospital on high-dose steroids, anti-inflammatories and heavy-duty pain meds. I was then sent home to follow up out-patient. Now I'm used to this type of thing -- lupus is a systemic disease in that it attacks all of your systems. So, I needed to follow up with several specialists...
And then on my way from one doctor to the next in Thousand Oaks -- and yes, I was driving myself, and yes I was cleared to do so, I appear to have suffered a catatonic seizure while driving. I became disoriented, confused, and was completely unable to move. I was in the SUV alone when it left Rolling Oaks Drive, shearing off a electrical transformer and crashing at high speed before the vehicle burnt to the ground while I watched. It was rather dramatic to say the least. I had covered my day in prayer and God truly sent angels to protect me. I was pulled out of our Expedition, and put in a lady's car who then drove me away from the fire. We waited in front of BorderLine for the Los Robles ambulance to come get me, and we called Bill to tell him I was OK considering what had just happened.
I suffered chemical burns to my arms from the airbags, bruising from the seat belt, and a concussion from my head hitting the seat back and the steering wheel. But thank God, I didn't break anything (shocking considering my osteoporosis) or have a problems with my port which was hooked up with a needle for chemo/testing. It nicely stayed in place.
So, the basic concern is that I seem to be having seizures -- not a good sign for someone with a history of lupus attacking the brain. Obviously my days of driving are over, and we're just glad that a truck can be replaced. I was immediately switched off of my methotrexate (that remission was way too short if you ask me!!!) and put back on the more aggressive Rituxan chemotherapy. I have had home health nursing here providing me with IV steroids and hydrations and monitoring my general health, because I really really really don't want to go back to the hospital.
Bill's parents came and stayed with us for a week. They were a huge help and a fun distraction for the kids. We celebrated my 40th birthday on Friday, Nov. 12 -- and it felt like a huge accomplishment.
I really don't know much except for the lupus is once again in full flare. Tomorrow I am meeting with the cardiologist to discuss its effects on my heart. Tuesday I am having a uterine biopsy, because of some female abnormalities. Wednesday I meet with Dr. Cohen to discuss and plan out our lupus kick-butt treatment. And Thursday, I am scheduled for Rituxan (chemo) at Los Robles. I am also waiting to hear when the neurologist can squeeze me in to discuss my brain issues... it's almost funny:-0
Anyway, that's what I know...meanwhile I am supposed to be resting in bed. And since Bill surprised me with a laptop for my birthday -- I now never need to leave my room...I have been allowed to take a short walk up and down my street each day so that I don't have circulatory issues...but other than that -- my chest and head hurt too much to do anything else.
I'll blog again when I know something pertinent. The pictures of the accident and my 40th birthday are up on FB. Sorry, but I do not have the energy to post pictures on this blog anymore.
Much Love,
Michele
It was more like a fiery crash of the road...and then my truck exploded...
There's a reason I haven't blogged for a while. First, I came down with pericarditis and was hospitalized. Basically the lupus attacked my pericardium (the lining around my heart) causing severe pain, swelling, and some fluid built up. My blood pressure and heart rate were super-high. I spent several days in the hospital on high-dose steroids, anti-inflammatories and heavy-duty pain meds. I was then sent home to follow up out-patient. Now I'm used to this type of thing -- lupus is a systemic disease in that it attacks all of your systems. So, I needed to follow up with several specialists...
And then on my way from one doctor to the next in Thousand Oaks -- and yes, I was driving myself, and yes I was cleared to do so, I appear to have suffered a catatonic seizure while driving. I became disoriented, confused, and was completely unable to move. I was in the SUV alone when it left Rolling Oaks Drive, shearing off a electrical transformer and crashing at high speed before the vehicle burnt to the ground while I watched. It was rather dramatic to say the least. I had covered my day in prayer and God truly sent angels to protect me. I was pulled out of our Expedition, and put in a lady's car who then drove me away from the fire. We waited in front of BorderLine for the Los Robles ambulance to come get me, and we called Bill to tell him I was OK considering what had just happened.
I suffered chemical burns to my arms from the airbags, bruising from the seat belt, and a concussion from my head hitting the seat back and the steering wheel. But thank God, I didn't break anything (shocking considering my osteoporosis) or have a problems with my port which was hooked up with a needle for chemo/testing. It nicely stayed in place.
So, the basic concern is that I seem to be having seizures -- not a good sign for someone with a history of lupus attacking the brain. Obviously my days of driving are over, and we're just glad that a truck can be replaced. I was immediately switched off of my methotrexate (that remission was way too short if you ask me!!!) and put back on the more aggressive Rituxan chemotherapy. I have had home health nursing here providing me with IV steroids and hydrations and monitoring my general health, because I really really really don't want to go back to the hospital.
Bill's parents came and stayed with us for a week. They were a huge help and a fun distraction for the kids. We celebrated my 40th birthday on Friday, Nov. 12 -- and it felt like a huge accomplishment.
I really don't know much except for the lupus is once again in full flare. Tomorrow I am meeting with the cardiologist to discuss its effects on my heart. Tuesday I am having a uterine biopsy, because of some female abnormalities. Wednesday I meet with Dr. Cohen to discuss and plan out our lupus kick-butt treatment. And Thursday, I am scheduled for Rituxan (chemo) at Los Robles. I am also waiting to hear when the neurologist can squeeze me in to discuss my brain issues... it's almost funny:-0
Anyway, that's what I know...meanwhile I am supposed to be resting in bed. And since Bill surprised me with a laptop for my birthday -- I now never need to leave my room...I have been allowed to take a short walk up and down my street each day so that I don't have circulatory issues...but other than that -- my chest and head hurt too much to do anything else.
I'll blog again when I know something pertinent. The pictures of the accident and my 40th birthday are up on FB. Sorry, but I do not have the energy to post pictures on this blog anymore.
Much Love,
Michele
Tuesday, October 12, 2010
Cameron's Perspective of the loopy journey...
Hi Friends!
Cam wrote this essay for his English class. I thought he could do my blog today since he expressed his feelings so well.
Love,
Shel
Cameron Bland, 10/12/10
In this statement, I will be telling you about a life-changing experience. What happened to my family and me was traumatic. In many cases, the family might have split up and turned against each other. Instead our family learned to pull together, and I came out of the experience a better person. About three years ago, my Mom got very sick. She developed lupus, which is a disease in which your white-blood cells attack your vital organs such as your heart, your brain, your lungs, and your kidneys instead of protecting your body, as they should.
Before this happened, my Mom was a stay-at-home Mom. She was very energetic and would practically do all the household chores for us. After she got sick, she was in and out of the hospital all the time. When she was home, she was in bed most of the time. I have a large family. Besides my Mom and Dad, there are four children in our family. I have one younger sister named Molly who was eleven years old at the time. I have two younger brothers. When my Mom got sick, Nathaniel was nine years old and Isaac was five years old. I was fourteen years old when it happened and just starting high school.
Before this happened, I always thought this could happen to someone else but not to me. Then before I knew what was happening, my whole life changed. Instead of my Mom taking care of me, I began to help take care of her. Sometimes I had to stay home from school to watch my little brothers when she had a doctor’s appointment or was very sick from her chemotherapy. My Dad has to travel for work at times, and when he did I took on a lot of responsibility.
My Mom was going through chemotherapy. I had to be very careful because if I got even remotely sick, she could get deathly sick. She had no immune system to protect her body against even a common cold. We learned to wash our hands and sanitize the house against germs. This helped, but she still caught infections sometimes. I felt stressed out and very sad when she kept going to the hospital.
We were short on money sometimes, because of all the hospital stays and medications. I couldn’t afford the latest I-pods, cell phones, and video games that other teenagers had. Some bullies even made fun of me for this. My parents weren’t able to pay me allowance anymore even though I now did a lot of household chores. I learned to make do with less.
Many people were exceptionally kind to me during this time. My teachers understood why I had to miss school and supported me during this time. I have a family friend named Annie who helped a lot. She is sort of like an aunt to me. She kept things positive with her cheerful personality. No matter how stressful things were, I knew that when Annie came things would be fun. She came and helped a lot. She often came “bearing gifts” and stayed for a week or two.
It’s been 3 years now, and my Mom is doing much better. I am proud of how I handled this experience, and I think it taught me valuable life lessons. First of all, life isn’t fair. If it were, my Mom wouldn’t be sick. I also learned that the illness of one person in a family affects everyone. At fourteen, I had to grow up fast and my younger siblings had to grow up faster. I now have the ability to supervise others and mediate conflicts, thanks to my arguing brothers. I learned quickly how to prevent the spread of illness by taking care of myself. I learned how to keep calm even when stressed. I learned to be content with what I had rather than always wanting more. I never knew how nice other people could be, and it inspires me to be that nice. In conclusion, my Mom’s illness taught me important life skills that will help me to succeed in college and beyond.
***And I'll say it again, I have the best kids in the world:-)
Cam wrote this essay for his English class. I thought he could do my blog today since he expressed his feelings so well.
Love,
Shel
Cameron Bland, 10/12/10
In this statement, I will be telling you about a life-changing experience. What happened to my family and me was traumatic. In many cases, the family might have split up and turned against each other. Instead our family learned to pull together, and I came out of the experience a better person. About three years ago, my Mom got very sick. She developed lupus, which is a disease in which your white-blood cells attack your vital organs such as your heart, your brain, your lungs, and your kidneys instead of protecting your body, as they should.
Before this happened, my Mom was a stay-at-home Mom. She was very energetic and would practically do all the household chores for us. After she got sick, she was in and out of the hospital all the time. When she was home, she was in bed most of the time. I have a large family. Besides my Mom and Dad, there are four children in our family. I have one younger sister named Molly who was eleven years old at the time. I have two younger brothers. When my Mom got sick, Nathaniel was nine years old and Isaac was five years old. I was fourteen years old when it happened and just starting high school.
Before this happened, I always thought this could happen to someone else but not to me. Then before I knew what was happening, my whole life changed. Instead of my Mom taking care of me, I began to help take care of her. Sometimes I had to stay home from school to watch my little brothers when she had a doctor’s appointment or was very sick from her chemotherapy. My Dad has to travel for work at times, and when he did I took on a lot of responsibility.
My Mom was going through chemotherapy. I had to be very careful because if I got even remotely sick, she could get deathly sick. She had no immune system to protect her body against even a common cold. We learned to wash our hands and sanitize the house against germs. This helped, but she still caught infections sometimes. I felt stressed out and very sad when she kept going to the hospital.
We were short on money sometimes, because of all the hospital stays and medications. I couldn’t afford the latest I-pods, cell phones, and video games that other teenagers had. Some bullies even made fun of me for this. My parents weren’t able to pay me allowance anymore even though I now did a lot of household chores. I learned to make do with less.
Many people were exceptionally kind to me during this time. My teachers understood why I had to miss school and supported me during this time. I have a family friend named Annie who helped a lot. She is sort of like an aunt to me. She kept things positive with her cheerful personality. No matter how stressful things were, I knew that when Annie came things would be fun. She came and helped a lot. She often came “bearing gifts” and stayed for a week or two.
It’s been 3 years now, and my Mom is doing much better. I am proud of how I handled this experience, and I think it taught me valuable life lessons. First of all, life isn’t fair. If it were, my Mom wouldn’t be sick. I also learned that the illness of one person in a family affects everyone. At fourteen, I had to grow up fast and my younger siblings had to grow up faster. I now have the ability to supervise others and mediate conflicts, thanks to my arguing brothers. I learned quickly how to prevent the spread of illness by taking care of myself. I learned how to keep calm even when stressed. I learned to be content with what I had rather than always wanting more. I never knew how nice other people could be, and it inspires me to be that nice. In conclusion, my Mom’s illness taught me important life skills that will help me to succeed in college and beyond.
***And I'll say it again, I have the best kids in the world:-)
Wednesday, September 29, 2010
A BUMP IN THE ROAD...
Hi Friends,
I couldn't blog yesterday because yesterday was crazy. The high of getting some good news from Dr. Cohen Monday morning was overshadowed by the sounds of children coughing and crying and having fevers late Monday - early Tuesday morning. So, I got up Tuesday morning and instead of driving to T.O. to get my chemo meds -- I drove Cam and Isaac to Urgent Care. Nate stayed home. Bill went to work. Molly went to school.
Well, I got to Urgent Care and was immediately surrounded by a full waiting room of puking, coughing, sneezing, contagious people. I immediately asked for a face mask to maybe protect myself a bit, and then I was stared at as if I was the contagious person.
I filled out all the paperwork, and waited -- and we finally got in and saw a very nice doctor. I don't know if it helped -- but they put me in the coldest room that they NEVER use and they sprayed the room with disinfectant before I came in. It's enough that I've already been exposed to my kids -- didn't really need more.
Cam and Isaac have strep throat. And while we were meeting with the doctor, I received the cell phone call that Molly was sick and needed to be picked up from school. The doctor said she didn't want me to have to come back and she was nice enough to write Molly a prescription without seeing her. It was pretty much a no-brainer that she had strep...
So, we left Urgent Care around noon, picked up Molly at school -- and I took all the sicklies home, fed them lunch, medicated their symptoms, and left for Thousand Oaks. I drove to my favorite pharmacy and picked up my chemo meds with no problem from Rajiv. He also filled the prescriptions for my kids, and told me to call Dr. Cohen about the strep. At the same time, the doctor from Urgent Care called my cell to say she looked again at the strep test and it was really bad -- so "you need to call your doctor, because I've been thinking about you and I'm worried..." Thanks Rajiv and new doctor -- I'm concerned, too...
So, I drove back to Oxnard and medicated everyone with their antibiotics and Cam is taking cough medicine with codeine. He's hugging me a lot -- SO, I for one, like the codeine:-) I called Dr. Cohen and he agreed we needed to medicate me preventatively... because by that time I had a slight sore throat and my chest hurt, and for me -- everything always turns into pneumonia. By that time, Bill was on his way home from work and off I went to CVS to pick up my antibiotics. I started those last night and my throat already feels better. The kids are looking somewhat better, and I'm hoping Cam and Molly can go back to school tomorrow + tomorrow night is Open House.
For today we've all been sleeping, resting, and trying to get better. I'm hoping Nate and Bill will escape the illness...that the other kids get better...and that this doesn't interfere with my shot in the butt this weekend...Thank goodness for the B-12 shot I got on Monday as it's helping with energy:-)
Much Love,
Michele
I couldn't blog yesterday because yesterday was crazy. The high of getting some good news from Dr. Cohen Monday morning was overshadowed by the sounds of children coughing and crying and having fevers late Monday - early Tuesday morning. So, I got up Tuesday morning and instead of driving to T.O. to get my chemo meds -- I drove Cam and Isaac to Urgent Care. Nate stayed home. Bill went to work. Molly went to school.
Well, I got to Urgent Care and was immediately surrounded by a full waiting room of puking, coughing, sneezing, contagious people. I immediately asked for a face mask to maybe protect myself a bit, and then I was stared at as if I was the contagious person.
I filled out all the paperwork, and waited -- and we finally got in and saw a very nice doctor. I don't know if it helped -- but they put me in the coldest room that they NEVER use and they sprayed the room with disinfectant before I came in. It's enough that I've already been exposed to my kids -- didn't really need more.
Cam and Isaac have strep throat. And while we were meeting with the doctor, I received the cell phone call that Molly was sick and needed to be picked up from school. The doctor said she didn't want me to have to come back and she was nice enough to write Molly a prescription without seeing her. It was pretty much a no-brainer that she had strep...
So, we left Urgent Care around noon, picked up Molly at school -- and I took all the sicklies home, fed them lunch, medicated their symptoms, and left for Thousand Oaks. I drove to my favorite pharmacy and picked up my chemo meds with no problem from Rajiv. He also filled the prescriptions for my kids, and told me to call Dr. Cohen about the strep. At the same time, the doctor from Urgent Care called my cell to say she looked again at the strep test and it was really bad -- so "you need to call your doctor, because I've been thinking about you and I'm worried..." Thanks Rajiv and new doctor -- I'm concerned, too...
So, I drove back to Oxnard and medicated everyone with their antibiotics and Cam is taking cough medicine with codeine. He's hugging me a lot -- SO, I for one, like the codeine:-) I called Dr. Cohen and he agreed we needed to medicate me preventatively... because by that time I had a slight sore throat and my chest hurt, and for me -- everything always turns into pneumonia. By that time, Bill was on his way home from work and off I went to CVS to pick up my antibiotics. I started those last night and my throat already feels better. The kids are looking somewhat better, and I'm hoping Cam and Molly can go back to school tomorrow + tomorrow night is Open House.
For today we've all been sleeping, resting, and trying to get better. I'm hoping Nate and Bill will escape the illness...that the other kids get better...and that this doesn't interfere with my shot in the butt this weekend...Thank goodness for the B-12 shot I got on Monday as it's helping with energy:-)
Much Love,
Michele
Monday, September 27, 2010
Visit to My DD (Dear Doctor)
Hi Friends,
I saw Doctor Cohen today and he was a real pick-me-up:-) He agrees that the methotrexate is working, and I can take it for a very long time. And I don't have to do the chemo infusion of Rituxan that I was scheduled for this month. So happy day for me AND since the methotrexate in pill form is making me so pukey...I get to switch to a shot form. Thank God I have a sweet husband who has no problem shooting me up (with legal drugs of course), so I am golden. Never thought I'd be so happy to get a shot in my butt -- a real pain in the ass, for most people -- but not for me. And because it's a shot, it's supposed to bypass your stomach, which should be helpful. I also got more percocet and permission to stay on it forever if necessary. However, since it takes 6 months for the methotrexate to achieve its complete effects -- I'm hopefully going to continue to get better and be able to go down or maybe even completely get off it at some point.
So, the only glitch today was getting the RX filled for all the shots. I spent an hour at CVS, and ended up calling Dr. Cohen on his cell phone and having him talk to the pharmacist. Still too much confusion, because it's a larger dose than they're used to giving. So, tomorrow, I am going to see Rajiv in Thousand Oaks -- he's the pharmacist in Dr. Cohen's old office building...and Dr. Cohen and I decided it will work better to have him do it. They sure make us sick people work to get chemo drugs...I mean do they really have a problem with people coming in and wanting them? Trust me, they're good for staying alive -- but not much fun:-) So back to Thousand Oaks tomorrow -- I am going to go first thing after I wake up, and then since that will probably take forever -- I'll come home and sleep after the outing. And I'll feel better knowing that the drugs are here for my Saturday shot. Cameron is still sick enough to stay home from school, but well enough to be my substitute teacher while I'm off on my outing.
So, good night for now. According to Dr. Cohen, I need to be OK with a few bumps in the road -- but I'm hoping for smoother sailing for now...
Much Love,
Michele
I saw Doctor Cohen today and he was a real pick-me-up:-) He agrees that the methotrexate is working, and I can take it for a very long time. And I don't have to do the chemo infusion of Rituxan that I was scheduled for this month. So happy day for me AND since the methotrexate in pill form is making me so pukey...I get to switch to a shot form. Thank God I have a sweet husband who has no problem shooting me up (with legal drugs of course), so I am golden. Never thought I'd be so happy to get a shot in my butt -- a real pain in the ass, for most people -- but not for me. And because it's a shot, it's supposed to bypass your stomach, which should be helpful. I also got more percocet and permission to stay on it forever if necessary. However, since it takes 6 months for the methotrexate to achieve its complete effects -- I'm hopefully going to continue to get better and be able to go down or maybe even completely get off it at some point.
So, the only glitch today was getting the RX filled for all the shots. I spent an hour at CVS, and ended up calling Dr. Cohen on his cell phone and having him talk to the pharmacist. Still too much confusion, because it's a larger dose than they're used to giving. So, tomorrow, I am going to see Rajiv in Thousand Oaks -- he's the pharmacist in Dr. Cohen's old office building...and Dr. Cohen and I decided it will work better to have him do it. They sure make us sick people work to get chemo drugs...I mean do they really have a problem with people coming in and wanting them? Trust me, they're good for staying alive -- but not much fun:-) So back to Thousand Oaks tomorrow -- I am going to go first thing after I wake up, and then since that will probably take forever -- I'll come home and sleep after the outing. And I'll feel better knowing that the drugs are here for my Saturday shot. Cameron is still sick enough to stay home from school, but well enough to be my substitute teacher while I'm off on my outing.
So, good night for now. According to Dr. Cohen, I need to be OK with a few bumps in the road -- but I'm hoping for smoother sailing for now...
Much Love,
Michele
"I'm not crazy..."
"I've just been in a very bad mood for the past 40 years."
Hi Friends!
Yes, I watched Steel Magnolias yesterday. I also watched Outsourced, Sister Act, Dead Man Walking, GI Jane and a bunch of other movies this weekend. I watched movie after movie while laying in bed. I was trying to take my mind off the internal war going on in my body. Saturday and Sunday were miserable -- I was so sick that I questioned my decision to do chemo at all. I was so sick that while my 14 year old daughter helped me take a bath, I questioned whether this time of my life was just a bad dream. Molly...She's the best nurse ever -- better than any "real" nurse I've ever had, but I'm her Mom and I worry. So I asked Molly if it's hard to have a sick Mom. And she honestly replied that it is, because she has a lot of responsibility -- but that she doesn't mind. And she told me that it's OK to not do the chemo. She doesn't know what she'd do if she were me...Sometimes I don't know what I'd do if I were me, and I am. I get it...
By the end of Sunday, it was better...not good, but better. I was able to move from my bed to the living room sofa. Bill made blueberry pancakes for dinner. I used to make dinner. I started the tradition of having breakfast for dinner of Sunday years ago back when I grocery shopped, cooked, cleaned and exercised... The pancakes were good...I kept them down, along with some rice, gatorade and popsicles. Now it's Hurray for me...I can eat:-)
By the end of the night, I was able to go to bed and snuggle up with SuperMan and actually sleep. Once again, SuperMan came and saved the day, catching Lois Lane as she was tumbling wildly toward the ground...
Today Bill went to work, and Molly went to school. Cam is still home sick with the same flu that I have. I wish that I could take care of him, not that a 17 year old "needs" taking care of...but it's a Mom thing, I guess. Nate and Isaac have routines and are able to learn and grow without me "supervising their learning" for today...I feel Ok today, but I am aware that if I push it -- I will start tumbling again. For today, I'll take it easy...call my friends, go see Dr. Cohen this afternoon.
A lot of people ask how I do it...I get it, I asked that about other people when they were sick. I do it, one step at a time, one moment at a time...I do it because it's the road I've been placed on. On good days, I do it with joy. On bad days, I do it while bitching. But what's important is that I do it...I've tried to quit on several occasions and God hasn't accepted my resignation. My family still needs me. And I still have more to learn.
So for now, I'm still on the sandy, beach road -- good, ocean-views and I'm not the driver, but thanks to all who are driving for me right now...
Much Love,
Michele
Hi Friends!
Yes, I watched Steel Magnolias yesterday. I also watched Outsourced, Sister Act, Dead Man Walking, GI Jane and a bunch of other movies this weekend. I watched movie after movie while laying in bed. I was trying to take my mind off the internal war going on in my body. Saturday and Sunday were miserable -- I was so sick that I questioned my decision to do chemo at all. I was so sick that while my 14 year old daughter helped me take a bath, I questioned whether this time of my life was just a bad dream. Molly...She's the best nurse ever -- better than any "real" nurse I've ever had, but I'm her Mom and I worry. So I asked Molly if it's hard to have a sick Mom. And she honestly replied that it is, because she has a lot of responsibility -- but that she doesn't mind. And she told me that it's OK to not do the chemo. She doesn't know what she'd do if she were me...Sometimes I don't know what I'd do if I were me, and I am. I get it...
By the end of Sunday, it was better...not good, but better. I was able to move from my bed to the living room sofa. Bill made blueberry pancakes for dinner. I used to make dinner. I started the tradition of having breakfast for dinner of Sunday years ago back when I grocery shopped, cooked, cleaned and exercised... The pancakes were good...I kept them down, along with some rice, gatorade and popsicles. Now it's Hurray for me...I can eat:-)
By the end of the night, I was able to go to bed and snuggle up with SuperMan and actually sleep. Once again, SuperMan came and saved the day, catching Lois Lane as she was tumbling wildly toward the ground...
Today Bill went to work, and Molly went to school. Cam is still home sick with the same flu that I have. I wish that I could take care of him, not that a 17 year old "needs" taking care of...but it's a Mom thing, I guess. Nate and Isaac have routines and are able to learn and grow without me "supervising their learning" for today...I feel Ok today, but I am aware that if I push it -- I will start tumbling again. For today, I'll take it easy...call my friends, go see Dr. Cohen this afternoon.
A lot of people ask how I do it...I get it, I asked that about other people when they were sick. I do it, one step at a time, one moment at a time...I do it because it's the road I've been placed on. On good days, I do it with joy. On bad days, I do it while bitching. But what's important is that I do it...I've tried to quit on several occasions and God hasn't accepted my resignation. My family still needs me. And I still have more to learn.
So for now, I'm still on the sandy, beach road -- good, ocean-views and I'm not the driver, but thanks to all who are driving for me right now...
Much Love,
Michele
Saturday, September 25, 2010
DECISIONS, DECISIONS...
Hi Friends,
Thanks for your continued love, support, and prayers. I like that I am allowed to make the decisions regarding my medical treatment -- it's my body, my quality of life, etc. But sometimes I don't like the choices. Today for example -- Saturday is my megadose of methotrexate (where I take 8 chemo pills at once), and usually I'm pretty sick for Saturday and Sunday -- then OK for the rest of the week. Well, today I had two choices. 1. Take the chemo pills on top of already having the flu. Better for the lupus, but could make me VERY pukey and possibly dehydrated and needing IV fluids. or 2. Skip the methotrexate for this week. Better for the flu recovery, but after 8 weeks we finally had the methotrexate to a therapeutic level. So, I'd be taking the chance that lupus crap would be back and it might takes weeks to get back to my current pre-flu health.
I thought for a while, and consulted SuperMan and Dear Doctor, who both said it was up to me to decide whether I could handle the treatment today. And I'm SO invested in this remission that I chose to take the pills. I hope it was the right choice long-term. Because short-term it has been a really sucky day spent mostly on the floor next to my toilet. I remember the first time I was hospitalized in the oncology ward at LosRobles, and all I could hear was the sounds of people wretching and crying. It was so sad. Now I can say I feel their pain. I'm spending so much time on my bathroom floor that I'm seriously considering moving a pillow and blanket in there:-(
Of course, I'd have to bring in the netbook, too. I've been watching NetFlix for most of the day -- so far, The Man Without A Face, Good Will Hunting, and Outsourced. I have to keep my mind off the sick feeling...
SuperMan is home and he cooked dinner, did all the weekly chores with the kids, and just now got groceries. He brought me GatorAde and popsicles for hydration, so I'm working on the hydration:-) I think I can, I think I can....
But for today, lupus sucks, chemo sucks, menopause at 39 (brought on by the chemo) sucks:-) IT ALL BITES...except SuperMan and the kids taking care of me. But Isaac and Cam are still pretty sick themselves...
Gonna call Bill for a popsicle...yum, dinner:-)
Love to all!
Michele
Thanks for your continued love, support, and prayers. I like that I am allowed to make the decisions regarding my medical treatment -- it's my body, my quality of life, etc. But sometimes I don't like the choices. Today for example -- Saturday is my megadose of methotrexate (where I take 8 chemo pills at once), and usually I'm pretty sick for Saturday and Sunday -- then OK for the rest of the week. Well, today I had two choices. 1. Take the chemo pills on top of already having the flu. Better for the lupus, but could make me VERY pukey and possibly dehydrated and needing IV fluids. or 2. Skip the methotrexate for this week. Better for the flu recovery, but after 8 weeks we finally had the methotrexate to a therapeutic level. So, I'd be taking the chance that lupus crap would be back and it might takes weeks to get back to my current pre-flu health.
I thought for a while, and consulted SuperMan and Dear Doctor, who both said it was up to me to decide whether I could handle the treatment today. And I'm SO invested in this remission that I chose to take the pills. I hope it was the right choice long-term. Because short-term it has been a really sucky day spent mostly on the floor next to my toilet. I remember the first time I was hospitalized in the oncology ward at LosRobles, and all I could hear was the sounds of people wretching and crying. It was so sad. Now I can say I feel their pain. I'm spending so much time on my bathroom floor that I'm seriously considering moving a pillow and blanket in there:-(
Of course, I'd have to bring in the netbook, too. I've been watching NetFlix for most of the day -- so far, The Man Without A Face, Good Will Hunting, and Outsourced. I have to keep my mind off the sick feeling...
SuperMan is home and he cooked dinner, did all the weekly chores with the kids, and just now got groceries. He brought me GatorAde and popsicles for hydration, so I'm working on the hydration:-) I think I can, I think I can....
But for today, lupus sucks, chemo sucks, menopause at 39 (brought on by the chemo) sucks:-) IT ALL BITES...except SuperMan and the kids taking care of me. But Isaac and Cam are still pretty sick themselves...
Gonna call Bill for a popsicle...yum, dinner:-)
Love to all!
Michele
Friday, September 24, 2010
The Best of Times, The Worst of Times OR For Every Action, there is an equal and opposite reactions OR i don't know..
Hi Friends!
Life is complicated and when I don't blog for a while, it's usually because I have mixed-up feelings and am struggling with them...SO today, I'm blogging anyway...I couldn't decide on a title or topic, so I'll just go with some random thoughts...
Life sucks, but "if the world didn't suck we'd all fall off." (Larry the Cable Guy)
I think I'm in remission. That makes me happy after 3 years of fighting for my life against my loopy disease. However, I'll probably be taking chemo drugs forever to sustain this remission and having no immune system is sometimes as hard as having an overactive immune system. I can have lupus kill me by attacking my organs one by one or I can kill my immune system with chemo drugs -- and catch every illness there ever was. Obviously, I choose to live -- BUT I don't like the no immune system thing 'cause right now I have the flu...And sometimes I wish I didn't have to choose between overactive or no immune system...sometimes I want to be normal, but then I remind myself that Normal is just a setting on my dryer...so who cares...but sometimes I do, you know what I mean?
Which brings me to: I love Channel Islands High School. Cameron and Molly go there. They're learning and growing and being highschoolers...But I hate the beginning of the school year when they bring home every illness they're exposed to.
In turn that brings me to -- I hate that me, Cam, and Isaac have the flu. I hate that Bill is not here. I hate that I had to keep Molly at home from school today, because I was unable to drive her. But I love that Bill and Nate are in D.C. bonding and seeing the sights and I love that Molly is taking care of the rest of us -- cooking and cleaning and loving us...she's an awesome young lady!
And I'm sure others feel this way -- but I hate children puking on the bathroom floor late at night (although at least he made it to the tile, and out of the carpeted bedroom)...and I hate deciding whether Molly (who is still healthy) or me (already sick, but with no immune system) should be the one to clean it up. But I love Clorox disinfecting wipes and the sanitary setting on my washer. They take what's dirty and disgusting and make it germ-free and white as snow...sort of reminds me of God.
I hate that my attempt to wean myself off Percocet failed, and I'll be taking it for however long I need it for the pain...BUT I'm glad it now completely takes the pain away and I don't take morphine or dilaudid injected into my sickly veins.
I hate looking at the big picture...I hate thinking ahead or worrying about what's next...but I thank God for the knowledge that I don't have to...my life is now, this moment, and I am glad that this illness showed me that I only need the grace necessary for each moment. I trust God to have the plan, but I'm human...and sometimes it seems too hard.
I hate people who think I should be positive all the time...and visualize the chemo eating up my lupus. I want to scream at them to shut up and listen! I have the disease killing my tissues, joints, organs -- one by one, you get to give advice when the toxins are hooked up to the central line which has been surgically implanted into the vein leading to your heart. If you haven't walked in my shoes, you don't know...
And on the other hand, I have my positive days...my good moments, I'm thankful for a cure...I'm thankful for the people in my life who just listen, and hold me, and love me as flawed as I am. And I recognize that everyone has something that they're going through...I thank the others who are brave enough to share their struggles and triumphs with me...it's just the JOYSUCKERS in life -- I have to find a happy medium between being patient with them and protecting myself.
I hate being viewed as an illness...thanks for being considerate, thanks for recognizing that I have limitations...but I was Michele long before this happened. While I'm fine with sharing who I am and never thought I needed to hide this illness -- please view me as a whole person who happens to be sick, not a sick person who need help.
I'm sad and happy at the same time that this happened to me...people who I thought loved me, fell away and others stepped up...complete strangers reached out to me and showed more caring than others I had known forever...please don't bother if I'm an obligation -- I don't need your "help."
I struggle with the brain damage that occurred when the lupus started eating away at my brain. Please don't tell me about the friend you have with lupus who has skin problems -- my lupus attacked my brain, my heart and almost killed me. At some point, it probably will kill me. I've seen the scans -- I know my own brain. It has it advantages -- you can tell me the same story over and over, I forget about big and small things that do and don't matter. However, I struggle with what I can and cannot do -- can I drive, do my own meds, teach my children? Please don't weigh in unless you are sure you know the whole story and most of you don't. I've had plenty of people tell me I'm fine to drive -- glad I look fine, and it would be more convenient -- but I'm the one (along with SuperMan and DDoctor) who has the whole picture.
I asked Bill for one word to describe me, because after all -- who knows me better than SuperMan. He said "content" and it's fitting...I'm content with my life, I'm happy and joyful generally regardless of the circumstances. And I have peace with God and am unafraid to die -- which by the way, is not the same as wanting to die right now. But I'm human, I'm bitchy sometimes, and I have my days. I'd appreciate no judgement -- but I know there will be plenty. I get it...if you really put yourself in my shoes, you'd have to admit you're invincible, too. Because one day, I was fine...and then I WAS NOT!
And these are the ramblings of a loopy mind with no narcotics on board...For now, I choose life, I choose joy, I choose love, I choose the rollercoaster, zoo-like life I lead. View this whole blog as a rant of a crazy mind if you wish -- but it helped to get it out there.
I'll end with saying that Isaac today noticed I'm not coughing anymore. Big achievement considering the lupus had hit my lungs, which wasn't pleasant. My 8 year old said, "You're getting better, Mom. Your life used to be a bumpy road, but now you're on a smooth road -- it's like a sandy, beach road now!" Well, I love that little guy and can't believe how insightful he is. So, here's looking forward to a smooth road, an ocean view for a while, and maybe a little less puking all around:-)
Much Love,
Michele
Life is complicated and when I don't blog for a while, it's usually because I have mixed-up feelings and am struggling with them...SO today, I'm blogging anyway...I couldn't decide on a title or topic, so I'll just go with some random thoughts...
Life sucks, but "if the world didn't suck we'd all fall off." (Larry the Cable Guy)
I think I'm in remission. That makes me happy after 3 years of fighting for my life against my loopy disease. However, I'll probably be taking chemo drugs forever to sustain this remission and having no immune system is sometimes as hard as having an overactive immune system. I can have lupus kill me by attacking my organs one by one or I can kill my immune system with chemo drugs -- and catch every illness there ever was. Obviously, I choose to live -- BUT I don't like the no immune system thing 'cause right now I have the flu...And sometimes I wish I didn't have to choose between overactive or no immune system...sometimes I want to be normal, but then I remind myself that Normal is just a setting on my dryer...so who cares...but sometimes I do, you know what I mean?
Which brings me to: I love Channel Islands High School. Cameron and Molly go there. They're learning and growing and being highschoolers...But I hate the beginning of the school year when they bring home every illness they're exposed to.
In turn that brings me to -- I hate that me, Cam, and Isaac have the flu. I hate that Bill is not here. I hate that I had to keep Molly at home from school today, because I was unable to drive her. But I love that Bill and Nate are in D.C. bonding and seeing the sights and I love that Molly is taking care of the rest of us -- cooking and cleaning and loving us...she's an awesome young lady!
And I'm sure others feel this way -- but I hate children puking on the bathroom floor late at night (although at least he made it to the tile, and out of the carpeted bedroom)...and I hate deciding whether Molly (who is still healthy) or me (already sick, but with no immune system) should be the one to clean it up. But I love Clorox disinfecting wipes and the sanitary setting on my washer. They take what's dirty and disgusting and make it germ-free and white as snow...sort of reminds me of God.
I hate that my attempt to wean myself off Percocet failed, and I'll be taking it for however long I need it for the pain...BUT I'm glad it now completely takes the pain away and I don't take morphine or dilaudid injected into my sickly veins.
I hate looking at the big picture...I hate thinking ahead or worrying about what's next...but I thank God for the knowledge that I don't have to...my life is now, this moment, and I am glad that this illness showed me that I only need the grace necessary for each moment. I trust God to have the plan, but I'm human...and sometimes it seems too hard.
I hate people who think I should be positive all the time...and visualize the chemo eating up my lupus. I want to scream at them to shut up and listen! I have the disease killing my tissues, joints, organs -- one by one, you get to give advice when the toxins are hooked up to the central line which has been surgically implanted into the vein leading to your heart. If you haven't walked in my shoes, you don't know...
And on the other hand, I have my positive days...my good moments, I'm thankful for a cure...I'm thankful for the people in my life who just listen, and hold me, and love me as flawed as I am. And I recognize that everyone has something that they're going through...I thank the others who are brave enough to share their struggles and triumphs with me...it's just the JOYSUCKERS in life -- I have to find a happy medium between being patient with them and protecting myself.
I hate being viewed as an illness...thanks for being considerate, thanks for recognizing that I have limitations...but I was Michele long before this happened. While I'm fine with sharing who I am and never thought I needed to hide this illness -- please view me as a whole person who happens to be sick, not a sick person who need help.
I'm sad and happy at the same time that this happened to me...people who I thought loved me, fell away and others stepped up...complete strangers reached out to me and showed more caring than others I had known forever...please don't bother if I'm an obligation -- I don't need your "help."
I struggle with the brain damage that occurred when the lupus started eating away at my brain. Please don't tell me about the friend you have with lupus who has skin problems -- my lupus attacked my brain, my heart and almost killed me. At some point, it probably will kill me. I've seen the scans -- I know my own brain. It has it advantages -- you can tell me the same story over and over, I forget about big and small things that do and don't matter. However, I struggle with what I can and cannot do -- can I drive, do my own meds, teach my children? Please don't weigh in unless you are sure you know the whole story and most of you don't. I've had plenty of people tell me I'm fine to drive -- glad I look fine, and it would be more convenient -- but I'm the one (along with SuperMan and DDoctor) who has the whole picture.
I asked Bill for one word to describe me, because after all -- who knows me better than SuperMan. He said "content" and it's fitting...I'm content with my life, I'm happy and joyful generally regardless of the circumstances. And I have peace with God and am unafraid to die -- which by the way, is not the same as wanting to die right now. But I'm human, I'm bitchy sometimes, and I have my days. I'd appreciate no judgement -- but I know there will be plenty. I get it...if you really put yourself in my shoes, you'd have to admit you're invincible, too. Because one day, I was fine...and then I WAS NOT!
And these are the ramblings of a loopy mind with no narcotics on board...For now, I choose life, I choose joy, I choose love, I choose the rollercoaster, zoo-like life I lead. View this whole blog as a rant of a crazy mind if you wish -- but it helped to get it out there.
I'll end with saying that Isaac today noticed I'm not coughing anymore. Big achievement considering the lupus had hit my lungs, which wasn't pleasant. My 8 year old said, "You're getting better, Mom. Your life used to be a bumpy road, but now you're on a smooth road -- it's like a sandy, beach road now!" Well, I love that little guy and can't believe how insightful he is. So, here's looking forward to a smooth road, an ocean view for a while, and maybe a little less puking all around:-)
Much Love,
Michele
Tuesday, September 14, 2010
MY ABC's
Hi Friends!
I haven't blogged for a while... so much to say and so little energy to recap all that I have done. Since I last blogged, I was blessed with a day at DisneyLand with Annie, Nate, and Isaac. It was a beautiful day filled with precious memories...and thanks to God and his angel (Annie), I was able to fulfill a promise made in 2009 to take all the kids to DisneyLand. We also spent a weekend out on the land and it was wonderful. Being out there in the vastness of nature and standing on the site where we will build our home -- well, it helps me to remember what the dream is and why we're making sacrifices to get there. I took tons of pictures and posted them on FB, so if you aren't following on FB -- I'd encourage you to do so. It's too time-consuming for me to post the photos here.
As far as my health...I'm slated for chemo in October...I have good days and bad. I hope the methotrexate (chemo pills) are working, but it's too soon to tell. I take it every Saturday and the side effects aren't very pleasant -- makes me sick to my stomach and depletes all my energy.
So, I focus on the good -- not the bad. I've recently gotten e-mails from several friends where they do the ABCs of themselves. This is mine... and I'm sharing it with you all. Don't take it too seriously. I went with my first impressions for each letter and did it quickly while the boys were playing at the park this afternoon. BTW -- the boys wrote poetry today, too. And I guess I was struck with the simplicity of doing my own ABCs for self-reflection at the beginning of the schoolyear.
Much Love,
Shel
-------
My ABCs
A westruck by the beauty of nature.
B oys -- I have 3 active, dirty, fun-loving, wonderful boys named Cameron (Cam), Nathaniel (Nate), and Isaac (usually Isaac, but sometimes, Zac).
C ats -- Itty Bitty Kitty (IBK) and Mr. Bojangles (BoBo) are my sweet and special kitty cats.
D og -- I have one dog named Bingo and he's a chocolate lab.
E arth is my temporary home...I treasure it and take care of it because God made it, but I believe that heaven is where I belong.
F unny -- Life is fun and funny. I laugh every day:-)
G irl -- I have one girly-girl, my daughter Molly who is lovely, kind, and musical.
H ero/husband -- My dear husband is Bill and we've been married almost 20 years. He's the SuperMan to my Lois Lane.
I ce Cream can make anything better, especially if it's chocolate.
J oy is a choice and can be found no matter what your circumstance:-)
K iss -- it never gets old to kiss SuperMan (review H for Husband/Hero) and my children are never too old for my kisses...shh!!! sometimes I have to kiss the older ones while they sleep:-)
L upus...need I say more...the gift that keeps on giving, and yes -- I am serious!
M om -- the 2nd best job I've ever had...(see W for the 1st)
N ormal is just a setting on your dryer!!!
O range is my favorite color.
P rincess -- Everyone should have one and mine is Molly.
Q ueen -- That's me and I'm blessed to have a family who treats me like one.
R ight is a word that people use too frequently and often for the WRONG reasons.
S hel is what those who love me call me.
T rees -- Love them and The Giving Tree, by Shel Silverstein, is my favorite book of all time.
U nique -- I take pleasure in my uniqueness...being complicated is a compliment!
V icariously -- I have mastered the art of living vicariously through others and their adventures. So, thanks to all my FB friends for taking me along where you go!
W ife -- The first best job I ever had.(See M for the 2nd)
eXceptional -- The life that my God has gifted me with.
Y o yo -- I feel like I'm a yo-yo with my health, but I focus on the ups, not the downs!
Z oo -- My house, My life ... It's a zoo. I want it that way. You may not get it, but it works for me
------
So, I dare you to do your ABC's...people are always sending random e-mails, why not send something that gives others insight into who you really are:-)
Love, Shel
I haven't blogged for a while... so much to say and so little energy to recap all that I have done. Since I last blogged, I was blessed with a day at DisneyLand with Annie, Nate, and Isaac. It was a beautiful day filled with precious memories...and thanks to God and his angel (Annie), I was able to fulfill a promise made in 2009 to take all the kids to DisneyLand. We also spent a weekend out on the land and it was wonderful. Being out there in the vastness of nature and standing on the site where we will build our home -- well, it helps me to remember what the dream is and why we're making sacrifices to get there. I took tons of pictures and posted them on FB, so if you aren't following on FB -- I'd encourage you to do so. It's too time-consuming for me to post the photos here.
As far as my health...I'm slated for chemo in October...I have good days and bad. I hope the methotrexate (chemo pills) are working, but it's too soon to tell. I take it every Saturday and the side effects aren't very pleasant -- makes me sick to my stomach and depletes all my energy.
So, I focus on the good -- not the bad. I've recently gotten e-mails from several friends where they do the ABCs of themselves. This is mine... and I'm sharing it with you all. Don't take it too seriously. I went with my first impressions for each letter and did it quickly while the boys were playing at the park this afternoon. BTW -- the boys wrote poetry today, too. And I guess I was struck with the simplicity of doing my own ABCs for self-reflection at the beginning of the schoolyear.
Much Love,
Shel
-------
My ABCs
A westruck by the beauty of nature.
B oys -- I have 3 active, dirty, fun-loving, wonderful boys named Cameron (Cam), Nathaniel (Nate), and Isaac (usually Isaac, but sometimes, Zac).
C ats -- Itty Bitty Kitty (IBK) and Mr. Bojangles (BoBo) are my sweet and special kitty cats.
D og -- I have one dog named Bingo and he's a chocolate lab.
E arth is my temporary home...I treasure it and take care of it because God made it, but I believe that heaven is where I belong.
F unny -- Life is fun and funny. I laugh every day:-)
G irl -- I have one girly-girl, my daughter Molly who is lovely, kind, and musical.
H ero/husband -- My dear husband is Bill and we've been married almost 20 years. He's the SuperMan to my Lois Lane.
I ce Cream can make anything better, especially if it's chocolate.
J oy is a choice and can be found no matter what your circumstance:-)
K iss -- it never gets old to kiss SuperMan (review H for Husband/Hero) and my children are never too old for my kisses...shh!!! sometimes I have to kiss the older ones while they sleep:-)
L upus...need I say more...the gift that keeps on giving, and yes -- I am serious!
M om -- the 2nd best job I've ever had...(see W for the 1st)
N ormal is just a setting on your dryer!!!
O range is my favorite color.
P rincess -- Everyone should have one and mine is Molly.
Q ueen -- That's me and I'm blessed to have a family who treats me like one.
R ight is a word that people use too frequently and often for the WRONG reasons.
S hel is what those who love me call me.
T rees -- Love them and The Giving Tree, by Shel Silverstein, is my favorite book of all time.
U nique -- I take pleasure in my uniqueness...being complicated is a compliment!
V icariously -- I have mastered the art of living vicariously through others and their adventures. So, thanks to all my FB friends for taking me along where you go!
W ife -- The first best job I ever had.(See M for the 2nd)
eXceptional -- The life that my God has gifted me with.
Y o yo -- I feel like I'm a yo-yo with my health, but I focus on the ups, not the downs!
Z oo -- My house, My life ... It's a zoo. I want it that way. You may not get it, but it works for me
------
So, I dare you to do your ABC's...people are always sending random e-mails, why not send something that gives others insight into who you really are:-)
Love, Shel
Monday, August 30, 2010
FIRST WEEK OF SCHOOL...
Hi Friends,
This week started out with me taking my megadose of methotrexate on Saturday. I'm now up to taking 6 at a time, next week I will go up to 8 at a time, and then it will be time for bloodwork. I am hoping for a cure, but for right now methotrexate isn't a ton of fun... makes me fatigued, sick to my stomach, and very dizzy. So, I take zofran and pain meds to counteract that and I rest a lot for the days following...
I've been filling my in-bed time with lots of fun things. The kids and I watch NetFlix movies, or they create characters on their on-line games for me. Then I watch while they play for me. My favorite game right now is KungFuPandaWorld. They made me a panda because Panda's are friendly and flowing. Anyway, it's a cute game and time well spent with the kids.
On Saturday Bill and the boys completely cleaned and organized the garage. It looks great. They also took a drive (just 1 mile down the road) to Twin Tigers Tae Kwon where they are hoping to take lessons. It looked good and they are going to check out a class on Wednesday. Since Nate and Isaac are homeschooled, I think it's important to have them involved in some quality activities/programs with other kids their age. Also, on Saturday my kids did what we call the home blessing hour (basically they do the weekly chores). It was really sweet to see. Isaac mops all the floors wearing soapy socks, Nate vacuums the sofa, and Cameron vacuums all the carpet. The boys also clean out the truck each week and put meds in their containers. Molly is a hard-working young lady -- she does all the laundry, changes the sheets on all beds, dusts, and brushes the cats. They have daily jobs they do too -- but this house is easier for us to keep on, and the floorplan and area all suit us better.
On Sunday Bill took Cam, Molly, and Nate to church and I stayed home with a sleepy Isaac. I was really feeling ill. It seems that for now it's - methotrexate side effects + the lupus/fibro pain. It would be nice if I started the dreamy remission and then the methotrexate would be worth it! We'll see. Anyway after church, Bill and the kids went grocery shopping and then made tacos for dinner. They were the bomb:-)
I stayed up way late last night (till 3 a.m) watching stuff on NetFlix. I've watched Tuesdays with Morrie several times. It's the first movie I've watched that explains what you learn about living when death is hovering so close at times. I really relate to the characters in that movie. And when I'm not watching that, I've been watching the last 2 years of Grey's Anatomy. I love that show and used to watch all the time, but I stopped when I was really sick. So, now it's nice to catch up...
Shockingly after staying up that late, I still managed to get up and drive myself to the dentist. My appointment went really well, considering I hadn't been to one for 2 years. I had no cavities and the bleeding was minimal with the cleaning. My platelets are low, and so there was concern that if there was too much bleeding, it might be hard to stop. And I have no cavities. I do, however,need to have some of my childhood silver fillings replaced. So, we can hopefully get that done in the next month before it's October when I am scheduled to do 2 cycles of Rituxan.
I came home from the dentist, and I went to sleep until about 1:30. Then I lay in bed with Nate and Isaac and watched Grey's Anatomy some more. I have the two of them sucked in, too! We made macaroni and cheese for lunch. After that, Nate asked me if I'd take him to check out the nearby skatepark. So, I did...it's so big, nice, and close. It's across the street from Channel Islands High School. I watched my skater dude do some awesome tricks and spectacular crashes. It was so much fun for both of us, and we stayed about an hour. We got home and just had time to do our daily 15's (household tasks assigned to different people) and then Bill was home to make dinner. I did a breathing treatment and rested a bit. And soon it was time for our Before Bed Routine. Since school starts on Wednesday, we started enforcing our 10 p.m. bedtime today. And we have a shower schedule from 8-10 p.m.,since they all like to shower at night.
Tomorrow looks busy, too with a dental appointment for Bill and Molly, and an orthodontist appointment for Molly, too. We also need to turn in some last minute paperwork at the highschool. And we're going to have Cam tour Molly around the campus so that she has some idea of where to go for her classes. And of course, the skatepark was so fun that I promised Nate and Isaac they could go on Tuesday.
As far as my health goes -- having a lot of trouble with my lungs,joints,nervous system, and again brain - which causes a severe headache and memory issues. So prayers are much appreciated. My outlook on life is good, and I have a great team of doctors - but I also have some serious problems. It's complicated to be me <3
More soon...
Much Love,
Shel
This week started out with me taking my megadose of methotrexate on Saturday. I'm now up to taking 6 at a time, next week I will go up to 8 at a time, and then it will be time for bloodwork. I am hoping for a cure, but for right now methotrexate isn't a ton of fun... makes me fatigued, sick to my stomach, and very dizzy. So, I take zofran and pain meds to counteract that and I rest a lot for the days following...
I've been filling my in-bed time with lots of fun things. The kids and I watch NetFlix movies, or they create characters on their on-line games for me. Then I watch while they play for me. My favorite game right now is KungFuPandaWorld. They made me a panda because Panda's are friendly and flowing. Anyway, it's a cute game and time well spent with the kids.
On Saturday Bill and the boys completely cleaned and organized the garage. It looks great. They also took a drive (just 1 mile down the road) to Twin Tigers Tae Kwon where they are hoping to take lessons. It looked good and they are going to check out a class on Wednesday. Since Nate and Isaac are homeschooled, I think it's important to have them involved in some quality activities/programs with other kids their age. Also, on Saturday my kids did what we call the home blessing hour (basically they do the weekly chores). It was really sweet to see. Isaac mops all the floors wearing soapy socks, Nate vacuums the sofa, and Cameron vacuums all the carpet. The boys also clean out the truck each week and put meds in their containers. Molly is a hard-working young lady -- she does all the laundry, changes the sheets on all beds, dusts, and brushes the cats. They have daily jobs they do too -- but this house is easier for us to keep on, and the floorplan and area all suit us better.
On Sunday Bill took Cam, Molly, and Nate to church and I stayed home with a sleepy Isaac. I was really feeling ill. It seems that for now it's - methotrexate side effects + the lupus/fibro pain. It would be nice if I started the dreamy remission and then the methotrexate would be worth it! We'll see. Anyway after church, Bill and the kids went grocery shopping and then made tacos for dinner. They were the bomb:-)
I stayed up way late last night (till 3 a.m) watching stuff on NetFlix. I've watched Tuesdays with Morrie several times. It's the first movie I've watched that explains what you learn about living when death is hovering so close at times. I really relate to the characters in that movie. And when I'm not watching that, I've been watching the last 2 years of Grey's Anatomy. I love that show and used to watch all the time, but I stopped when I was really sick. So, now it's nice to catch up...
Shockingly after staying up that late, I still managed to get up and drive myself to the dentist. My appointment went really well, considering I hadn't been to one for 2 years. I had no cavities and the bleeding was minimal with the cleaning. My platelets are low, and so there was concern that if there was too much bleeding, it might be hard to stop. And I have no cavities. I do, however,need to have some of my childhood silver fillings replaced. So, we can hopefully get that done in the next month before it's October when I am scheduled to do 2 cycles of Rituxan.
I came home from the dentist, and I went to sleep until about 1:30. Then I lay in bed with Nate and Isaac and watched Grey's Anatomy some more. I have the two of them sucked in, too! We made macaroni and cheese for lunch. After that, Nate asked me if I'd take him to check out the nearby skatepark. So, I did...it's so big, nice, and close. It's across the street from Channel Islands High School. I watched my skater dude do some awesome tricks and spectacular crashes. It was so much fun for both of us, and we stayed about an hour. We got home and just had time to do our daily 15's (household tasks assigned to different people) and then Bill was home to make dinner. I did a breathing treatment and rested a bit. And soon it was time for our Before Bed Routine. Since school starts on Wednesday, we started enforcing our 10 p.m. bedtime today. And we have a shower schedule from 8-10 p.m.,since they all like to shower at night.
Tomorrow looks busy, too with a dental appointment for Bill and Molly, and an orthodontist appointment for Molly, too. We also need to turn in some last minute paperwork at the highschool. And we're going to have Cam tour Molly around the campus so that she has some idea of where to go for her classes. And of course, the skatepark was so fun that I promised Nate and Isaac they could go on Tuesday.
As far as my health goes -- having a lot of trouble with my lungs,joints,nervous system, and again brain - which causes a severe headache and memory issues. So prayers are much appreciated. My outlook on life is good, and I have a great team of doctors - but I also have some serious problems. It's complicated to be me <3
More soon...
Much Love,
Shel
Wednesday, August 25, 2010
I'm oh-so tireddddd...
Hi Friends!
Apparently taking chemo meds on top of all the lupus meds and pain meds I'm already taken = complete exhaustion. All I want to do is sleep... I don't feel awful...my pain is well-controlled, just really really tired. I guess it makes sense that killing your immune system would tire your body out, right? So, for now I'm just going with it. I went to sleep last night at 10 p.m. and slept on and off until 2 p.m. today. And I'm still really tired. I just sent all 4 kids to the park down the street. Nate and Isaac need to get out and use up some energy...but I felt they needed babysitters and also, it wouldn't kill my teenagers to get out and get some fresh air. So this was my chance to hop on one of the computers -- which are usually occupied by children -- and let you know that I'm still doing well, just sleepy...
Bill comes home tomorrow. And we have a date night scheduled -- our sweet Alice gave us some free tickets to a movie tomorrow night. Another reason to rest up today as I want the energy to go to a movie and not fall asleep in the theater.
So I've decided that anything I thought needed to be done today ... can just wait until tomorrow. Luckily I have good kids who can take care of themselves and each other and life goes on... Isaac has been trying to chase down the ice cream truck for the past few days. Hopefully he'll have success today. And Itty Bitty Kitty spent the whole night outside last night after pushing one of the screens out of a window. I didn't notice when I closed the windows last night before bed. But today we heard the sounds of a meowing kitty on our front doorstep. She was very happy to be let in. She and Bo Bo had a long cat conversation about the experience, and Molly wrapped IBK in a blankie and babied her for hours after the whole traumatic experience...
Good Night...
Much Love,
Michele
Apparently taking chemo meds on top of all the lupus meds and pain meds I'm already taken = complete exhaustion. All I want to do is sleep... I don't feel awful...my pain is well-controlled, just really really tired. I guess it makes sense that killing your immune system would tire your body out, right? So, for now I'm just going with it. I went to sleep last night at 10 p.m. and slept on and off until 2 p.m. today. And I'm still really tired. I just sent all 4 kids to the park down the street. Nate and Isaac need to get out and use up some energy...but I felt they needed babysitters and also, it wouldn't kill my teenagers to get out and get some fresh air. So this was my chance to hop on one of the computers -- which are usually occupied by children -- and let you know that I'm still doing well, just sleepy...
Bill comes home tomorrow. And we have a date night scheduled -- our sweet Alice gave us some free tickets to a movie tomorrow night. Another reason to rest up today as I want the energy to go to a movie and not fall asleep in the theater.
So I've decided that anything I thought needed to be done today ... can just wait until tomorrow. Luckily I have good kids who can take care of themselves and each other and life goes on... Isaac has been trying to chase down the ice cream truck for the past few days. Hopefully he'll have success today. And Itty Bitty Kitty spent the whole night outside last night after pushing one of the screens out of a window. I didn't notice when I closed the windows last night before bed. But today we heard the sounds of a meowing kitty on our front doorstep. She was very happy to be let in. She and Bo Bo had a long cat conversation about the experience, and Molly wrapped IBK in a blankie and babied her for hours after the whole traumatic experience...
Good Night...
Much Love,
Michele
Monday, August 23, 2010
I'M READY...
Hi Friends,
We have completely moved all of our stuff into the new rental house on Olive St. And now we're in the process of slowly unpacking the boxes. The kids all did their own rooms, and I did the master bedroom and bathrooms as well as the laundry room. Today Bill and I set up the dining room and yesterday we set up the whole kitchen. So, what's left is the living room, family room and hall way -- all of which are packed with boxes. And of course, we've got a ton of stuff in the garage which could use to be sorted through at some point. But we're making progress. And I hope to be pretty much settled into the house by Sept. 1st when school starts for the kids. This week Bill is going to Ft. Walton Beach, FL for a business trip -- so we'll see how much the kids and I get done without him here.
I started my newest "wonderdrug" and the last resort for lupus remission with an oral medicine. It's called methotrexate and is a chemotherapy drug that you take orally. In fact, I will take 8 pills (all at one time) once a week. After 13 rounds of chemotherapy and other torture treatments :-), I'd love to switch to a pill form that I could take long-term, so I'm ready and I'm hoping this works...Dr. Cohen says not to get my hopes up, though. Based on my response to all the other drugs of this type (Imuran, CellCept, etc.), he feels my chances of it working are "minimal." But it's worth a try while we're waiting for my next scheduled chemo in October. It has some major side effects -- but I didn't feel too bad after doing my first dose today...just dizzy and sick to my stomach. And I was prescribed Zofran, my drug of choice for nausea. I also have to take folic acid as it depletes your iron and I'm already anemic. And I'm starting trazadone for the fibromyalgia. So, I have a whole new medication regiment...just counted and I take 24 pills a day, except on Sunday when I do the methotrexate -- then I take 32. Not too bad, at one point I was taking almost 70 per day. Sadly, though, I can't drink any alcohol on the methotrexate...because it causes liver damage and mine is already damaged from the lupus. It's not like I'm a big drinker, but I do like the occasional margarita when I'm out with the girls or a shot of Jameson when I'm at home with Bill. Dr. Cohen told me I can have 4 alcoholic drinks per year. So, I guess I need to save those for special occasions.
So, have a drink for me when you want to. And I'd appreciate prayers that this new treatment will work. If you're not the praying type -- just send me happy thoughts. Bill and I prayed as I took the first dose, and we decided that it's about time for me to be cured. I've been sick for almost 3 years now. But ultimately I know that God has the plan, and that his strength is made perfect in my weakness. So, do I look forward to the illness or the treatment? No. But I'm more than just a lupus patient...I'm Michele, I'm a child of God, a wife, a mother, and my life has a purpose. I trust God to reveal it to me through my experiences one day, one hour, and sometimes one minute or one step at a time:-)
Now that I have internet...I will be back to blogging again. FaceBook is fun, but it's not the same as blogging. I feel like I can really get my thoughts and feelings out here, so it's good therapy for me. Also, I am able to let my friends and family know what is going on with my lupus and its treatment -- by sharing it one time for everyone to read at their convenience. And Bill linked the blog with FB, so my FB friends have the option of easily reading it, too.
Good Night! Or should I say Good Morning as it's past midnight. I took a very long nap after church today from about12:30-4:30, so I had too much energy in the evening. And I decided I better go with it while I had it. Because my energetic moments can be few and far between!
Much Love,
Michele
We have completely moved all of our stuff into the new rental house on Olive St. And now we're in the process of slowly unpacking the boxes. The kids all did their own rooms, and I did the master bedroom and bathrooms as well as the laundry room. Today Bill and I set up the dining room and yesterday we set up the whole kitchen. So, what's left is the living room, family room and hall way -- all of which are packed with boxes. And of course, we've got a ton of stuff in the garage which could use to be sorted through at some point. But we're making progress. And I hope to be pretty much settled into the house by Sept. 1st when school starts for the kids. This week Bill is going to Ft. Walton Beach, FL for a business trip -- so we'll see how much the kids and I get done without him here.
I started my newest "wonderdrug" and the last resort for lupus remission with an oral medicine. It's called methotrexate and is a chemotherapy drug that you take orally. In fact, I will take 8 pills (all at one time) once a week. After 13 rounds of chemotherapy and other torture treatments :-), I'd love to switch to a pill form that I could take long-term, so I'm ready and I'm hoping this works...Dr. Cohen says not to get my hopes up, though. Based on my response to all the other drugs of this type (Imuran, CellCept, etc.), he feels my chances of it working are "minimal." But it's worth a try while we're waiting for my next scheduled chemo in October. It has some major side effects -- but I didn't feel too bad after doing my first dose today...just dizzy and sick to my stomach. And I was prescribed Zofran, my drug of choice for nausea. I also have to take folic acid as it depletes your iron and I'm already anemic. And I'm starting trazadone for the fibromyalgia. So, I have a whole new medication regiment...just counted and I take 24 pills a day, except on Sunday when I do the methotrexate -- then I take 32. Not too bad, at one point I was taking almost 70 per day. Sadly, though, I can't drink any alcohol on the methotrexate...because it causes liver damage and mine is already damaged from the lupus. It's not like I'm a big drinker, but I do like the occasional margarita when I'm out with the girls or a shot of Jameson when I'm at home with Bill. Dr. Cohen told me I can have 4 alcoholic drinks per year. So, I guess I need to save those for special occasions.
So, have a drink for me when you want to. And I'd appreciate prayers that this new treatment will work. If you're not the praying type -- just send me happy thoughts. Bill and I prayed as I took the first dose, and we decided that it's about time for me to be cured. I've been sick for almost 3 years now. But ultimately I know that God has the plan, and that his strength is made perfect in my weakness. So, do I look forward to the illness or the treatment? No. But I'm more than just a lupus patient...I'm Michele, I'm a child of God, a wife, a mother, and my life has a purpose. I trust God to reveal it to me through my experiences one day, one hour, and sometimes one minute or one step at a time:-)
Now that I have internet...I will be back to blogging again. FaceBook is fun, but it's not the same as blogging. I feel like I can really get my thoughts and feelings out here, so it's good therapy for me. Also, I am able to let my friends and family know what is going on with my lupus and its treatment -- by sharing it one time for everyone to read at their convenience. And Bill linked the blog with FB, so my FB friends have the option of easily reading it, too.
Good Night! Or should I say Good Morning as it's past midnight. I took a very long nap after church today from about12:30-4:30, so I had too much energy in the evening. And I decided I better go with it while I had it. Because my energetic moments can be few and far between!
Much Love,
Michele
Friday, August 13, 2010
ALICE TO THE RESCUE...
Hi Friends,
Well...it's not like I meant to take a month off from blogging, but a lot has been going on. First of all, we're in the middle of a move. We didn't seem to fit in well to the "planned community" of RiverPark here in Oxnard -- or into townhouse life in general. So, since it will probably take about 3 years to do all the building out on our land (which Bill has termed "Rancho Suave" -- don't ask :-) we are moving into a more permananent but still temporary rental house closer to the kids' high school in Oxnard. I did the count and in our almost 20 years of marriage, this will be our 12th move...so hopefully the move out to the land will be our 13th and our last -- unless the kids have to drag us off to a nursing home at some point!!!
So, anyway right now we're in the midst of moving chaos. Bill and the kids (and Brandon, who stayed with us and helped for 3 weeks) have all the furniture and most of our stuff in the new house. All that we have left here are kitchen and bathroom stuff and our beds and a few boxes. We are planning to be into the next house this Sunday...and then we have until next Sunday to be completely out of this house and have it cleaned out.
As far as the lupus goes -- I haven't had the best month. I found it funny that my last blog entry was entitled "Uncooperative Kidneys," because they're still not being cooperative. If only my lupus would stop attacking my own organs. We all have to share one body -- Why can't we all just get along??? But for now that's not happening -- I did one course of Levaquin and the infection seemed to go away...but after 8 days it was back (or possibly never gone:-( So, I'm back on the Levaquin again -- and the infection is being really stubborn. Really hoping it goes away before this second course of oral antibiotics is done. Otherwise I will have to switch to IV antibiotics through the port...which isn't a pleasant thought -- as my port has been less than cooperative, too. Won't get into that today, though:-( I am seeing Dr. Cohen on Monday, so we can have the kidney chat then...as well as other discussions.
I went to UCLA with Bill on Wednesday to see Dr. Karpouzas, who is my head doctor and oversees my treatment plan. He is the Chief of Rheumatology at UCLA, and you can look at it in one of two ways. 1. You're pretty special if you get assigned to him. OR 2. You're really messed up if you get assigned to him. But seriously, he's a really great guy who's Greek -- very informed about this type of lupus and also very caring.
So, he really clarified what was going on for me. Basically I have the rarest form of lupus, because only 1% of all lupus patients have it affect the brain. All of you have very healthy hard brains, but I have a mushy brain, which leaks B cell subsets. The chemotherapy (Rituxan) we are currently doing penetrates my soft mushy brain, but it is just a short-term fix. That means we are basically just putting out the fire and my count goes up, but then the B cells deplete again and the lupus never goes into remission. Also, the Rituxan can only be done for 8 rounds (each round is 2times). This type of chemo is strong and I get a dose much higher than cancer patients. I've done 2 rounds of this type so far. So after 3 years -- I have yet to go into remission and that's what needs to happen.
And as he further explained -- 99% of the people with lupus affecting the brain respond to one of the treatments I've already had. So that's makes me 1% of the 1%, I guess...or as they like to say, "a very complicated case." Maybe one of my engineering friends can figure out the math. We've done Imuran and CellCept which are supposed to keep the lupus from attacking my brain and vital organs. No success. We did 9 rounds of Cytoxan (chemo) and only short-term success. We've also done tons of steroids both (orally and IV)and bunches of meds for the symptoms. So, apparently there is only one more oral drug to try -- methotrexate. And if that doesn't work, I'm out of options for now and will keep on doing the Rituxan until my 8 rounds are up. Instead of viewing it as my last option, I will remember that there are always new experimental drugs and studies coming out. Worse case scenario -- they can always do a stem cell transplant. Dr. Karpouzas also suggested a new drug Effexor for my fibromyalgia, so I'll probably try that too. It really is the least of my problems (fibro is another one of my many immune issues, but it is not life-threatening, just causes pain) --but Dr. Karpouzas has a lofty goal of keeping me pain-free.
As far as the current chemo goes -- I get to decide how often to do it. Ideally it would be done every 6 months. But right now it's been less than 3 1/2 months and my symptoms are already back. So, I could do it now, and I'd likely be in less pain and my nervous system would be better -- so I could drive and be more functional. But the problem with that is after chemo, I go from an overactive immune system (which attacks me) to no immune system (where I get pneumonia and all kind of infections that I can't fight off). Lucky me, they are letting me draw the line. So, I think I've decided to try the Methotrexate and hope it works while waiting until the regularly scheduled chemo in October. I'm on the highest dose of Percocet allowed for pain, but it's better than morphine or dilaudid which I've taken in the past. They would prescribe it if I want it, but I don't. I've been banned from driving after failing my neurological testing. Plus I don't like to take narcotics and drive. Safer for all of you other drivers on the road, but it's hard for me to lose that freedom. Luckily for me, Bill and Annie seem happy to cart me around. And while I am not able to physically do much around the house or get out much -- I am here for my kids. I believe that the most important thing I can do for my kids is to be here and love them...and I've learned how to do that from bed.
Now don't get me wrong...sometimes I still feel sorry for myself. For example, this morning I had dental appointments scheduled for me, Nate and Molly. It sounds silly, but I was determined to go even with my kidney infection because I haven't made it to the dentist for almost 2 years. And, I guess I just wanted to be like a "normal" person who could make dental appointments and take their kids (even if Bill was going to drop us off and pick us up). So, I got up this morning and got in the shower. The antibiotics make me very sick to my stomach and my kidneys were giving me serious back pain. After throwing up in the shower, it became painfully obvious even to oblivous me that I should not be sitting in a dental chair today. So I woke up my poor husband and he switched his morning meeting to afternoon and took the kids and stayed with them. And since he has an appointment with the same dentist in 2 weeks, he switched appointments with me. And maybe I'll be better then. Or not, we'll see. And today...Bill talked me down as I cried about not being able to go to the dentist. He very rationally told me that I shouldn't feel bad about having a disease. It is what it is. So, I snuggled back in with Isaac who was so cute in my bed with his favorite stuffed animal (a dog named Butterscotch), took some more Percocet, and spent the rest of the day in bed.
Because Bill spent the morning at the dentist with the kids, he worked until 7 p.m. He did call and ask if I wanted to go to a social with his coworkers after work. I laughed hysterically, because when he left he told me not to get out of bed.
And the story for today ends with me calling and sending a FaceBook S.O.S. to Annie, who we call Alice -- because she's the Alice to our Brady Bunch. I was feeling lonely hanging out in bed while moving went on around me...but life goes on. Like a true friend, she came not only to keep me company but with McDonald's for dinner. In fact, she even beat Bill home tonight. And she brought her laptop and wireless connection for me to do this blog on. Our internet is disconnected for the move...and I can do e-mail and FaceBook on my phone, but it's not the same as blogging for me. This serves as not only information for my friends and family -- but as a way for me to look back on my experiences in my loopy life. The mushy brain and narcotics don't help my memory much.
I think my movers have called it quits for the night. Molly and Annie are on a chocolate run, so I can't wait to see what they bring back. And Bill brought me a bottle of Jameson, which is always good. He actually stopped and got 2 big bottles of soda, too. Because you all know how much I love my soda. But sadly, the sodas fell off his motorcycle somewhere between the 99cents store and the liquor store. So, he learned his lesson and brought the liquor home in his jacket...I told him he was lucky he didn't cause an accident with the rolling soda bottles on the freeway OR get pulled over by a cop with Jameson in his jacket. Even though the bottle wasn't opened, it could have made for an interesting pat-down and discussion about how his sick wife needs her alcohol:-)
Annie is going to spend the night on one of our mattresses. We have great accomodations here. I'm leaving to eat chocolate and take more percocet. I will have internet at the new house as of the 20th, so I will get back to blogging then if not sooner. Thank you, thank you, thank you for all your prayers and good wishes. I love you all.
Shel
Well...it's not like I meant to take a month off from blogging, but a lot has been going on. First of all, we're in the middle of a move. We didn't seem to fit in well to the "planned community" of RiverPark here in Oxnard -- or into townhouse life in general. So, since it will probably take about 3 years to do all the building out on our land (which Bill has termed "Rancho Suave" -- don't ask :-) we are moving into a more permananent but still temporary rental house closer to the kids' high school in Oxnard. I did the count and in our almost 20 years of marriage, this will be our 12th move...so hopefully the move out to the land will be our 13th and our last -- unless the kids have to drag us off to a nursing home at some point!!!
So, anyway right now we're in the midst of moving chaos. Bill and the kids (and Brandon, who stayed with us and helped for 3 weeks) have all the furniture and most of our stuff in the new house. All that we have left here are kitchen and bathroom stuff and our beds and a few boxes. We are planning to be into the next house this Sunday...and then we have until next Sunday to be completely out of this house and have it cleaned out.
As far as the lupus goes -- I haven't had the best month. I found it funny that my last blog entry was entitled "Uncooperative Kidneys," because they're still not being cooperative. If only my lupus would stop attacking my own organs. We all have to share one body -- Why can't we all just get along??? But for now that's not happening -- I did one course of Levaquin and the infection seemed to go away...but after 8 days it was back (or possibly never gone:-( So, I'm back on the Levaquin again -- and the infection is being really stubborn. Really hoping it goes away before this second course of oral antibiotics is done. Otherwise I will have to switch to IV antibiotics through the port...which isn't a pleasant thought -- as my port has been less than cooperative, too. Won't get into that today, though:-( I am seeing Dr. Cohen on Monday, so we can have the kidney chat then...as well as other discussions.
I went to UCLA with Bill on Wednesday to see Dr. Karpouzas, who is my head doctor and oversees my treatment plan. He is the Chief of Rheumatology at UCLA, and you can look at it in one of two ways. 1. You're pretty special if you get assigned to him. OR 2. You're really messed up if you get assigned to him. But seriously, he's a really great guy who's Greek -- very informed about this type of lupus and also very caring.
So, he really clarified what was going on for me. Basically I have the rarest form of lupus, because only 1% of all lupus patients have it affect the brain. All of you have very healthy hard brains, but I have a mushy brain, which leaks B cell subsets. The chemotherapy (Rituxan) we are currently doing penetrates my soft mushy brain, but it is just a short-term fix. That means we are basically just putting out the fire and my count goes up, but then the B cells deplete again and the lupus never goes into remission. Also, the Rituxan can only be done for 8 rounds (each round is 2times). This type of chemo is strong and I get a dose much higher than cancer patients. I've done 2 rounds of this type so far. So after 3 years -- I have yet to go into remission and that's what needs to happen.
And as he further explained -- 99% of the people with lupus affecting the brain respond to one of the treatments I've already had. So that's makes me 1% of the 1%, I guess...or as they like to say, "a very complicated case." Maybe one of my engineering friends can figure out the math. We've done Imuran and CellCept which are supposed to keep the lupus from attacking my brain and vital organs. No success. We did 9 rounds of Cytoxan (chemo) and only short-term success. We've also done tons of steroids both (orally and IV)and bunches of meds for the symptoms. So, apparently there is only one more oral drug to try -- methotrexate. And if that doesn't work, I'm out of options for now and will keep on doing the Rituxan until my 8 rounds are up. Instead of viewing it as my last option, I will remember that there are always new experimental drugs and studies coming out. Worse case scenario -- they can always do a stem cell transplant. Dr. Karpouzas also suggested a new drug Effexor for my fibromyalgia, so I'll probably try that too. It really is the least of my problems (fibro is another one of my many immune issues, but it is not life-threatening, just causes pain) --but Dr. Karpouzas has a lofty goal of keeping me pain-free.
As far as the current chemo goes -- I get to decide how often to do it. Ideally it would be done every 6 months. But right now it's been less than 3 1/2 months and my symptoms are already back. So, I could do it now, and I'd likely be in less pain and my nervous system would be better -- so I could drive and be more functional. But the problem with that is after chemo, I go from an overactive immune system (which attacks me) to no immune system (where I get pneumonia and all kind of infections that I can't fight off). Lucky me, they are letting me draw the line. So, I think I've decided to try the Methotrexate and hope it works while waiting until the regularly scheduled chemo in October. I'm on the highest dose of Percocet allowed for pain, but it's better than morphine or dilaudid which I've taken in the past. They would prescribe it if I want it, but I don't. I've been banned from driving after failing my neurological testing. Plus I don't like to take narcotics and drive. Safer for all of you other drivers on the road, but it's hard for me to lose that freedom. Luckily for me, Bill and Annie seem happy to cart me around. And while I am not able to physically do much around the house or get out much -- I am here for my kids. I believe that the most important thing I can do for my kids is to be here and love them...and I've learned how to do that from bed.
Now don't get me wrong...sometimes I still feel sorry for myself. For example, this morning I had dental appointments scheduled for me, Nate and Molly. It sounds silly, but I was determined to go even with my kidney infection because I haven't made it to the dentist for almost 2 years. And, I guess I just wanted to be like a "normal" person who could make dental appointments and take their kids (even if Bill was going to drop us off and pick us up). So, I got up this morning and got in the shower. The antibiotics make me very sick to my stomach and my kidneys were giving me serious back pain. After throwing up in the shower, it became painfully obvious even to oblivous me that I should not be sitting in a dental chair today. So I woke up my poor husband and he switched his morning meeting to afternoon and took the kids and stayed with them. And since he has an appointment with the same dentist in 2 weeks, he switched appointments with me. And maybe I'll be better then. Or not, we'll see. And today...Bill talked me down as I cried about not being able to go to the dentist. He very rationally told me that I shouldn't feel bad about having a disease. It is what it is. So, I snuggled back in with Isaac who was so cute in my bed with his favorite stuffed animal (a dog named Butterscotch), took some more Percocet, and spent the rest of the day in bed.
Because Bill spent the morning at the dentist with the kids, he worked until 7 p.m. He did call and ask if I wanted to go to a social with his coworkers after work. I laughed hysterically, because when he left he told me not to get out of bed.
And the story for today ends with me calling and sending a FaceBook S.O.S. to Annie, who we call Alice -- because she's the Alice to our Brady Bunch. I was feeling lonely hanging out in bed while moving went on around me...but life goes on. Like a true friend, she came not only to keep me company but with McDonald's for dinner. In fact, she even beat Bill home tonight. And she brought her laptop and wireless connection for me to do this blog on. Our internet is disconnected for the move...and I can do e-mail and FaceBook on my phone, but it's not the same as blogging for me. This serves as not only information for my friends and family -- but as a way for me to look back on my experiences in my loopy life. The mushy brain and narcotics don't help my memory much.
I think my movers have called it quits for the night. Molly and Annie are on a chocolate run, so I can't wait to see what they bring back. And Bill brought me a bottle of Jameson, which is always good. He actually stopped and got 2 big bottles of soda, too. Because you all know how much I love my soda. But sadly, the sodas fell off his motorcycle somewhere between the 99cents store and the liquor store. So, he learned his lesson and brought the liquor home in his jacket...I told him he was lucky he didn't cause an accident with the rolling soda bottles on the freeway OR get pulled over by a cop with Jameson in his jacket. Even though the bottle wasn't opened, it could have made for an interesting pat-down and discussion about how his sick wife needs her alcohol:-)
Annie is going to spend the night on one of our mattresses. We have great accomodations here. I'm leaving to eat chocolate and take more percocet. I will have internet at the new house as of the 20th, so I will get back to blogging then if not sooner. Thank you, thank you, thank you for all your prayers and good wishes. I love you all.
Shel
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