Blogging is back...

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

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

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

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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."

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

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

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

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