HAPPY NEW YEAR'S EVE !!!

Hi Friends!

I don't know if I'll make it until midnight tonight, but the kids are excited about staying up late! We had a nice day today. I woke everyone up at 10 a.m. -- and they thought that was too early!
We got ready and went to the Carnegie Art Museum here in Oxnard. It is a nice little museum and was not busy at all. In fact, we were the only people there. We had the entire museum to ourselves. The kids all got really into it -- especially Molly and Isaac who were sketching their own pictures based on what they saw.

The museum was in a sort of town square -- so we stopped at Starbuck's afterwards for coffee and hot chocolate. We then headed home as the cleaners were coming at 3 p.m.

It was very nice to have the house cleaned, and Nate made out well. The cleaners found his missing GameBoy lodged in between Cameron's mattress and bedframe. Nate had searched just about everywhere for it.

In other exciting news, Cameron's Pokemon game for the Wii came today. It was delayed in the mail, so he received a picture of it for Christmas. The kids were thrilled and they've been playing that since we got home.

I did some organizing of my homeschooling materials. Bill went to Simi Valley. He needed to go to a bank there for the Boy Scouts. He was still the only one authorized to sign checks, and they needed him to change that since he and Cam aren't doing Scouts anymore.

Bill just got home and is making a Mexican casserole for dinner. I just reserved tickets for the Getty Villa in Malibu for 10 a.m. on Saturday. Cameron went last year with his English class, and he's been begging to take the rest of his family. I had promised him we'd go over summer, but that didn't work out due to my chemo. So, now we can finally keep our promise to him.

I'll blog again next year:-)
2010 has got to be better than 2009 was for me!!!

Much Love,
Michele

HELLO!!!

Hi Friends!

I seem to be blogging every-other day these days. I'm doing my best, but Christmas vacation just seems to be dashing by very quickly.

Yesterday, I drove into Thousand Oaks and got my bloodwork orders from Dr. Cohen. Then I went to the lab to get it done. Luckily, they were able to find a vein on the first try -- very unusual for me. I was really missing that PICC line and the home nurses though. It was much nicer when they came to my house, took blood from the PICC line (no pain!), and then delivered it to the lab at St. John's in Oxnard for me. Oh well, those were the good old days, I guess. Instead, I was receiving phone calls from Cam that the boys were fighting. He and Molly had to separate them. Molly took Nate to the park, and Cam and Isaac hung out at home. I paid them all with Slurpees and cookies from 7-11.

My entire body hurts after 3 days of working out with the Wii Fit, so I decided to take the day off. I'm also having a lot of trouble with my feet swelling -- doesn't seem to matter if I exercise or not. By about 4p.m. they have swollen up hugely. I already take Lasix and may need to increase my dosage. We'll see what my doctor says -- I have an appointment to see Dr. Cohen in 2 weeks -- that's when the bloodtest results should be back. So, either we'll have an answer or I'll start on a stimulant to keep me awake during the day.

Bill brought home Chinese food for dinner tonight, so everyone was happy. The kids and I just finished cleaning up their rooms. We had to make a path for the cleaners who are coming tomorrow. They didn't come last week because they come on Fridays and that was Christmas. So, by this week the house really needs a cleaning!

Bill took tomorrow off. We're planning to go to the Carnegie Art Museum here in Oxnard on a little field trip. I think it's time to drag the kids away from the Wii.

Much Love,
Michele

I NEED RITALIN TO KEEP UP WITH THE KIDS...

Hi Friends!

Seriously -- I didn't get around to blogging yesterday, because I slept most of the day. So, this morning I called Dr. Cohen. I'm going in for bloodwork tomorrow. Then if nothing weird is going on in the bloodwork, which might explain the non-stop fatigue -- he'll prescribe a stimulant to keep me awake during the day. It's not like I want to be on another drug, but sleeping all the time leaves me little time to spend with my family. I had to laugh because Nate's latest poem started with, "My mom likes to nap, and when I was little I sat on her lap." I don't want to be remembered as a Mom who slept all the time.

Today we all got up around 10 a.m. -- gotta love time off from school:-} Poor Bill had already left for work. We spent most of the day playing on the Wii Fit. I am doing yoga and I think I may have overdone it today as I am already sore. They also have some fun balance games on it for me -- challenging due to the damage done by lupus to my nervous system. After I did the balance tests -- the Wii told me that my balance age was 54! I tried not to take it personally since I have a disability. However, if I'm ever stopped by the police -- I'll need a breathalizer test to prove I'm not drunk.

I'm up in Isaac and Nate's room typing this on Isaac's netbook once again. He's taking a bath, and he doesn't like to be upstairs by himself. It's also convenient for me to be up here as I'm working on laundry and the laundry room is across the hall. In fact, I can hear the dryer buzzing at me...so I'll sign off and get going on the clean clothes. It tends to pile up around here. But the kids are good with helping me do it. They just need friendly reminders or they would wait until there was no clean clothes left.

Much Love,
Michele

ON THE SECOND DAY OF CHRISTMAS,,,

My true loves gave to me ... a nice, relaxing day at home!!!

Hi Friends!

We didn't do much today. We slept in this morning, and the kids spent the day playing with their new Christmas gifts. And I'm still playing with Isaac's netbook while laying in bed. The boys are hanging out in my room with me and watching TV. Cam and Molly are upstairs playing Pokemon GameBy games together.

Bill made stuffed porkchops with mashed potatoes and corn for dinner. After dinner we watched the newest Star Trek movie together. Bill and I had seen it in the movie theater when it came out. But the kids hadn't seen it yet. So, he bought it along with some other movies and Star Trek episodes for our new blue ray player.

Other than that -- nothing new to report. I'm still too tired -- slept in late--took a long afternoon nap--and I'm ready to go to bed soon.

We'll talk more tomorrow.
Much Love,
Michele

MERRY CHRISTMAS!!!

Hi Friends!!!



I hope you all are having a great day and spending it with those you truly love! I am laying in bed and typing this on Isaac's new netbook computer. It's really cool, and he is being very nice and insisting on sharing it with me when I want to blog. I know -- who would think a 7 year old needs a laptop computer? But Isaac is not your typical 7 year old, and Bill got a good deal on it during the black Friday sales.

We've had a pleasant Christmas Eve and Christmas Day here at the Blands. Yesterday morning I was awakened by Doctor Cohen's phone call. I can always count on him to call before any holiday to check on my health. I told him I was doing OK, but I am still struggling with fatigue. We talked a bit, and I'm supposed to call him on Monday if it's still not better. Then we can formulate a plan -- we've talked about me taking Ritalin before in order to counteract the sleepiness during the day. Dr. Cohen had thought my excessive sleepiness was due to the recent pneumonia, and he speculated that I was still recovering from that. But it is also a symptom of my lupus and fibromyalgia as well as a side effect of many of the drugs I take. So, who knows -- but I don't have much time available to me when I'm sleeping 12-15 hours per night. And I still wake up feeling tired.

Well, enough of that sob story. After talking with my doctor early Thursday morning, I went back to sleep until much later. At 12:15 I had an appointment at the DMV to get my permanent handicapped placard and license plates. So, Bill and I drove over there. The placard was no trouble, but in order to get handicapped plates for the truck, we needed to add my name to the registration and title. We had forgotten the title at home. So, since it wasn't busy -- the DMV employee suggested we just run home and get it. I asked if Bill could come back alone, and she said that would be fine. She showed me where to sign the forms. But of course when Bill came back several hours later, that employee was gone, and the new one said we needed to wait 3 days after the placard was issued so that I was "in the system" as handicapped. It was really annoying because when we get the new license plates we must "surrender" the old ones. So, Bill had already taken off the license plates and then had to put them back on. Gotta love the DMV!

I then came home and collected the children who wanted to go to the 99 cents store. We found a bunch of treasures. The kids bought a bunch of stuff for each other, and I bought some goodies for the kids' stockings. It was kind of wild and crazy with the 5 of us shopping and hiding things in the cart under my jacket. Bill thought it was funny when I came home $93 later as my budget was supposed to be $30. Theoretically, he told me it should be easy to see how much you've spent at the dollar store where everything is the same price. But, I really didn't care and was just glad to survive the experience.

We then wrapped up the presents. And took some time to admire Bill's new Mac computer. He got a big bonus at work for being such a good employee, so he decided to spend it on a better computer for us. The kids now get our old one, which will be good as their old one had died. I just need to learn how to use a Mac!

Bill went and did some last minute shopping at Fry's. And the kids and I did our chores and got ready for church. He picked us up at 6:15 with chicken from El Pollo Loco. So we ate dinner in the truck while we drove to Simi Valley for 7:00 church. After church we went to the Christmas house. There is a house in Simi Valley that is elaborately decorated for the holidays. And it's our Christmas Eve tradition to go there.

By the time we got home it was almost 10 p.m., but the little boys were all jazzed up about Christmas and they had a hard time falling asleep. When we finally got them down, Cameron played Santa Claus and ate all the cookies and put the presents under the tree. He even left notes from Santa. Molly was planning to help, but she fell asleep before the boys and decided to stay asleep.

We lucked out after a late night, and nobody woke up until 10 a.m. At that point, Isaac woke up and started a chain reaction. He woke up Nate, who woke up Molly, who woke up Cam, and then they all came downstairs to wake us up. We gained about another half-hour of sleep by telling them to check out their stockings. But by 10:30 we were up and opening presents. It was largely a Wii Christmas this year. The price finally came down enough for us to buy one. And then, of course, we needed the games and the controllers, etc. Bill even got me a Wii Fit, so I'm hoping to use if for exercise for me and PE for the kids.

So, of course, the kids were occupied for the rest of the day with their presents. We went out for dinner, but sadly the HomeTown Buffet was closed, so we had to settle for Denny's. The kids were happy with it, though, and they ate and ate.

Right now we're back home. The kids are playing MarioKart on the WII. In a few minutes, we're going to watch one of Cam's Christmas movies.

Happy Holidays!
Much Love,
Michele

THE EVE OF CHRISTMAS EVE...

Hi Friends!

I know...it's been a few days since I blogged. I've been taking advantage of the kids' Christmas Break. They've been happy and entertaining themselves. So, I have been resting up -- sleeping or just hanging out in bed for most of the days. I'm still really fatigued.

Today I did that until about 2 p.m. Then Cameron nicely volunteered to take Nate to the park where he was meeting some friends. Molly and Isaac kindly volunteered to be my cleaning helpers and picked up around the house with me. We don't have the cleaners coming this week as they usually come on Fridays. They offered to come on Dec. 24th in the morning, but I told them to just skip this week. I certainly don't want to get up early on Christmas Eve -- not even for a clean house. The day will be busy enough as it is.

For the rest of the day, the kids and I made Christmas cookies. First we made chocolate chunk cookies, and then we worked on Christmas cut-out sugar cookies. We had fun, and now everyone is relaxing except Bill. He is working on a present that needs to be assembled/gotten ready for Isaac. I finished wrapping presents yesterday. So, I think we're pretty set for the holidays.

I'll let you know what's up tomorrow on Christmas Eve ...

Much Love,
Michele

6 DAYS UNTIL CHRISTMAS!!!

Hi Friends!

Where has the time gone? I woke up this morning to Isaac making a Christmas countdown poster! He is very excited!

So, yesterday -- the cleaners came in the morning. We also did our homeschooling earlier than usual. I knew I would need to take a nap in the afternoon in order to not fall asleep on my date with Bill in the evening. I almost always fall asleep in the movies.

I have started picking up Cameron from school each day. That way Bill can be home by 5 p.m. And since he makes dinner every night, it works out better to have him home earlier. It's nice for me to have 15-20 minutes to chat with Cam each day, too. He was especially excited yesterday as it was his last day of school before Christmas Break. The homeschoolers follow his schedule too -- However, I do have some field trips (educational) planned for all of us during the 2 week break. We are going to the Getty Museum (in L.A.) and to the Carnegie Art Museum and an Auto Museum (both here in Oxnard).

So, after picking up Cameron from school yesterday, I took a bath and got all beautified. We met up with some of Bill's friends at J.J. Brewsky's for dinner and drinks. We then went to see Avatar on opening night at the movie theater. We saw it in IMAX. While it wouldn't have been my first choice for movies, it actually was pretty good. And the kids did a good job at home with Cam and Molly babysitting the 2 boys.

Today I slept in. Bill had to go in for 2 MRIs this morning, so hopefully they will give his neurologist whatever answers she is looking for. She had changed his diagnosis from Multiple Sclerosis to Parkinson's, but now she's not so sure. We'll see what happens. I'm not sure how much more sickness this family can handle!

When Bill got home at around 1 p.m., I took Nate and Molly to the park. They made some new friends and I did my walking. I am desperately trying to lose my Prednisone weight and puffiness.

Bill and the kids are going to finish hanging our Christmas lights tonight and grill out for dinner. I want to work on some laundry and household chores. So, I guess there's nothing more that's particularly exciting to blog about.

Have a great night, and I'll try to blog more tomorrow!

Much Love,
Michele

THIS IS MY TEMPORARY HOME...AND MY TEMPORARY BODY:-)

Hi Friends!

I never got back to blogging after Monday. I had good days on Monday and Tuesday. And then Wednesday and Thursday (today) were difficult...really struggling with the fatigue and headaches associated with my lupus. So, I'm just taking it day by day, minute by minute, etc. Yesterday the kids did their homeschooling themselves. And today, I managed to be a part of it, but I didn't do much else. When I feel really bad, I mostly just try to focus on the kids and what's really important. Sometimes I feel like a real burden to Bill, but when we discussed it this past weekend -- he said, "So what if you are?" I like his attitude.

Carrie Underwood has a new song out that I heard on my way to pick up Cameron from school. This is the chorus:

This is our temporary home.
It's not where we belong.
Windows and rooms that we're passing through,
This is just a stop on the way to where we're going.
I'm not afraid because I know,
This is our temporary home.

It made me cry because it really hit me right where I am. Life seems really hard at times. But thank God this is only my temporary home and my temporary body! I definitely can't wait to trade in this body for my heavenly one.

Cameron has been having many parties at school, because tomorrow is his last day of school before Christmas break. So, we've been doing a lot of baking -- he keeps volunteering us to bring brownies, which is easy enough to do! The homeschoolers have been baking for him, so he is pretty spoiled.

Tomorrow night Bill and I are going out for dinner and a movie with some of his friends from work. We're going to see Avatar. I'm looking forward to going out on a "date" with Bill. It's been a while since we've gone out together. I promised the kids that they could rent a PPV movie and eat pizza while we were gone, so Cam and Molly are more than happy to babysit.

I'll try to blog more tomorrow. The kids' computer is down, so I have a line of children waiting to play Wizards 101 (their game of choice) on this computer.

Much Love,
Michele

CURRENT LIST OF MEDS...

Hi Friends!

It's me again. People have been asking what type of meds I take. So, I thought I'd give you my daily med list.

1. Boniva (monthly for osteoporosis due to treatment with steroids)
2. Clonazepam (for anxiety caused by my illness)
3. Nexium ( to treat my ulcer)
4. Norvasc (for Raynaud's--poor circulation in hands/feet)
5. Oxybutynin (for bladder problems from recurrent UTIs)
6. Pristiq (anti-depressant -- lupus is depressing, need I say more?)
7. Plaquenil (for lupus)
8. Savella (for fibromyalgia)
9. Vitamin D (because I'm not allowed to see the sun)
10. Calcium (for above-mentioned osteoporosis)
11. Prednisone (steroid for lupus)
12. Macrobid (antibiotic to keep UTIs away)
13. Ambien (sleeping pill)
14. Biotin (for lupus skin/hair issues)
15. Potassium (my levels are always low)
16. Vitamin B (levels always low, too.)
17. Propranolol ( for fast heartrate)
18. Lasix (for swelling at joints)
19. Zofran (for nausea from all these meds)
20. Tramadol (for headaches -- also can be caused by these meds)
21. Vicodin (when Tramadol doesn't work for headaches)
22. Omega 3 (for heart issues)
23. Vitamin E (for heart issues)

And I'll be starting CellCept (anti-rejection drug, experimental for lupus to keep my immune system in check) soon...just a day in the life of me... my current diagnoses are: Central Nervous System Lupus, Fibromyalgia, Arthritis, Osteoporosis, Depression/Anxiety (I wonder why?!), Chronic Urinary/Kidney Infections, Chronic Headaches, Raynaud's Syndrome, Ulcer.

What I try to do is focus on the positive. I'm glad there are meds out there to fix me, even if it takes SO MANY!!!

Much Love,
Michele

BYE BYE PICC LINE!!!

Hi Friends!

It's been a busy few days and everytime I had a chance to blog, someone else was on the computer. So, I'll try to catch you up on Friday through Monday.

On Friday we had an early appointment (8 a.m.) with Cam's guidance counselor. We happily found out that he hadn't failed psychology. His grades were all B's and C's. I was impressed due to the fact that he's taking college prep classes this year. He probably could have gotten A's and B's, because he had a lot of missing work. He needs to develop a little more iniative in working with and being sure of what the teacher's expectations are. Friday just seemed to fly by with homeschooling and household chores. And it rained most of the day. The kids were getting a bit stir-crazy.

On Saturday it continued to rain. Bill went out grocery and Christmas shopping. And he returned home just in time for us to drive to Simi Valley for church. We went to the 5:30 p.m. service at StoneBridge. After church we ate dinner at Pizzatopia, which has a really tasty pizza buffet. When we returned home we unpacked all the groceries (we only had time to put away the cold stuff before leaving), and I wrapped up the Christmas gifts that Bill had purchased for the kids. I think we're almost done being Santa!

On Sunday, we had a restful day and just hung out at home. It wasn't raining, so I was able to take the kids for a much needed outing to the park. We watched Land of the Lost on PPV, and we all enjoyed the time together as a family.

This morning we were all tired, but Bill and Cameron went off to school and work, and the rest of us accomplished our homeschooling and chores. We were done by 3 p.m. when my nurse came.

My nurse had called in the morning and asked which doctor to call in order to get permission to remove my PICC line. I told her I had talked with Dr. Cohen and he had agreed I could keep it in until January. The reason I wanted it in was that if I get any type of infection, I will need IV antibiotics. With a PICC line, I can be treated at home rather than the hospital. I would like to avoid Christmas at the hospital. So, she said,"OK, then I won't bother him."

And then, imagine my surprise when she showed up at 3 p.m., announcing she was here to remove my PICC line. She told me not to worry -- she had called Dr. Cohen and convinced him it was OK. I was not pleased and explained to her why. I probably could have fought it and called Dr. Cohen myself, but I let her take it out. I will pray for no infections, especially as I start CellCept next week. The good news is that I can now take a shower or bath without wrapping my arm in Saran Wrap. And my arm was very irritated at the PICC line site -- so this will give it an opportunity to rest. I've decided on this plan -- if I get another infection and need IV antibiotics, I will get admitted to the hospital to get another port, and then I will go home for treatment. But please pray for no infections. That would be the better scenario!

Bill got home late tonight. He is currently making dinner. After dinner I am going to take that previously mentioned Saran Wrap-free long bath.

Much Love,
Michele

IT'S RAINING, IT'S POURING ... BILL IS SNORING!

Hi Friends!

It's been a busy week, but I wanted to blog tonight before going to bed. I wanted to let you all know how well I am doing!

Monday - Wednesday we stayed busy with our homeschooling and regular household routines. Wednesday night Bill and I took Cameron to his high school for a meeting. (Molly babysat the little boys.) It was at 6:30 p.m. and for Juniors and Seniors to make sure they were on track for graduation. Bill got stuck late at work, so Cam and I went by ourselves and he was going to meet us there. Well, the Spanish meeting was in the large gymnasium, and the English meeting was in a small activity room. Partway through the meeting I got a phonecall (kept my phone on vibrate). I left the room to take the call from Bill who was in the gymnasium and a bit confused. We sent him in the right direction and he found us. Cameron told him, "That's what happens when you are not prompt!" It was pretty funny.

Tomorrow morning at 8 a.m., Molly will again watch the boys. Bill and I made an appointment with Cameron's individual counselor. Cameron will be there, too. Through some mistake with our new address, progress reports and reports cards were mailed out in October and November, but we never received them. And Cam thinks he flunked his psychology class, so we need to check into that. We also need to see when they are next administering the California Exit Exam. He's passed the English part, but he still needs to pass the Math part. And, finally -- his school locks all bathroom doors in the afternoon, and Cameron has weak bladder control. So, we need to find a way for him to use the restroom in the afternoon. We'll let you know how that goes. Bill and I will go with Cameron to school in the A.M. as it begins at 8 a.m.

Today I had an appointment with my rheumatologist, Dr. Cohen. He is very pleased that the 2 doses of Rituxan seemed to put my lupus into remission. We will continue that treatment (2 doses of chemo) every 6-8 months. I am still really fatigued, and he says that's because I am still recovering from the pneumonia. So, I will be starting CellCept soon, but not yet. CellCept is used for people who have had organ transplants to prevent rejection. It's an experimental treatment with lupus, but it basically should work the same way and keep my over-active immune system in check. But Dr. Cohen wrote the RX and wants me to wait until the fatigue goes away and I feel normal. Then I am supposed to call him and we'll get it started.

I also get to keep my PICC line 6 more weeks. Then they'll take it out assuming they won't be putting as many toxins into my body. At that point, chances for infections should go down! And other good news -- Dr. Cohen is designing and setting up his own infusion room in his office. He showed it to me today, and it looks great. He's got a big TV and 4 large, black, leather, massaging recliners. How nice to get an infusion in a spa chair. So, I'm looking forward to doing my future treatments there.

Dr. Cohen's 2 main concerns are -- my heart rate is way too high. It's 120 beats per minute when resting. So, I have to go back on the Propranolol to slow it down. He feels my heart was really affected during the last flare at the hospital. Also, my osteoporosis is getting worse due to all the steroids they've been pumping into me. I've been warned not to be too physical with my brittle bones. And soon, I'll be moving to IV drugs rather than Boniva for the osteoporosis.

So, there is where I stand, Dr. Cohen pointed out that it's been 6-8 weeks since Rituxan and I'm still doing well. Before that, he was pulsing me with the highdose steroids monthly. That's very encouraging:-)

Much Love,
Michele

P.S. -- Today Dr. Cohen changed my temporary handicapped parking pass to a permanent one. I guess he figures I will continue to be his most challenging/interesting patient.

CHRISTMAS SHOPPING !!!

Hi Friends!

Sorry that I haven't blogged for a while. Don't worry, I haven't developed any new illnesses. I just got busy with homeschooling and trying to get back into exercising. I'm tapering off the Prednisone, so I am trying to speed up my weight loss. Most of it is puffy water weight -- but exercising (walking for me) seems to help it go away faster. I am now only taking 5 mg of Prednisone daily -- much better than the 60 mg daily I've taken in the past. And when I get the high-dose steroids by IV -- it's 1 gram per day for three days.

Saturday was my vegging out day. I didn't do much at all. I slept in and then just hung out with the kids around the house. Bill did some errands and went grocery shopping. We did some on-line Christmas shopping and took advantage of some cyber sales.

Today we had a coupon for 20% off your entire purchase (including sale items) for JC Penney's. So, Molly and I went to the mall and spent the day there. She had a bunch of allowance money ($45) saved up, so she bought a stylish new outfit. And I took the Christmas lists the kids provided me with, and I did most of our Christmas shopping. I think we have just a few things left to buy now.

The mall was not as bad as I expected. I wore my face mask to protect myself and my compromised immune system from all the bugs/germs. We've had some more outbreaks of the swine flu here. And Bill pointed out that he didn't want me back in the hospital after a mall trip. So I got some odd looks, buy we had a good time. And I felt really good to be out shopping like a "normal" Mom. Last year I was so sick, so we just gave the kids cash. This year at least I had enought energy to plan/buy things. However, I want you to know that I'm only energetic enough to buy for the kids this year. So, please don't feel like you need to buy us anything. Your prayers are more than enough.

It's late and I should go to bed. Tomorrow Bill has 2 doctor's appointments and I have my home health nurse coming at 3 p.m. to do PICC line care and bloodwork. And we still need to homeschool and do our normal routines. It's supposed to rain this week, so that will be different for Southern California.

Much Love,
Michele

IT'S STARTING TO LOOK A LOT LIKE CHRISTMAS!!!

Hi Friends!

It was so chilly here in Oxnard (in the 40's) today that it really felt like winter --even here in Southern California. I wore a winter coat, hat, scarf, and gloves when I took the kids to the park and did my walking. Oh well -- I probably look less ridiculous with a scarf instead of a surgical mask over my face.

We had an average day around here. Trust me, at this point -- normal is good. We all did our usual stuff -- school, work, etc. Bill received word that he is getting an award at work that comes with a bonus. So, that should be nice for medical bills and Christmas.

Other than that, I've got nothing ... but I'm feeling happy again... and that's a good thing :-)

Much Love,
Michele

TIRED TUESDAY!!!

Hi Friends!

I guess I was wiped out today after my busy day yesterday. I wish I had more stamina and less fatigue -- but the doctors tell me that it can take up to 6 months to recover from that aspect of pneumonia. So, I slept in later than planned, but all of my home-schoolers were very cooperative and we breezed through our schoolwork.

It's cold here, and I actually have the fireplace and the heater going. It's definitely a different climate in Oxnard. It's still warm in Simi Valley, I'm sure.

I didn't do much that's blog-worthy today -- homeschooled, did some household chores, etc. The kids went to the park without me today, because I wasn't feeling up to it.

After school, Bill dropped off Cameron and then went back to work. He went directly from work to his last Boy Scout meeting in Simi Valley. He is supposed to be passing off his Committee Chairperson title onto someone else. At least that's what he tells me.

So, I made frozen pizza for dinner. While it was cooking -- We had one injury today. Nate and Isaac were wrestling (you know, that favorite activity for boys), and somehow Isaac's head hit the wall. He ended up with a big, bruised goose egg on his forehead. We iced it down a bit, but it still looks nasty.

Well, since Bill is not here -- I'm off to supervise baths/showers and bedtime.

Good Night!

Much Love,
Michele

BYE BYE PNEUMONIA!!!

Hi Friends!

Well, it's official -- the pneumonia is gone and Dr. Nathan is pleased with my progress. So, now I'm getting bumped back from the infectious disease doctor to Dr. Cohen, my main doctor -- the rheumatologist. We'll see what new torturing (oh, I meant to say, curing) therapies he has in store for me on the 10th. Bill was laughing at me for purposely staggering the appointments. He thought I should see Dr. Cohen right away this week as I'm cured. I told him I need 10 days to be "normal" before jumping on the lupus roller coaster again. My home health nurse was here today to change my PICC dressing and check me over. She is not happy with my blood pressure (too low) and heartbeat (it's odd) -- so I know we'll be doing some med changes. Oh well, too much good news in one day might give me a big head :-)

Today was busy and I had trouble going to sleep last night, so I am tired. We homeschooled today and even made it to the park for PE and my walking. Besides the 2 medical appointments I had, we got caught up on dishes and laundry. I was behind on both, so it took most of the day and the kids' help to catch up! And Bill picked up Cameron, but then he had to go back to work and stay late. So, I didn't have my chef to cook dinner. Luckily, the kids were content to microwave instant food for themselves.

Hopefully, I'll get a better night's sleep tonight and tomorrow will be a bit slower-paced.

Much Love,
Michele

IT'S A SMALL WORLD...LIFE'S A JOURNEY...B+

Hi Friends...

God's really been talking to me today, and no-- I'm not on any narcotics these days. I just finished watching Extreme Home Makeover. I don't usually watch it, because generally while I think the families are deserving -- the houses are just a bit over-the-top for me. But anyway, I watched it today, and they were building a new house for a boy with leukemia. He had just finished chemo treatments and had a very compromised immune sytem. (Sound familiar?) Unfortunately, their house was full of mold. Because of all his medical bills, the family couldn't afford to renovate the house. And the mold was life-threatening to this boy. Well, they got their new mold-free house and the boy (named Cameron -- sound familiar?) started a foundation to help the hospital thats helping him. His foundation and his attitude comes from a motto -- It's B+ (positive) which is his bloodtype. I will strive to take the advice of a little boy when it comes to my illness.

And then, there's my Cameron ... and the "It's a Small World!" story. We have a new psychiatrist treating Cam and Nate since we moved. When Dr. Kumar (who now is in Agoura Hills) was going through Cam's medical history, Bill told him about all his hospitalizations. Remember when Cam was really little (5-6 years old) and he was hospitalized at Fairfax Psychiatric Hospital in Washington state? Well, guess who the attending physician was there at that time -- you guessed it, Dr. Rajiv Kumar -- the current doctor we're seeing. Bill pulled out Cameron's medical records and the discharge summary and sure enough, Dr. Kumar was the one who signed it. I was floored by that and by how far Cameron has come. I remember wondering how we would manage Cameron's disabilities (he's autistic and bipolar), but day by day we did-- and now he is the most wonderful teenager I know. So, I'll strive to remember Cameron and Nate's journeys with their illnesses. I know what a strong family we have and that tells me...I can make it, too :)

And finally, Bill was unpacking the last of the boxes in the garage today, and he found one of my journey magnets. Today, I saw it on the frig. If you remember, it went with necklaces spelling out the letters of the word journey, which I gave to my kids and to my chemo buddies (Shirlene, Annie, and Judi). Dr. Cohen has commented often on my strength and my HUGE support system (which brings the strength, I believe) and I am truly blessed.

Even if you didn't receive one of the letters (there were only 7), I feel blessed to have you on my team. I often reflect on the fact that people all over the country are praying for me. As the card says --

Join me ... I've sent you one of the seven letters of the word journey as a simple reminder that you and six others will form the circle of support I will need. Knowing, as I travel the road ahead, I will never be alone. I was touched when I saw this again -- just thinking that God and all my friends/family have my back. For example, when we went to church last night, I was talking to Pastor Jeff about how Bill has been trained to give me IVs. And we discussed that it's a real comfort to know that when we said those wedding vows almost 20 years ago ("in sickness or in health"), we meant them. I know that I can count on Bill no matter what! That's why I have the lion (bold protector) with Bill's signature tattoo on my back.

As far as today goes... we slept in for our last day of Thanksgiving break. I think that tomorrow will be a challenge getting up for school. I took the kids to the park and Bill even brought Bingo. I'm losing some puffiness and weight now that I'm walking again, but I look ridiculous with the face mask, sunglasses, and hat that I have to wear. But I can't chance anymore infections!!! Kind of looks like a cross between Michael Jackson and a bank robber.

I also drove over to Walgreen's to buy a special Christmas present for Molly. Again, I can't reveal that now, because she often reads or does my blog for me. But I know she's going to love it. We did some chores around the house. Nate and Isaac love getting their socks wet and soapy and skating around on the tile to clean it. So, they had fun and the floors are shiny. WIN for them, WIN for me! Bill and Molly and Isaac went grocery shopping and Bill is currently putting the food away. The kids are taking baths/showers and heading off to bed. And I'm waiting for my turn in the soaking tub. Even though we have 3 bathrooms with 3 showers and 2 tubs, the big soaking tub is everyone's favorite.

Tomorrow will be a busy day. I am determined to get in a good day of homeschooling. I also have 2 medical appointments. At 11 a.m. Karen, my home health nurse, is coming to change the dressings on my PICC line. And at 3:45, I have an appointment with Dr. Nathan (Infectious Disease Doctor) to see if the pneumonia is finally gone. Bill has even said I can drive myself, so that he can pick up Cam from school at 3:20. I do seem to be feeling better -- both lupus and pneumonia -wise. Bill says it's just a very slow process and I'm very fragile.

Your prayers for my continued health, especially no more pneumonia are much appreciated. If all goes well, when I meet with Dr. Cohen on December 10th, I will be able to start CellCept. That is an oral medication (in a way just like the chemo) which should keep my over-active immune system in check. I'll be happy to take it for the rest of my life, especially if it means less IV steroids and $37,000 chemo sessions. Anyway, what's a few more pills a day? I counted today and I currently take 42 pills a day. That's 26 different types but some are done more than once a day. And again, my sweet husband orders, picks up, and dispenses all these drugs to me. Of course, that's not including pain pills, sleeping pills, etc in the 42 number -- I have those pills to take at my discretion.

Well, I will go and see if the bathtub is free. Time to Saran Wrap my PICC line. The kids get a kick out of helping me to do that. I can't do it myself as the line is on my upper left arm. We have to tightly wrap Saran Wrap around the arm and line to keep it protected from the water.

More tomorrow....
Much Love,
Michele

CHURCH ON SATURDAY!

Hi Friends!

Today seemed to race by. I think it was because we went to bed late last night and slept in this morning. The kids slept until almost noon and Bill and I slept until almost 1 p.m. When we got up, I went to the park with Nate, Molly, and Isaac. Molly and I walked and the boys played at the park. Nate has a girlfriend, named Tajay, that he meets there daily. It's cute, but I'm keeping my eye on it. It was a beautiful day outside in Oxnard with temperatures in the high 70s. Not only was I wearing my mask and sunglasses for pollen protection, but my husband made me wear a big hat. I got so warm walking that my glasses kept steaming up.

We stayed at the park until about 3:30. Then we came home and did chores and got ready to go to 5:30 church in Simi Valley. We decided that since we're not morning people -- maybe we should try Saturday night service. I hadn't been to church for weeks because of the pneumonia, so it was nice to go and worship and see old friends, too. We hit a Carl's Jr. drive-through on the way home for dinner, which was a treat for the kids. We got home around 7:30 p.m. and the kids are all off doing their own things. Bill is out organizing in the garage, which seems to be a never-ending project. I'm going to tinker a bit on the computer and then lay down and watch some TV.

The computer is right next to the fireplace and it feels nice and warm right now. The temperature was in the low 50s on our way home.

More tomorrow...

Much Love,
Michele

DAY AFTER THANKSGIVING !!!

Hi Friends!

Today was a busy day. Bill has really turned into me, and he left the house at 2:30 a.m. to go Christmas shopping at Best Buy. I can't say what he got, because my older children often read this blog. But he got some good deals and was happy, but very cold and tired when he arrived home around 7 a.m.

I woke the kids up at 10 a.m. as the housecleaners were coming, and they needed to pick up in their rooms, so that it would be possible for the cleaners to dust, vacuum, etc. -- you know, clear a path was needed:-) We got that and all of our chores accomplished this morning, and it is nice to have a clean house again even though it probably won't last long.

After the cleaners left and we had lunch, Bill and I left the kids at home while we did some errands. We needed to return overdue library books, go to Walgreen's, and I was desperate to get my haircut. Finding someplace that was open for haircuts today was a challenge, but I got it done. I was able to get my hair cut into a cute bob, so I'm thrilled to have enough hair to do that again. I didn't seem to lose too much from my last two rounds of Rituxan. Anyway, you can see pictures of my new haircut above. It is basically the way I used to wear my hair (pre-lupus) only I have managed to grow out my bangs.

The picture of me wearing the mask is to demonstrate what I look like when I go outside. I am feeling better, and I want to start exercising again, but I'm not taking any chances. So, after errands today when I got home -- I took Molly, Nate, and Isaac to the park. I wore the mask while I did my walking. And I bought a box of 50, so I will continue to do that to hopefully keep the pneumonia away.

I also included pictures of my birthday rings. The heart one is the one Isaac bought me. It's pink and quite lovely. And the other one is a family ring that Bill gave me. It has all of our birthstones and names listed on the ring.

Right now Bill just woke up from a nap, and he is going to make dinner. I think I'll see if he wants help.

Much Love,

Michele

HAPPY THANKSGIVING :-)

Hello Everyone,

Happy Thanksgiving! I hope you all had a wonderful day. We had a relaxing and laid-back holiday. I am finally starting to feel better with my pneumonia. I had my last IV yesterday, and so hopefully the bad stomach side-effects (strong IV antibiotics are hard on your systems) will go away soon. My cough is completely now, and I'm just feeling very run-down. But Dr. Cohen called to check on me, and he said it can take up to 6 months to completely recover from pneumonia, especially with my blood counts being off due to the chemo.

Our family chef, Bill, decided that we'd go to HomeTown Buffet for dinner today. That was very nice. We got a lot of good food (including turkey and ham) for a very low price, and we didn't have to do any work or mess up our kitchen. Everyone was very happy, and we had a good time!

I thought you might enjoy the pictures we took today. As you can see I'm very puffy again. That's due to all the high-dose steroids I've been on recently. Kind of depressing, but hopefully we can start to taper down the steroids soon.

Much Love,
Michele

BEGINNINGS OF A THANKFUL WEEK :-)

Hi Friends!

I don't want to jinx myself, but I think the pneumonia may be going away. I hope...I hope...I hope! I am on Day 13 of IV antibiotics, but this has been a very resistant infection. And, of course, since we've killed my immune system (that seemed like a good idea because lupus is caused by an over-active immune system!) I am unable to fight even the simplest germ off!

But today, Bill actually allowed me to drive the truck. I haven't done that for at least a month. Mostly, because I take a lot of pain medications. (narcotics) So, I had to suck it up today and I took Molly, Nate, and Isaac to Simi Valley for dental appointments. I hadn't made an appointment for Cameron, because I didn't realize he had this whole week off of school. So, he got to stay home and enjoy the quiet.

We made it to the dentist by 10 a.m., and we discovered all the kids have cavities. Molly and Isaac each have 3, and Nathaniel has 7. So, it'll probably take the next 6 months to get all of the fillings done. At first, I was really upset -- but then I considered how much I've been sick and/or in the hospital over the last 6 months. And I decided tooth brushing probably wasn't a priority at our house. Oh well! We'll get the kids fixed up and do better next time.

We met Annie at Carl's Jr. for lunch. It was nice to see her as we hadn't seen her for quite awhile. I have honestly been home-bound for the last few weeks.

I had to be back home to Oxnard by 2:30 p.m. because my nurse was coming to change the dressing on my PICC line and draw blood from it. That is done weekly. She arrived early and was waiting on my front porch at 2 when I got home.

After my Simi outing and then the nurse, I needed a nap. And then the kids and I did some housework and just hung around the house. I even had enough energy to Saran wrap (can't get wet!) my PICC line and take a bath. After that Bill came home and made dinner. And we're just having a quiet evening.

Much Love,
Michele

------------------------------

THINGS I'M THANKFUL FOR...

1. I'm not in the hospital.
2. My warm fireplace on a cold night.
3. My dear husband cooking dinner every night and grocery shopping weekly.
4. Itty Bitty the crazy kitty.
5. Cameron being off of school this week.
6. Molly's fashion sense.
7. Nate's energy.
8. A heart ring that Isaac spent $25 of his own allowance money on for my birthday.
9. My PICC line -- take all the blood you want, it doesn't hurt!
10. I now have enough hair that I'm considering a haircut and a real hairstyle!

SANDY SATURDAY!!!

Hi Friends!

Yesterday we completed our first full week of homeschooling, so that was cause for celebration. It's been a slow start this year with me being sick so frequently. In the evening when Bill got home, we went to Toppers for pizza and then to Dairy Queen for dessert. It was nice to get out, but my IV antibiotics are very powerful and making me somewhat sick to my stomach. So, I didn't get to enjoy it as much as everyone else.

Today Bill took Molly, Nate, and Isaac to the beach. There are some sand dunes that they love climbing up. We didn't think it would be a good idea for me to go with my pneumonia. So, Cam and I are just hanging out at home. He didn't want to go either. He's pretty funny, though. I think Bill told him to keep a close eye on me, because every few minutes he asks whether I'm OK or if I need something. But mostly we're just enjoying the quiet. I just did a breathing treatment, took a bath, and changed into some clean PJs.

Cameron is off of school for the whole next week for Thanksgiving. The home-schooled kids are now jealous, because I told them we need to do school Monday-Wednesday. Cameron says he'll help me, and I'm hoping to feel better and to be able to do some field trips. We'll see.

For now, I am going to go lay back down until the wild ones return home!
Much Love,
Michele

PNEUMONIA THAT WON'T GO AWAY :-(

Hi Friends!

Well, I went back to see Dr. Nathan yesterday. He's my infectious disease specialist. The pneumonia, of course, was resistant to the antibiotics and my compromised immune system can't seem to fight it. So -- it's still there. And I'm still hacking and having trouble breathing. So, I am now trying increased Prednisone, a new inhaler, Albuterol treatments on my home nebulizer every 6 hours, and a new IV antibiotic. This antibiotic takes 30 minutes to run each day, and Bill is able to run the IV right into my PICC line. It's not quite as easy as the previous antibiotic which took 5-10 minutes and was done with a syringe. But Bill makes a good nurse and the kids were quite impressed when the Home Health Care people delivered me an IV pole to use. Fun, fun!

I need to go to bed. But I just wanted to update you all on what's going on. Please pray that I get rid of the pneumonia in the next 7 days, because I'm afraid that I'll end up back in the hospital if I don't kick this soon!

Much Love,
Michele

P.S. -- I am starting to get hospital bills from the last stay. Guess how much my new chemo costs? The Rituxan was $37,000 per round. Thank goodness we've reached our catastrophic cap for the year. We'll be sad when the New Year comes.

HOPING THE PNEUMONIA IS GONE!!!

Hi Friends!

Tonight Bill will be giving me my last dose of IV antibiotics for the pneumonia. Then tomorrow I will go and see Dr. Nathan (the infectious disease doctor) to see if the pneumonia is gone or if I need further treatment. I am feeling better, but I'm not sure if it's completely gone. I still have a cough and my chest is not feeling completely normal yet.

But at least, I have been feeling up to home-schooling again. This weekend Bill picked us up some new sports equipment -- a soccer ball, a basketball, and tennis racquets with balls. So, we've been having a lot of fun with PE. Bill just got home from work and is making dinner. I am no longer allowed to cook or clean. I am allowed to homeschool when I feel up to it, but other than that -- I am just supposed to focus on getting better.

I'll let you know how my doctor's appointment goes tomorrow.
Much Love,
Michele

PNEUMONIA AGAIN :-(

Hi Friends!

Sorry -- again it's been awhile. But I have a good excuse. I woke up on Monday with a horrible cough and chest pain. On Tuesday, I went to see Dr. Cohen and had a chest Xray to verify that I once again have pneumonia. He sent me to see Dr. Nathan -- the infectious disease doctor who would decide what to do with me. I am getting antibiotics orally and by IV for the next 7 days. The home health care nurse was able to train Bill to give the IV antibiotics through my PICC line. So, that was convenient. Hopefully, this course of treatment will work, because I feel really crummy.

And, of course, yesterday was my 39th birthday. My family treated me like a princess even though I spent most of the day in bed. I received 2 beautiful rings. One is heart-shaped from Isaac, and one is a mother's ring with all of our birthstones on it from the rest of the family. I also received a pretty new outfit -- brown pants, rust-colored shirt and leather jacket. And Bill's parents and my parents both sent me surprises! So, thanks to everyone!

Much Love,
Michele

FAMILY WEEKEND...

Hi Friends,

I spent the weekend around home and since I'm feeling better -- I just tried not to push it too hard and make myself sick again. I have a bit of a cold going -- so I need to be careful with my lack of immune system. Usually my tendency is to do too much as soon as I start to feel better. So, I need to be careful.

Bill spent the weekend doing lots of activities with the kids -- taking them to the playgrounds, playing fussball, grilling out for dinner, etc. He also has been working on unpacking and organizing our garage. As I'm sure you can imagine -- it wasn't looking very good. After moving in, I spent the next 26 days in the hospital, so it's not like Bill had a lot of time to do this. Hopefully, this is a step into normalcy for us.

The kids and I also rented Aliens in the Attic and watched it together. We enjoyed it. And tonight we had chocolate chip pancakes with sausage for our traditional Sunday breakfast-for-dinner. Bill has taken over cooking, which is very nice for me.

I'll attempt to blog more tomorrow.

Much Love,
Michele

SORRY, IT'S BEEN A WHILE ...

Hi Friends,

Sorry it's been so long since I've blogged .. but after a month in the hospital (where we kept finding more and more wrong with me -- an ulcer, a bowel blockage, heart issues, etc.), a 3 day course of high-dose IV steroids and 2 very long chemo sessions (think 6 hours each), my body has just been wiped out. I started the week sleeping almost constantly and then moved on to puking almost constantly. Trust me, the sleeping part is better. I know that lots of you were calling, e-mailing, etc, -- but my my strength was gone. I have basically been in bed since the hospital stay 2 weeks ago. I had Bill's Mom out to to help , and then Lisa and her girls (Claire and Sarah) came for a long weekend, so the company was nice and they were a big help. I know that the kids and Bill really enjoyed having them here, but sometimes it was sad for me because I felt like I was sleeping through all the fun. Lisa says she has some cute pictures of Halloween, so I'll definitely post then when I get them. The kids all got to trick-or-treat in our new neighborhood, which is very child-friendly.

Bill was in China Lake on business from Tuesday-Thursday of this week. He came back this afternoon and I'm definitely glad he's back. There was talk of him staying another day for more business, but I really needed some TLC. The kids were doing their best -- but they are still just kids. Although Cam was really sad to miss out on 3 days of school and help out with the homeschoolers! Just kiding, of course he was thrilled.

I'll try to get back to blogging again more frequently. Please pray for my health -- specifically that my throwing up would stop, and that we could get my blood sugar levels under control. They are WAY too high.

Love,
Michele

I'M STILL HERE ...

Hi Friends!

I had a rough night last night and kept ending up on the floor without enough strength to stand up again. You know, kind of like -- "I've fallen and I can't get up!" At 9 a.m. Home Health Services came and set me up with my first examination. They cleaned and flushed my PICC line and did vitals, and that sort of thing. We were impressed with their professionalism and they will continue to come and care for me at home with home-based nursing. That should be nice.

I had an appointment at noon with Dr. Cohen today, so Bill took me into Thousand Oaks. It was decided that my lupus is in a very active flare -- not good news, but not really a surprise either! So, Dr. Cohen SOS'ed Dr. Menco, and I am starting high-dose steroids at 8:30 a.m. tomorrow morning. Other than that I am continuing on an "alarming" (according to Dr. Cohen) amount of pain meds every 3 hours and just trying to survive.

Back to bed for now. I'll let you know how tomorrow goes. Annie is coming tonight. She'll take me in for treatment for the next few days. Mom will stay here with the homeschoolers and Bill will work and take care of getting Cam to and from school. Prayers, as always, are much appreciated. I am definitely not handling all of this well. Quite frankly, I think it sucks, but I will strive to develop a better attitude by tomorrow.

Much Love,
Michele

HOME AGAIN :-)

Hi Friends!

It took most of yesterday, but I arrived home home safely yesterday from the hospital. After 26 days in the hospital, I am overjoyed to be back home again! Praise God!

I am a little overwhelmed by how BAD I feel. I am currently on more than 20 daily meds again. I am set up with a Home Health Care Services. They just called to say that I will have all needed supplies delivered today between 4- 6 p.m. They will be flushing and taking care of my PICC line. And tomorrow I have an appointment with Dr. Cohen to go over all my new meds and protocol. I'll be doing Chemo #2 of Rituxan in 2 weeks.

Today my sole goal is to take a bath. Soundslike not a big deal -- but with a PICC line and all the pain patches, etc, that are taped onto me -- It is a major production, but it will feel SO good to be clean~

Bill's Mom is a big help, and the kids are just thrilled to have me home again. They are hoping to make it to the public library today and get some new books for schoolwork, too.

I'll try to blog more tomorrow. Please pray for health and sanity for all of us.

Much Love,
Michele

One Day at a Time

I stayed with Michele last night at the hospital due to her colonoscopy which revealed a blockage and it is likely the cause of her pain. Her endoscopy today revealed a small ulcer in the remote part of her stomach.

So, her kidney's have healed, her bladder has healed, her liver problem was medication related and fixed by discontinuing the offending meds. Her GI blockage will be treated with meds. Dr. Sanders who performed the procedure likened it to concrete and was totally surprised by it because he was expecting something more serious because of the level of pain Michele was experiencing. I laugh at it because it meant that Michele was full of sh** all the time and nobody new it :) Seriously, the hospital staff thought that she had the opposite problem and kept trying to solidify her stool. I just have to laugh!

One more thing remains to be done before she is cleared by Dr. Cohen, her lead physician, to have the Rituxan which is supposed to put the lupus back into remission. A cardiologist needs to explain why her resting heart rate is 100-140 beats per minute. We hope that will be explained tomorrow so that she can get the wonder drug going by the end of the week.

Again, we could use all the prayer you can muster...

-Bill

Discharged for less than 24 hours and back again

Hi Everyone,

I am blogging for Michele. She wants you to know what is happening. I'll work on a way for her to blog from her hospital room in the near future.

Well, she came home overnight last Wednesday and then went right back into the hospital on Thursday. We suspect that they pushed the discharge due to insurance limitations. But we had no problem readmitting her because her Lead Doctor, Cohen, was very concerned for her and made it all work out.

Her kidneys seem to have healed but there is concern that the medications she took to kill the infection have also damaged her GI tract. She gets the joy of an endoscopy/colonoscopy Tuesday morning to find out the extent of the damage.

Due to her infection, the Lupus has majorly flared up again (so much for the remission last month). If she is cleared of all infection, she will be taking a different chemotherapy drug called Rituxan. She is having a PICC line put in in Tuesday morning. A peripherally inserted central catheter (PICC or PIC line) is a form of intravenous access that can be used for a prolonged period of time (e.g. for long chemotherapy regimens, extended antibiotic therapy, or total parenteral nutrition). A PICC is inserted in a peripheral vein, such as the cephalic vein, basilic vein, or brachial vein and then advanced through increasingly larger veins, toward the heart until the tip rests in the distal superior vena cava or cavoatrial junction. Dr. Cohen believes that this medication will not have as dangerous side effects as the Cytoxin she previously took. For one thing, it doesn't have "toxin" in its name.

So, she needs your prayers, phone calls, and visits. She is very scared and home sick. I can't be with her every minute of every day but with the help of our friends and family, someone can be there to talk to her and make her feel better most of the time.

-Bill

In the Hospital Again...

Well, Michele is back in the hospital. She did finish her final round of chemo but her compromised immune system couldn't fight a kidney infection. She is responding slowly to treatment at Los Robles Hospital in Thousand Oaks. She will probably be there all week. Your prayers are greatly appreciated.

-Bill

I'M DONE WITH CHEMO, I'M DONE WITH CHEMO :-)

Hi Friends,

It's been a busy week, and I guess I haven't got around to blogging. So, let me catch you up on what we've been doing. Bill went to China Lake for work on Monday and Tuesday. Both days he caught a flight on base to and from there. It's a 20 minute flight from one base to the other! He left early in the morning and got home late both nights, leaving me on Cam's school drop-off and pick-up.

Monday we did school with the highlight being watching the Left Behind II: Tribulation Force. We've been learning about the Book of Revelation in Bible class. We also took Itty Bitty Kitty to get her shots on Monday.

Tuesday we had the day from HELL at Western Dental here in Oxnard. I had made appointments for cleanings/check-ups for Molly and Isaac at 9:30 a.m. After 3 hours of waiting, we had only gotten xrays done, and the kids had been laying in dental chairs for over an hour waiting for a dentist to see them. We finally just left without even exams or cleanings. It was truly horrible. I called my dentist in Simi Valley and made appointments with him for all the kids next month. I'd rather drive to Simi, visit friends, and have a nice dentist -- instead of dealing with such a long wait and terrible customer service.

The good thing about Tuesday was that we hired a cleaning service. Starting in October, we will have weekly cleaners coming on Mondays. And that will make me VERY happy.

Annie came last night after dinner and brought me a Big Gulp. I hadn't had one since the last time she was here. So, that was very nice. She stayed with the kids this morning and took Cameron to school this morning while Bill took me to UCLA.

I had an 8:30 appointment with Dr. Karpouzas this morning. We had to leave our house at 6:45, which was way too early! My appointment went very well. Dr. Karpouzas OK'd me to stop chemo after the 9 cycles that I've already done. He is going to manage my lupus with CellCept (oral medication) instead to keep the CNS lupus from attacking my organs again. I'll be on it for at least one year and we'll have to do bloodwork every 2 weeks to make sure my blood counts are OK. He was happy that my fibromyalgia meds are working well and that the steroids controlled my last flare. But he doesn't want to keep using pulse steroids on me, since they're so hard on the body. According to him, most people with lupus have a flare about every 16 months -- but it generally doesn't attack organs. So, with the Cytoxan done and on the CellCept, we should be able to control the beast a bit better. I feel confident in his plan. I will continue to see him every 3 months and Dr. Cohen every 2-4 weeks. I definitely have a good team.

By the time Bill and I got back from UCLA, it was almost noon. Annie and I took the kids to McDonald's for lunch, and then we went to a Children's Museum here in town. There were a lot of hands-on exhibits and the kids had a very good time. We stayed all afternoon until it was time to pick up Cameron from school.

After picking up Cam from school and getting home at about 4 p.m. -- I was very tired, so I lay down for about an hour. I got up at 5 p.m. in order to break up a fight between Nate and Isaac. We ate left-overs for dinner and have just been hanging out. The kids are thrilled to have Annie here, because we all have missed her.

Bill is in Simi Valley. He drove there after work to give the new owners of the Fletcher house their keys. And then he was going to his Men's Group. So, hopefully he'll be home soon. Right now the kids are off to bed, and I think I'll be following soon. I have a bladder infection. YUCK! Just when I thought I was doing so well -- my bladder rebels! Oh well! My doctors let me keep meds on hand for that as I get them so frequently.

Have a great night :-)

Much Love,
Michele

SIMI SUNDAY...

Hi Friends ...

We got up this morning at 9 a.m., so that we could leave for church by 10 a.m. We went to the 11:00 service at our former church in Simi Valley -- it's now called Stonebridge, used to be Simi Prez. Bill and I drove separately. It was a big accomplishment for me to be able to drive again, and I realized while driving there -- I now have no pain at all! Praise God!

We enjoyed the church service and touched base with some friends there. After church, we drove over to Burger King for lunch. The kids are now big fans of Burger King "doublestackers," so they chose the restaurant. After BK, we split up. Bill took Nate and Molly. They stopped at Sandy's house to deliver her Bat Mitzvah gift. They also went to Target for meds and the Do-It-Center for pool supplies. I took Cam and Isaac to GameStop where they spent some of their allowance money.

We then met up at our old house in Simi. I guess, technically, it's still our house until the new owner signs his papers. Latest estimate -- he should close towards the end of this week.

Bill cut up the old jacuzzi and set it out for the trash company to pick up. He also had to spend most of the day treating the pool, which had turned majorly green. We had the electricity turned off a week ago, thinking that the new owner would be moving in. So, since that didn't happen -- we ended up with the heat and no electricity to run the pump, causing a very green pool.

Simi is VERY hot right now. The kids and I said hi to some of our former neighbors -- and then we headed home. We ended up back in Oxnard at around 3:30 p.m. The heat really wiped me out, so I just relaxed and lay around for the rest of the day. The kids went to the park for a bit, but other than that -- we didn't do much.

We ate left-overs for dinner, and we are hoping that Bill makes it home soon. Unfortunately, he forgot the keys for our trailer. So, he'll go back one more time this week to pick that up. I know I've said this before, but that should be the last time at that house! We even left the keys on the table for the new owner. Bill will probably go back on Wednesday night-- because he is going to go to his Men's Group meeting on Wednesday. The guys requested he come one last time so that they could say goodbye.

The kids and I took the time to say a prayer while at the Simi house, thanking God for our memories made there. And we asked God to bless the new owner there as well as our family at our new house. It was a sweet moment!

More tomorrow...

Much Love,
Michele

BY YOUR SIDE...

Hi Friends ...

Well, I got a lot accomplished around the house today. And I went for a really long walk with Molly. All the while I was listening to music on my phone. Bill had downloaded a bunch of music onto my phone last year when I was really sick, and I've added a few songs. But I had never really spent a day listening to them all. It was nice and really put me in a good mood. Bill grilled out tonight -- fish, hotdogs, hamburgers and a bunch of side items. I'm getting spoiled with him doing so much cooking :-)

Anyway -- the song that really spoke to me today was "By Your Side," done by Tenth Avenue North. My friend Annie introduced me to this song a few months back, but it never spoke to me like it did today. When I heard it, I just felt very blessed to be in this world with a loving God.
So, I want to share the lyrics with you and strongly encourage you to download it yourself if you don't already have/know it.

Love,
Michele

--------------------

Why are you striving these days?
Why are you trying to earn grace?
Why are you crying?
Let me lift up your face,
Just don't turn away.

Why are you looking for love?
Why are your still searching as if I'm not enough?
To where will you go, child?
Tell me where will you run,
To where will you run?

And I'll be by your side,
Wherever you fall,
In the dead of night,
Whenever you call.
And please don't fight,
These hands that are holding you.
My hands are holding you.

Look at these hands and my side.
They swallowed the grave on that night.
When I drank the world's sin,
So I could carry you in,
And give you life.
I want to give you life.

And I'll be by your side,
Wherever you fall,
In the dead of night,
Whenever you call.
And please don't fight,
These hands that are holding you.
My hands are holding you.

And I'll be by your side,
Wherever you fall,
In the dead of night,
Whenever you call.
And please don't fight,
These hands that are holding you.
My hands are holding you.

Cause, I, I love you.
I want you to know,
That, I, I love you.
I'll never let go.

And I'll be by your side,
Wherever you fall,
In the dead of night,
Whenever you call.
And please don't fight,
These hands that are holding you.
My hands are holding you.

And I'll be by your side,
Wherever you fall,
In the dead of night,
Whenever you call.
And please don't fight,
These hands that are holding you.
My hands are holding you.

***How often do we fight the very hands that are holding us? It's my prayer tonight that you will take a minute and feel the very hands that are holding YOU.
Love, Michele XOXO

SUPER SATURDAY!!!

Hi Friends,

I am feeling really good today. Bill is working on some unpacking and organizing. The kids are all happy and doing their own things. I am going to work a little bit around the house today. Nate and Isaac need some help tidying up their enormous room. And I started doing laundry last night, but I ended up tired and quitting in the middle. So, hopefully I can get caught up on laundry today.

Bill and I slept in -- although he was up before me. After I got up, we ran a few errands. We needed to go to Bank of America and close our accounts there, because we now use USAA for all of our banking. Since the Bank of America accounts were joint, it required both of us driving there together to do it. So, we left the kids at home, and we had a nice little date! He also took me over to where the Public Library is. It's really close, but it looks really small. I'll check it out with the kids this week. Now that I'm feeling better, I'm looking forward to driving again and exploring our new area.

And although Annie had found me the nearest 7-11, Bill was on a quest to show me that other closer gas stations/convenience stores have good fountain drinks. So, we stopped at a nearby Circle K to check out his theory. I'm partially convinced -- It's not as good as the 7-11 Big Gulp -- not as many flavors to choose from. But I was able to put some lemon slurpee at the bottom of my large Diet Coke. It turned out pretty well, and I have to say the store was clean and products cheaper than at 7-11. It's right around the corner from our new house, so I MAY start to frequent it. We'll see!

I need to sign off and do my weekly meds. Bill must feel my mind has come back, because I'm now allowed to do the weekly med containers for me, Nate, and Cam. I'm sure he's relieved to get at least one thing off his plate.

The temperature is beautiful here in Oxnard -- In the 70s at the warmest part of the day and an ocean breeze all the time. Last night we even had the fireplace going. I miss all my friends from Simi, but I don't miss the Simi Valley weather. In Simi Valley, this is the hottest part of the year. Temperatures are so hot and it's like living in a dust bowl! Not a great place for someone with hot flashes and who's supposed to stay out of the sun.

I'll blog again soon. Tomorrow we are going to brave the Simi heat and drive into our old church at Simi Prez (oops, I mean Stonebridge -- forgot about the name change :-) for service. Maybe we'll see some of you there. I think we're aiming for the 11 a.m. service.

Much Love,
Michele

FAMILY FRIDAY ...

Hi Friends,

I never got around to blogging yesterday, as I had a very upset stomach. I'm not sure what's going on -- whether it's flu-like, ulcer-like, or what? But I stopped taking some of the meds that are hard on my stomach today -- namely Naproxen, which I was taking for pain. Not so necessary anymore and my stomach seems to be feeling better. I had a slight fever this morning. That's actually a good sign for me as it means my immune system is coming back from the chemo. When I had pneumonia, my temp was 97, because I was so severely immune-compromised. My body couldn't fight anything off on its own (except me and my own VIP organs).

Anyway, I was up really late last night with the stomach problems and puking. So, I took it easy today. Bill was home as it's his day off, so he worked with the kids. And then we all watched the first Left Behind movie together and compared it to the Book of Revelation and other references in the Bible. It was really cool!

This afternoon after a bit more schoolwork, Bill dropped Molly, Isaac, and I off at Smart and Final to do some grocery shopping. He and Nate went to pick up Cameron from school, and then they all met up with us to finish up at the grocery store. It's been a LONG time since I've taken the entire family with me grocery shopping. And it was really quite fun! We had a good time with it.

After getting home, we unloaded groceries, did some chores, and then Bill took Nate and Isaac out to spend their allowance. Nate bought a video game, and Isaac didn't find anything, so he's saving his money for DisneyLand on Nate's birthday (Oct. 2nd). They got home and Bill made supper -- we had pizza and mozarella sticks.

Other news -- we had a major ant invasion in our kitchen today. I spent a lot of time eradicating the poor ant colony and trying to keep Itty Bitty Kitty out of the ant poison. There were a few ants when we moved in, but I think my family (with 4 messy and always hungry kids) was an ant colony's dream. Hopefully, the ant traps and poison work, because I don't like ants under my kitchen sink.

Right now I have the fireplace going, the kids are watching TV, and Bill is installing a ceiling fan in the living room. The landlords provided two for us when we moved in, and Bill had not had a chance to install them yet.

This weekend Bill is going to Simi Valley to treat the pool with chemicals. Just talked with Judi and it had turned really green because we had the electricity turned off. We also have 2 large items ( a jacuzzi and a desk) that need to be hauled to the dump. And lucky us, this weekend brings Simi's "Free Dump Day." The buyer had a few glitches with his financing, and he basically came up $4,000 short. But we've been assured that he will finalize the closing in the next week. We value the time spent in the Simi house and friends made there, but we're anxious to close that chapter in our lives. And it just seems to be dragging on. I mean really, we've been out of our old house and into this one as of the 1st. We definitely could've throttled back had we known the closing would take SO long.

Other than that, I don't have any big plans for the weekend. Just hanging out with the kids!

Much Love,
Michele

A GOOD WEDNESDAY ...

Hi Friends!

Today was a good day, and we seem to have settled into a homeschool routine. We all got our work done, and we were over at the park by 1:30 p.m. I am feeling so good, and Molly and I walked laps around the park while the boys played.

Bill picked up Cameron after school and delivered him home. It's really nice to have him so close to where we live. He ended up going back to work until later in the day. I did some major organizing in the dining room today, and I even made dinner for everyone.

We had a nice family dinner, and then Bill and several of the kids went grocery shopping for a few things. Right now he's unpacking some more STUFF ... and I'm going to put the kids to bed.

So, I guess it's been a good, average, normal day ... I feel blessed!

Much Love,
Michele

TUESDAYS WITH CAMERON ...

Hi Friends!

I finally fell asleep last night by 3 a.m. I didn't even hear Cam and Bill leave for work and school this morning. But I did wake up on-schedule for homeschooling by 9 a.m.

We started today with a movie and then a trip to the park to get our energy out! I had a lot of energy myself -- so maybe it was for me? -- and did some laps around the park while the kids played. And I surprised the kids by riding Nate's bike home. They thought it was just hilarious that I could ride a kid's bike. I did get a few odd looks from my new neighbors :-0 Oh Well!!!

We came home and continued our schooling, and the day seemed to go rather uneventfully! But in a good way! Everyone did a lot of reading today, and that's always my favorite. Molly, in particular, has some great literature selections, so I get to live vicariously through her.

I was doing pretty well with no crying -- until Bill got stuck at work, leaving Cameron stranded at school for almost an hour. I didn't do well with that, and I had no way to pick Cam up. Luckily, Mom was more traumatized than Cameron! And he did finally make it home.

I spent this evening working in the living room, which is in desperate need of clean-up, organizing, etc. I am hoping to hire a housecleaner this week, but I will need to at least clear a path for her! I ended up ordering pizza for dinner, because Bill had to go to Simi for a Scout meeting. It seems Cam is able to quit Scouts, but Bill can't quit until December when his replacement for Committee Chair takes over. He's only going to one meeting a month, but still it seems ridiculous to me! Anyway, Bill was going to make Cam go to one last meeting today -- because it was Court of Honor and he was getting his last awards/badges. But Cameron really didn't want to go, so I vetoed it, making his day and even scoring a hug from my non-affectionate teenager!

In another crying jag, it seems Cam started "Tuesdays with Morrie" in his Film Adaptation class today. He had me crying like a baby at dinner tonight as we were discussing life and death. So, I told him that I titled my blog for the day in his honor. Poor child -- he'll be really glad when I stop randomly crying!

Other than that -- same old stuff is going on here. I've already taken my Ambien for the night in hopes of falling to sleep before 3 a.m. tonight. Wish me luck!

Much Love,
Michele

MOLLY'S SIAMESE CAT REPORT ...

Hi Friends,

After Molly saw what fun the boys had posting their fishing stories, she has decided to post a report she's been working on. It's about Siamese cats ...

Love,
Michele
------------------------------------------------------------------------------------------------

THE SIAMESE CAT, by Molly Michele Bland...

The Siamese cat is one of my favorite breeds. It has lovely, blue almond eyes and a short, silky coat. Combine this beauty, an intelligient mind, and a unique personality -- It would be a great pet! The Siamese cat was originally from Thailand (or it was known as Siam in the late eighteen hundreds).

The Siam People decided to give England a gift, " the Siamese cat." They wanted to show the world what this cat could do. And after a while, the Siamese cat started to be in English cat shows in the early twentieth century. I think this cat would be great in cat shows!

This breed of cat has many shapes and many colors, like brown or black or bluish-white bodies. They can even have a pinkish body and gray feet. This is delicate color. This cat may have long legs, but it has a very good balance!

This ancient breed, which is perhaps the oldest of all cats, is able to communicate like no other. They are able to speak with their voices and body language.

In conclusion, this cat is good in shows, but is also very lovely. I would love to have a cat like that, but I already have one in my mind. They are a "People's cat" for they love to be on your lap, on your bed, at the table and in your heart!

CAN'T SLEEP...

Hi Friends,

I hope you liked the blog with Nate and Isaac's "fish stories" from earlier. The pictures are cute, aren't they?

I'm up and apparently still on the steroid roller coaster. I cannot fall asleep even though I've taken an Ambien -- which is a sleeping pill. Maybe I won't remember this in the morning. Ambien is the drug that they warn about sleep-walking, sleep-driving, etc. while you're on it. I've never done those type of things. But I have done sleep-laundry and talked on the phone while on Ambien before. Then later you have no memory of it. So, best case scenario -- I'm really asleep right now and just sleep-typing. Highly unlikely, though?!

So, today had its ups and downs. We're adjusting to being back in the schooling routine. Surprisingly, Molly and Nate are very cooperative, but Isaac was a little spitfire today! And I didn't have much energy to deal with him. I think it turned out OK though, and Nate gave me a peptalk -- told me that Isaac was very "challenging" and "just needs to get with the routine." Molly's books came today -- Thank God!

Other than that, I just randomly cry while coming off the steroids. I cried because Bill went to get a haircut at SuperCuts and that made me miss Shirlene who usually cuts everyone's hair. I also cried when Bill brought me Diet Dr. Pepper. And then when I found out Patrick Swayze died -- Well, you would have thought he was my best friend! I cried and cried! Everything is just so EMOTIONAL when you're super-charged on steroids!

But good news -- no headache or joint pain at all. So, the steroid therapy worked as it should. And I even lost 5 more pounds rather than gaining weight in steroid hunger, because I was afraid to eat anything but veggies due to my diabetes. I have gotten really puffy -- my neck and face were swollen and hurting due to the high dosage, but Bill said I look better today. Wait a minute -- He probably is just trying to keep me from crying anymore than I already was. Smart Man!

Cam had a ton of homework tonight. But he really plugged in and worked on it from 4-7p.m., getting it all done. He's very animated about his film adaptation, pscyhology, and marine biology classes. And I was so proud, because he shared this with me after doing 30 definitions for history -- "I know the other kids can do it faster, but I wouldn't say that makes them smarter than me ... it just takes me more time." I heartily agreed. It has always been my dream that he would be excited about learning and just embrace his autism as part of the way God made him.

Thank God for the little things...

Much Love,
Michele

"FISHING DAY," BY NATE AND ISAAC

Hi Friends,

I'm feeling relatively normal and we're up and home-schooling and trying to have a "normal" today. The boys had a great time fishing yesterday, so they're dictating their experiences of yesterday for English class today. Enjoy :-)

Love,
Michele

First, we got up at 4 a.m. and took an hour-long ride to the ocean. We got on the boat. They passed out pieces of paper, and we each had a number. We used the numbers to get food.

After we got to the fishing spot, we each grabbed a fishing rod and started to fish. We caught 6 fish. They were barracuda bass. Then at the front of the boat, someone caught a fish that was 4 feet long!!! They paid $5 to get it cut up and put in a bag. We got our fish cut up, too.

There was a restaurant on the boat. I had a hamburger and a soda. I also had a Snickers bar.

Then they started to go to the harbor. Once they parked, we got out and drove home. We took our fish home, but only Dad wants to eat it. Really, we only caught it for him! I enjoyed my fishing trip, and I hope I get to go again soon.

--By Nathaniel R. Bland

We got up at 4 in the morning. We left our house and got to the place. We stopped at McDonald's for a little breakfast snack.

And then the boat arrived. We got on board and we got our numbers. Nate was #18, I was #19, and Dad was #20. Then we got to see the bait. We used live bait. We stabbed the bait on the foreheads because that's the hard spot and they can't get the hook off. So after a while, they give up and just try to swim away. Then you usually get a bite.

So after 2 hours, we arrived at the fishing area. We moved to deeper water so we could catch bigger fish. The deep water was about 2 miles deep, but the anchor could make it all the way to the bottom! But we caught all our fish in the shallow area.

When you get a fish, it pulls really hard and you have to use all your muscle. It was hard, but I liked it.

Then we ate some lunch at the restaurant on the ship. The cheeseburgers there were the best, and they had a real grill.

Then after a while we started to head home. It was a long drive home. But we got in the car and left for our real home. Mom was glad to see us! I had fun!

--by Isaac John Bland