A DAY OF REST!

Hi Friends!

I had a nice and quiet day today. I made it back to church, and for the first time in a long time -- I was able to stand at appropriate times during the service. For the past several months when I have made it to church -- I've not had the strength to stand and have stayed seated the whole time. This whole "life-threatening illness-thing" really makes you appreciate the small stuff.

After church we spent a quiet afternoon at home. The kids played and we watched a couple movies on TV -- Juno with the older kids and Elf with all of the kids. I concocted a new casserole out of left-over Thanksgiving foods, and it was a hit whith all the kids except Isaac. 3 out of 4 isn't too bad!

Tomorrow all of the kids go back to school. Most of them are less than thrilled! It's been fun having them home, but I'll also be glad to get back to our normal weekly routine. I have two full weeks before doing my December (#4) steroid/chemo treatment. So, I'm hoping for 2 nice weeks. I am still feeling much better, although today I am struggling with the headache again.

Much Love,
Michele

ANOTHER GOOD DAY!! 11/29/08

Hi Friends!

I am having another good day. I am enjoying a symptom-free day from lupus and I'm loving it! I am excited because tomorrow I will get back to church after missing the last 2 weekends due to chemo and its side effects.

Today, I slept until 10:30. The kids and Bill got up earlier and we had a lazy morning. Then at about noon, Nate and I went on a special outing. He has a President's project due for Social Studies and he wanted to do it on Ronald Reagan. Since the Ronald Reagan Presidential Library is here in Simi Valley, it made sense to go and do our research there.

We left at noon and stopped at Carl's Jr. for lunch. Nate is a big fan of the Double Western Cheeseburger and chili fries. And he can pack it away for someone so small! We had a nice lunch together and spent some time just talking.

Then we headed to the Library. Thank goodness for my handicapped placard, because the place was packed and they were shuttling people in on vans! But I was able to get a handicapped spot close to the entrance. And Nate and I spent several hours in the library doing his research. Then we drove back to Carl's Jr, got milkshakes, and spent the next hour there doing his rough draft, which is due on Monday. It was nice because there were no other kids there to distract him, and he worked really hard. I was proud of him!

We got back home around 5 p.m. Bill is at the "motorcycle store," according to the kids. For those of you who don't know -- he has a Harley. Molly said that she, Isaac, and Dad biked to Sycamore Park and played there while we were gone. So, sounds like they had a fun day, too! And Cameron said he "enjoyed the time alone."

Now, we're going to eat dinner -- some Thanksgiving left-overs. And then, we'll watch Ghostbusters 2.

Have a great night!
Much Love,
Michele

I FEEL GOOD! NOV. 28, 2008

Hi Friends!

I am having a great day! The kind of day where I don't even feel like I have lupus. On days like today, I am loving the chemo and what it is doing for me.

.................................................Before Chemo.................................................................After Chemo.........

We had a lazy morning and slept in .. at least Bill and I did. And Cameron, because he's a teenager. The other kids all got up early, but entertained themselves and fed themselves donuts for breakfast. Bill and I got up around 11:30 a.m. And then, I was feeling so good that I called Judi to go walking with me. We did our usual 2 mile walk down Fletcher and to the top of Seqouia and back. I am motivated to eat better and exercise. I would like to see if it's possible to lose any of my steroid weight.

Bill took the kids to Wal-Mart today. It was their "payday" with allowance, and they wanted to go spend it. I thought he was crazy to go to Wal-Mart today, and he said it was pretty wild on the day after Thanksgiving. They were gone several hours, so I had a peaceful afternoon. Molly and Cameron bought movies, Nate bought a PS2 game, and Isaac bought a Star Wars StormTrooper helmet.

Other than that, we spent the day at home. Ate Thanksgiving left-overs. Cameron bought GhostBusters 1 and 2, so we watched the 1st one as a family tonight and it was hilarious! We're going to watch the second one tomorrow.

It's late now, so I will sign off and write again tomorrow. I'm hoping I feel this good for the next while -- at least until it's chemo time again!

Much Love,
Michele

HAPPY THANKSGIVING!!! NOV. 27, 2008

Hi Friends!!!

We had some internet issues, so I didn't get to blog on Thanksgiving -- but now I want to tell you about it. We had a very nice and relaxing family day at home. I was struggling with a headache. I have what is referred to as a "lupus headache," and when it's bad...it's bad. I take Vicodin to cut the pain, and it is getting better with the chemo. I used to have to take morphine for it. But anyway, I am getting off-topic... I had a headache, but it was still a nice day, because I had the whole day free with no responsibilities.

My sweet neighbor, Terry, showed up at 10 a.m., and when I got out of the bathtub -- she was sauteeing onions and celery and stuffing my turkey. The house smelled wonderful, and she is such a cheerful and caring woman. She even had Molly cooking with her, and the kids were all enjoying talking with her while she cooked. She put Bill to work on the stuffing, so that was pretty funny, too. So, thanks Terry -- you and your cooking equalled a big hit for us on Thanksgiving!!!

We spent the day lounging around home and smelling the turkey baking. I took an afternoon nap and awoke feeling much better. I must say, my family has been really good about letting me sleep when I need to -- and I always do better when I listen to my body rather than ignore it, go figure!

We ate dinner around 5 p.m. and "Auntie Annie" came to enjoy it with us. We had quite the spread! Turkey, stuffing, pumpkin pies from Terry, Cranberry sauce from Annie, Cornbread Souffle and Green Bean Casserole from Shirlene!! All Bill and I made was the mashed potatoes and gravy. And we heated up some rolls and cookies.

We drank champagne (adults) and sparkling cider (kids) in the fancy glasses and used Grandma's fancy china. We toasted things we were thankful for. Isaac was thankful for Jesus dying on the cross and "rosing" again, Nate was thankful for PS2, Molly was thankful for her cat "Bo Bo," and Cameron was thankful for all the Thanksgiving food. Annie was thankful for becoming part of our family and Bill was thankful for his better health. I told everyone that I was just thankful to be alive, because I seriously thought earlier this year I was going to die from my lupus. We had a touching moment where everyone said they were glad I hadn't kicked the bucket either.

But seriously, at 2 points in my hospital stays -- I did question whether I'd make it. The first time was when the infectious disease doctors all came in together to tell me my spinal tap came back "abnormal," and the second was after not seeing my kids for several days. After my last hospital stay, I cried as soon as we hit Simi Valley, because I hadn't thought I'd make it home again. And then, when I saw Cameron -- I cried and cried because he hates hospitals, so I had gone over a week without seeing him.

Anyway ... the point is I am so thankful to be home. To have a correct diagnosis. To have a treatment plan, which isn't always fun, but is working. I appreciate the little things now in a way I never did before. And I have a slower pace to my life. For the first time in my life, I am a human being, not a human doing. After thinking you might die or not ever see your kids, the little things they do tend to bother you less. That's for sure!

After Thanksgiving dinner, we watched a movie. It was "War of the Worlds" -- Bill's choice, not mine. And then we all went to bed.

Hope your Thanksgiving was wonderful, too. Look for the blessings in the little things!

Much Love,
Michele

THE DAY BEFORE THANKSGIVING

Hi Friends!

I am having a pleasant day -- slowly satrting to feel better after this last round
(#3) of steroids/chemo. Today Bill was off of work and the kids were off of school. Brandon came over to hang out with us while Shirlene had to work. She turned into June Cleaver last night and showed up this morning with green bean casserole and cornbread souffle for us to have for Thanksgiving. My neighbor and friend, Terry, is in charge of our turkey, stuffing, pie, and other goodies. So, parts of the meal have been showing up all day. I feel so loved and cared for here on Fletcher St. Annie brought cranberry sauce and Judi brought me a lovely floral arrangement today. (And Yesterday Terry and Ty were grocery shopping and cooking dinner for us, too. We had meatball sandwiches -- very tasty!)

At 11 a.m. this morning I had an appointment at Dr. Menco's for bloodwork. Bill took me and Isaac and Molly came along. It was nice for them to meet the staff and see where I go to have the chemo done. My bloodwork came back "all good" -- so I am cleared to leave my bubble, but, of course, I am supposed to be careful not to overdo it. Easier said than done -- sometimes!

Annie was at home with Nate, Brandon, and Cameron, so we all met up at Carl's Jr. for lunch after the appointment. The kids needed to get out and the little ones got to play in the Play Land, which was nice as it's been raining here. After eating, Annie and I ditched Bill with the kids and went on a much-needed grocery-shopping trip to Albertson's. It was crazy at Albertson's the day before Thanksgiving, and I felt like I had ADHD with all the activity -- but Annie kept me calm and we filled up two grocery carts, so hopefully -- we're stocked up for a while.

We got home around 2 p.m. and unloaded groceries in the pouring rain. Of course, after we got everything inside -- the rain subsided. We put away groceries and then Bill and I lay down for naps. Annie nicely offered to watch the kids while we slept. That's a true friend! I napped for about an hour, and when I woke up -- Shirlene called to say she was done with work and off to get her nails done. She invited me to join her, and of course -- I said yes. So, we got our nails done. It was good to get out and do something fun. I got my nails done a lovely shade of blue, and I thoroughly freaked out my manicurist because my cuticles bled and bled and bled. I was still bleeding when I left -- it was almost funny!

Bill and Cameron are off at the Senior Center in Simi Valley feeding the old people for Thanksgiving with the other Boy Scouts. Annie just went out and got us Del Taco for dinner. We didn't feel up to cooking.

I am looking forward to a fun family Thanksgiving tomorrow. I truly have so much to be thankful for this year. I hope you feel the same way. I know that I am thankful for all of you and your prayers and support.

Much Love,
Michele

A NEW KIND OF "NORMAL"

Hi Friends!

Sorry, I missed yesterday. But I am slowly starting to feel more "normal" after my last round of chemo. At least, I am out of my PJs and have started to resume my routine at home. Isaac and Nate are off of school this week, and Cameron and Molly will be off for Thanksgiving after today.

Yesterday was Linda's funeral. She was Bill's coworker's (Scott) girlfriend. She was born in 1961, so she was only a few years older than me, and she died suddenly and unexpectedly in her sleep of pneumonia. I really feel in touch with my own mortalitiy these days. It seems like there are so many young people leaving this earth all around me. Bill went to the funeral yesterday, but I wasn't up for it. Tomorrow I will go and have my bloodwork done at Dr. Menco's. If everything comes back good, I will get the all-clear to leave my "bubble."

Other than that, I've just been puttering around the house -- very slowly. It was a bit trashed after my week off. It's OK -- makes me feel needed. Bill keeps telling me to knock off the cleaning, but I can't help myself. It's probably the steroids -- which tend to make me more obsessive than I need to be. I still feel like I've been sucked into an alternate reality. Like my life has come to a screeching halt, and everyone around me is moving at hyper speed. It's very odd!

Bill has Nate at a doctor's appointment now. Annie is picking up Cam and Molly, and then they're going to bring us all Jamba Juice. Brandon is hanging out with us today, so he is currently entertaining Isaac on PS2.

I'll write again tomorrow.
Love,
Michele

P.S. A few months ago, someone anonymously sent us pretzels in the mail for the kids. Anyone want to confess? Thank you to whomever?

What is systemic lupus erythematosus, or lupus?

Lupus is an autoimmune disease, which means that the body's natural defense system (immune system) attacks its own tissues instead of attacking foreign substances like bacteria and viruses. This causes inflammation. Inflammation causes swelling, pain, and tissue damage throughout the body. I have developed severe lupus, which have caused problems with my kidneys, lungs, and most importantly and problematic...the central nervous system on top of the usual lupus symptoms listed below. Lupus is the common name for systemic lupus erythematosus, also called SLE.

Lupus symptoms depend on what body organs are affected and how seriously they are affected.

Fatigue: Nearly all people with lupus have mild to extreme fatigue. Even mild cases of lupus cause an inability to engage in daily activities and exercise. Increased fatigue is a classic sign that a symptom flare is about to occur.

Joint and muscle pain: Most people with lupus have joint pain (arthritis) at some time. About 70% of people with lupus report that joint and muscle pain was their first sign of the disease. Joints may be red and warm, and may swell. Morning stiffness may also be felt. Lupus arthritis often occurs on both sides of the body at the same time, particularly in the wrists, small joints of the hands, elbows, knees, and ankles.

Skin problems: Most people with lupus develop skin rashes. These rashes are often an important clue to the diagnosis. In addition to the butterfly rash over the cheeks and bridge of the nose, other common skin symptoms include skin sores or flaky red spots on the arms, hands, face, neck, or back; mouth or lip sores; and a scaly, red or purple raised rash on the face, neck, scalp, ears, arms, and chest.
Sensitivity to light: Exposure to ultraviolet light (such as sunlight or tanning parlors) typically worsens the skin rash and can trigger lupus flares. Sensitivity to light affects many of those with lupus, with fair-skinned people with lupus tending to be more sensitive.

Nervous system symptoms: The majority of people with lupus develop nervous system problems, most commonly headaches, depression, or anxiety. Memory loss is less common.

Mental health problems: People with lupus may develop problems such as anxiety and depression. Such problems can be caused by lupus, the medications used to treat it, or the stress of coping with chronic illness.
Fever: Most people with lupus will sometimes have a low-grade fever related to the disease. Fever is sometimes a first sign of the disease.
Changes in weight: Many people with lupus lose weight when their disease is active (flaring).

Hair loss: People with lupus may experience periods of hair loss, either in patches or spread evenly over the head. This hair loss is usually not permanent.
Swollen glands: Many people with lupus eventually develop swollen lymph glands during a flare.

Raynaud's phenomenon: Some people with lupus have this condition and I am in that lucky "some". It affects the small vessels that supply blood to the skin and the soft tissues under the skin of the fingers and toes, causing them to turn white and/or blue or red. The skin affected will feel numb, tingly, and cold to the touch.
Inflammation of blood vessels in the skin (cutaneous vasculitis): Inflammation or bleeding from the blood vessels can lead to small or large blue spots or small reddish spots on the skin or nail beds.

Swelling of the hands and feet: Some people with lupus have kidney problems, which can prevent extra fluids from being removed from the body tissues. As fluid collects, the hands and feet may swell.

Treatments:
I take many medications to try to alleviate the symptoms. But the big ticket item is chemotherapy as described below.

Immunosuppressive medications for lupus
Examples
Generic Name Brand Name
azathioprine Imuran
cyclophosphamide Cytoxan
cyclosporine (cyclosporin A) Neoral, Sandimmune
methotrexate sodium Folex, MTX, Rheumatrex
mycophenolate mofetil CellCept

by intravenous (IV) pulse therapy (injection given monthly for 12 months)

Azathioprine, cyclophosphamide, and methotrexate sodium are also referred to as cytotoxic medications.

How It Works
Lupus (systemic lupus erythematosus, or SLE) is an autoimmune disease, in which the immune system attacks the body's own tissues as though they were foreign substances. Immunosuppressive medications, including cytotoxics, reduce inflammation and suppress the immune system. In higher doses, cytotoxic medications are also used to treat certain forms of cancer.


For even more details on lupus and its treatments go to Web MD: http://lupus.webmd.com/default.htm

A QUIET SATURDAY...

Hi Friends!
Again this will be short... still not feeling well. Haven't been out of bed at all for the last day or so. Just feeling very weak. It seems like the world is spinning by me very fast today -- if that makes any sense.

Bill is at a men's conference for church today. Cameron is at a Boy Scout camp-out, so Molly and Brandon are watching Nate and Isaac today while I rest. They're all good kids and so sweet! It's going well for them, and I hope I start to feel better soon!

Until then, Much Love,
Michele

OH, I HAD A BAD DAY..

Hi, not feeling well. Very weak and depleted. Feeling faint, sick, etc. Isaac is also sick with some kind of sinus thing and throwing up. Cam went to a Boy Scout camp out, and Nate went to Palmdale to spend the night at Brandon's. So, it'll just be 2 kids with us for Bible study. I'm not up for it, so I'll be upstairs in my "bubble." Annie has been here all day helping, and Bill just got home from work. Elizabeth Coppock from church is bringing dinner, so we're looking forward to that.

I feel that all my strength is gone today. And I'm a tad overwhelmed at the thought of doing this 9 more times. So, I need prayers for peace, strength, etc. Much Love to All!
--Michele

DAY AFTER CHEMO

Hi Friends!

Not feeling very well today. The first day after chemo is always the worst. I am dizzy and sick to my stomach. Have been sleeping on and off all day. The kids were really sweet. Isaac and Nate were off of school today, and they kept coming up to my bedroom to rub my back. Bill worked from home, and that way he was able to keep an eye on me and help me out.

I did make it to Nate and Isaac's parent-teacher conferences at Grace Brethren today. They are both doing well, and we are impressed with the loving and caring attitude of the Christian school they are now going to. It's another blessing to have come out of my illness!

Hopefully, I'll be feeling better tomorrow. For now, I'm off to bed.

Love,
Michele

P.S. -- Thanks to Heidi for the great dinner tonight!

Steroids/ Chemo Treatment #3, Day 3

Hello Friends!
This will be short as it's been a long day!
Last night I had some steroid visions/hearing voices when I tried to go to bed. I lay down to go to bed, and even though all my children were asleep -- I swore I could hear them all fighting loudly. I could hear Annie telling them to calm down. So, I felt the need to go investigate. At that point, I realized that it was 11:00p.m, and all my steroid-filled brain playing tricks on me. So, I took a Xanax and a sleeping pill, and I managed to fall asleep until 6 a.m. when it was time to get up with the kids for school.

The kids and Bill went to school and work, and Annie and I left for the oncologist's office at 8:15 a.m. We spent most of the day there. I actually managed to get a cat-nap while doing chemo, and I woke up drooling all over myself. I felt better, though. The chemo office is very nice with recliners that you can lay back in, so that is nice.

This afternoon, we stopped at AppleBee's for some comfort food, and my doctor OK'd me to have a margarita. So, that was enjoyable for me. We got our Big Gulps on the way home, and made it home in time to take delivery of the kids from school.

Today was Nate and Isaac's last day of school before Thanksgiving. Tomorrow and Friday Grace Brethren has parent-teacher conferences. And they're off all next week. So, Nate and Isaac both had Thanksgiving feasts at school today. My good friend, Judi Malone, went and played surrogate-Mom for them since I had to be at chemo. I was so happy that she was able to go and be there with them!

So, luckily, we didn't have homework for Nate and Isaac tonight, and they brought home all kinds of Thanksgiving decorations for my room to cheer me up. I spend a lot of time resting in my bedroom lately!

Cam and Molly got their homework done, and the Turk's (from our small group) brought our family dinner. It was great, especially Lilianne's famous brownies, which were still warm.

Currently Bill is at his Men's Group for church, and Annie was nice enough to find a sub to take her Catechism class at church tonight. That way she could stay with me and the kids. I am not too nauseous yet, but feeling very weak and tired -- so I will sign off now.

Much Love,
Michele

Steroids/Chemo Treatment #3: Day 2

Hi To All!

Last night I did pretty well, although I continued to be fairly dizzy and unsteady. Annie and Bill banned me from all dangerous objects after I tried to cut Nate's bread at dinner, and I ended up cutting myself.

I was able to sleep through most of the night, which was good as the steroids tend to keep you awake. When I did treatment #1 in the hospital I was up for 3 days/nights straight. But last night I went to bed at 11:30 p.m. and stayed in bed until 6 a.m. I was awake from 3-6 a.m., but elected to stay in bed and pray. One of the benefits of not sleeping is that you have much more time to spend on reflection/thinking and praying to God.

This morning we got up and helped the kids get ready for school. Bill took Cameron to Royal, Jeff and Judi took Molly (with their son Justin) to Hillside, and then Bill came back to take the boys to Grace Brethren by 8:30 before leaving for work. Annie has been staying here with us this week, and she continues to be a big help to me and the whole family.

After the family had all left, Annie and I tied up a few loose ends around the house. Then we left for my oncology appointment, which was at 9:45 in Thousand Oaks. Again, I got 1,000 grams of Solumedrol (the high-dose steroid) by IV. They give it to me very slowly as it makes me feel dizzy and sick when it goes in, so we were there for most of the morning. Dr. Menco called me in to talk to me during the treatment, as my blood sugar was very low (37) when I arrived. I have been diabetic from the steroids, so I am taking diabetes meds currently. Last month, Praise God! -- I was able to at least stop the insulin. And now, it looks like I can cut back on the Glyburide (diabetes pill) as well. So, that is good news, but I'm glad we found out how low my blood sugar was going before I went into a diabetic coma.

Today I am generally feeling better than yesterday. I have a love/hate relationship with steroids -- they make you feel strange, hungry, etc. But, they sure do work well on my lupus symptoms. My joints and head already feel much better. And so far, my kidneys seem to be functioning better. However, I am dizzy, having trouble walking, and today my speech was slurred. It's almost funny, because I feel better -- but probably look drunk. I kept my large blue IV bandage on when we went out after the doctor's visit, because at least I thought it would be apparent I was under medical care.

Annie and I ran a few errands after the treatment. We delivered some of Cameron's Boy Scout popcorn, and then we stopped at CostCo for rolls. Isaac has a Thanksgiving feast at school tomorrow, and his job is to bring dinner rolls. Then we went to Del Taco for lunch. On the way home, we stopped at 7-11 for Big Gulps in order to help us make it through the rest of the day! I am addicted to Big Gulps, but it is my only vice right now.

We got home at 2:30 and kids started arriving home from school shortly after. We made it through homework/chore time, and all the kids were very helpful. Bill came home early from work, and he is being very supportive of me through this time. The Harper's (from our small group at church) brought us dinner. It was great! Thanks Susan and Tom!

Currently Bill and Cameron are at Boy Scouts and Annie had to go teach her Catechism class at her church. Isaac, Nate, and Molly are watching a movie. At 8:00 when Isaac and Nate go to bed, I will go and lay back down again, too.

Tomorrow is my big day of steroids and chemo. I will be at the oncologist's office most of the day. They run 4 IVs -- 1st an IV saline for hydration, then another Solumedrol IV (1000 more grams of steroids), then an anti-nausea IV, and finally the chemo IV (Cytoxin). That all tends to leave me sick to my stomach and very exhausted. So, I'll probably be out of it for the next few days. I am technically supposed to stay in my "bubble" at home until my bloodwork is done in 10 days, and I get the all-clear to go be around other people again. That is because they are killing my over-active immune system, which on the flip side leaves me highly vulnerable to infections. But I've had the pneumonia, flu, and B-12 shots, and I'm taking tons of vitamins (per my doctor's orders) as well as the many meds to keep me healthy. And with 4 kids and a life, it's not always possible to stay in a "bubble" so I sometimes bend the rules.

I am hoping to have enough energy to make it to Nate/Isaac's parent-teacher conferences on Thursday and to Molly's IEP on Friday. This whole experience is a lot for the kids to deal with. But, we'll have to see how I feel -- it's one day at a time right now. I do have a wheelchair for Bill to push me around in if necessary. If I am not up for even that, Bill can go by himself.

Either I'll write tomorrow, or I will have Annie or Bill write an update when they post the pictures. I can't believe how puffy/red I look in the pictures. It's funny because everyone is telling me how much better I look now. Apparently when I was in the hospital, I looked much puffier in my face and neck. I was just too drugged out and sick to notice.

I love you all, and I appreciate all your prayers and support. It is truly overwhelming me! Today a perfect stranger from Freecyle brought me 7 chemo caps that she knit for me. And the Church Deacon's sent us a gift card for Albertson's. What a blessing because money has been tight with all the medical bills! God has really met all of our needs by the loving people he has surrounded us with.

Much Love,
Michele

Steroids/Chemo Treatment #3, Day 1

Hi Friends!

Today was my first day of treatment #3. I will be getting high-dose steroids by IV 3 days a month, and Cytoxin (chemotherapy) 1 day a month for the next year. So, 12 treatments in all! For those of you unfamiliar with my saga, I have CNS (Central Nervous System) Lupus. It's a rare form of lupus, which is an auto-immune disease. Basically, my immune system started attacking me. I was hospitalized several times due to brain and kidney damage, as well as joint damage and other issues with the lupus. After trying many medications (I'm still on over 20 different meds per day), I was told this was my last and only hope for remission. It does seems to be working, so I am hopeful for the first time since January.

So, I am still battling back-to-back kidney infections (literally). I had 2 in the last 2 weeks. I was feeling really weak and had my horrible lupus headache. My brain actually swells up, so it's no wonder it hurts. I was actually looking forward to the treatment, because the steroids usually help me feel better (less headachy at least) right away.

My friend, Annie, took me to the oncologist's office. His name is Dr. Menco and he's in Thousand Oaks, right next door to my rheumatologist Dr. Cohen. So, it works out great as they can discuss me often -- "their most interesting and complicated case." Today I had 1,000 grams of Solumedrol, a high-dose steroid by IV. It is being used to heal all the damage done to my body by the lupus. We were there for a few hours, and we had a good time talking with several other chemo patients and their spouses or friends.

The steroids give you lots of energy -- too much energy. It's kind of like having ADHD or being drunk, or a combination of the two. You can't sleep, and all you want to do is eat, and you get very slap-happy and/or over-emotional. Right now, I am feeling OK -- but dizzy and my eye-sight is very blurred. I really don't know why people do drugs, because it's not that much fun.

Of course, I was hungry for lunch after the treatment, so we went out for lunch. And then for ice cream at Cold Stone. I had "Hunka Hunka of Burning Fudge," because my motto is that chocolate makes everything better. My vertically-challenged friend, Annie, had "Who are you Calling Shortcake." We also stopped at Borders, and got the Alicia Keyes new CD, because I am convinced that I'm "SuperWoman," which is one of her new songs. I also have been obsessed with Daniel Powter's "Bad Day," which Annie got me for my birthday. In fact, Nate asked me to stop playing it this morning. He said he couldn't get it out of his head.

By the time we got home from all that, the kids were getting home from school. Annie is staying with us for the week to help me, because of course Bill has to work. I don't have the energy to take care of the kids myself, and it wouldn't be safe for me to drive right now. I'm blessed with a lot of help. Judi, my neighbor and good friend, picked up Cameron and Molly from school, and Sandy Swink (from church) picked up Nate and Isaac from school. We managed to get everyone's homework and chores done and they bathed/showered. Bill came home, and the Fields' (from our Bible study group) brought us dinner. It was great. Thanks, Ross and Carrie.

We're getting ready to put the little kids to bed, so I'll sign off now. I'll try to write more tomorrow. Day #2 (Tuesday) is more steroids, and Day #3 (Wednesday) is steroids/chemo. If I can't write, Annie has promised to be my ghost-writer. And we took some pictures today, so I'm hoping Bill or Annie can put them on the blog later. I'm not that computer-savvy! If you haven't seen me for a while, don't be alarmed -- the steroids have made me very puffy and caused me to gain 30 lbs, and the chemo is causing my hair to fall like snow. So, Shirlene (another friend) has cut my hair very short, and I'm wearing lots of scarves or hats -- again given to me by many good friends.

Let me end by saying I feel really blessed by this whole experience. My life has slowed down, and I am focusing on what's truly important. And I have really found out who my friends are! I am surrounded by a large group of caring and loving people who would do anything for me! Thanks for all your prayers!

Much Love,
Michele

The Night Before Chemo 3

My first posting...I am going to try to keep all my family and friends up to date on my CNS Lupus treatments. This week is the 3rd round of 12 monthly chemotherapy treatments. I'll post how it goes.