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