Thursday my doctor decided that it is time to take care of the rash and "open a can of whoop--- on it." This was especially amusing coming from my introspective Christian doctor. So, I had a few more drug infusions over this weekend, picked up some more drugs at Walgreens, and I have an additional treatment plan for the next several weeks tapering into months (outpatient).
This treatment is still mysterious to me. Basically, the T-cells in my blood are cleaned out so that they don't produce a rash or incite more dangerous things like gut problems in the future. It is supposed to be a no big deal kind of treatment, but it takes several hours a couple of times a week in the beginning, so it gets tedious. The blood is taken out via my central line, treated with light, and put right back in. Voila. There shouldn't be any side effects from it. ("Van, I can't remember what a T-cell is." Explanation. More questions. "Susan, they didn't teach you this in biology. They don't teach this in medical school." Evidently there is much to be thankful for out-of-network specialty specialists who specialize in such matters.) I begin Tuesday.
The rash itself is much improved, even in this short amount of time. The bottoms are my feet are painful when I walk, but with shoes, it is very tolerable on an outing, and I don't think about it. I haven't pushed cardio exercise. Swelling, swelling and my cute new jeans are looking doubtful. Little, almost no sleep for days and days. (I finally figured out how to fix the clock on this blog--currently 3:03 am, and this is typical of most nights.) All temporary, all fixable by the grace of God and his mercy. I'm reading a children's biography of the missionary Amy Carmichael, and have been inspired by her tenacity in the midst of illness and her faith. Good stuff.
Van and I took care of our very own children on Friday. It was challenging and wonderful. We tag-teamed a bit and got down to some nitty-gritty with household managing and disciplining. Our eldest is close by with lots of ideas how to love on him, and at the same time has been quite argumentative. I'm re-learning what battles to pick, and how to best serve his needs without catering. Aside from being ultra sneaky (with toilet brushes, purse contents, etc.), Zane has been pretty low-key. Avi has had her emotional moments, but is fairing well for such a transition. They are hanging out at the apartment with us, and we enjoyed an outing to a park directly beside Love Field with the jets passing right over us, complete with mama and baby ducks. They all loved it, although Avi decided that they were "too yowed" and "Plug your ears!" She is talking like a little lady. She cracked us up on one of our outings when Van and I were trying to lay out a plan, and she came up with, "No. Daddy goes and gets coffee by himself. I go in with Mama and Zane." And, that's what we did. E-gads. At almost 2.5 years, I'll take it over tantrums.
We hope to get together with Van's side tomorrow at the local air museum to check out planes close up and celebrate Mother's Day with Van's mom. We'll see how it all plays out. We've just been planning a couple hours in advance the last couple of days, so it has been tricky. It is definitely a more "normal", though, and I again nominate Van for Husband of the Year. Honestly, he's been a Wife, too, but I don't think he would appreciate the title. I think I'll nominate the little ones for Kids of the Year, too. They have been troopers and been the most flexible of all as we change up plans on them.
I feel like I'm finally getting the lay of the land around the apartment, so it feels more comfortable and I can help my people find Target and all its wonderful contents a little better. Independence with cooking and cleaning is to the point of where I feel bad that people are supposed to stay with me, but I suppose that it is the safest way.
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