22 March 2014

I have got to stop taking prednisone at 11 pm

4:15 and I'm pretty sure I'm up for the day. I'd go for a run if I hadn't been hooked up to an iv 24 hours ago. Ok, let's be real. I'm also afraid of the dark and am relatively certain that there is a dude in a windowless van trolling my incredibly safe neighborhood for moderately chubby runners with friendly faces AS WE SPEAK. So no, there will be no running. Instead, I will regale you with tales of my adventurous life.

Took my prednisone at 11 pm last night, so the insomnia hit me about 20 minutes ago. Then the kids hacked and coughed all freaking night long. I am trying to let Andrew catch up on sleep since he had the hacking children all week with absolutely no rest. At first I thought that might be an exaggeration, but holy Toledo has it been a hellish night. It's 4:30 now and I'm just going to give up for the rest of it. Claire has been laying on my femoral artery for upwards of an hour, and every time she coughs I'm certain she's going to throw up. My body temperature is all screwy, so every time she gets comfortable I start to sweat like crazy. I am making some wild plans to combine mucinex and nebulizers for the rest of the day and see if I can't straighten these nasty kids out.

I was able to leave the hospital last night and am feeling okay. I started the remicade on Thursday and now I'm really in a holding pattern. Where drugs go, they've done absolutely all they can do for now. They were able to bring my iron levels back to "acceptably low," from "are you sure you don't feel like you're going to die?" and I can expect those to continue to climb over the next few weeks. My red cells and white cells looked good as of yesterday, and I already seem to be tolerating the remicade very well for my first infusion. There will be side effects to iron out over the next few months, but I should be able to resume daily life fairly quickly. The biggest concern from here will be taking steps to live comfortably with a suppressed immune system. Some people are fine for years and never really get sick. Others tend to be very susceptible to any germ that crosses their path. We won't really know how that will go until we try. I'm focusing on constant hand-washing and keeping the house majorly sanitized, and starting to work with the kids a little more on keeping their hands clean and reasonably avoiding germs. I don't want to turn them into a bunch of little germ freaks, but it may also spell the difference between a smoothly-run house and mommy landing herself in the hospital with bacterial pneumonia. In addition to the common-sense stuff, I did some research last night and found some finer points that we'll have to keep in mind for special occasions, like not receiving live vaccines and bring extra careful around animals and small kids. It's incredibly fascinating to me. Andrew calls the remicade "the gamma bomb." I'm very excited about my potential Hulk powers.

Let's see, you've been caught up on that excitement. I go back in two weeks for another round of remicade, and then four weeks after that for my final loading dose, and then the infusions will be every eight weeks after that. I did some preliminary research on the dollah side of it last night, and I'm praying that our insurance is good to us. Otherwise...we're all getting remicade for Christmas! At $10k per infusion, I'm thinking that after about a year of treatments my colon will be almost as valuable as Dolly Parton's...

...voice? Heh. Maybe more, since my colon works 9 to 5 AND 5 to 9...who's the boss now, Dolly?

Okay...anything else? Oh, let me just tell you how awesome our friends and family have been through all of this. We are so surrounded by so much love and support! The phone calls, cards, magazines, emails, surprise gifts in the mail, playdates for the kids, meals, goodies at the door, flowers, Amazon gift cards for books and diversions, spiritual bouquets, prayers, visits in the hospital, tiny gestures that are just so meaningful...I am absolutely shocked and humbled by the many ways the people we love have poured out so much support over the past few weeks. God is so good in the way He has provided for us. There is nothing that stirs my soul quite like finding out that people love me as much as I love them. I consider myself to be such a selfish, self-absorbed person, and I know that I deserve a smile at best, most of the time. To be showered with so much concern and love just breaks my heart a little bit. How many ways can I find to show how much I love the people who care so much? It just moves me beyond words. And now I'm crying. Can we go back to talking about Dolly?

My mama is here and I am loving that we still have a weekend together after she spent all week loving on my babies. They've never had a full Mimi experience without a million other things going on, and I know this week has been so special to them. If course, just like Grandma Cooke is synonymous with chocolate milk, Mimi has established herself as an endless font of apple juice, so we'll be on a strict detox next week. A small price to pay for a week of Mimi love!

It's 5 am! That means people everywhere are starting to wake, and someone will post something on Facebook within the hour. Huzzah!

I should go now. I have so much to catch up on. Words with friends, awkward family photos, Pinterest, instagram...

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