My first full day at home started like the past few mornings – really, really early. I wake up around 3:30 in the morning and can feel that my blood sugar is really low. I wake up shaky and kind of sweaty, so I test it and it’s low – just less than 70. So I drink some apple juice and eat some pretzels. I feel better but I can’t go back to sleep. From 3:30 AM – 5 AM I decided to be productive and use that that time to figure out all of the prescriptions I’m on and when to take what, to sort through three weeks of mail and bills and talk to Mom since she wakes up crazy early.
I crawled back into bed with John from around 5 to 6:30 when his alarm started going off. John had to work yesterday, his one Saturday every 5 weeks. When I got up I felt wonderful, Amy & Cashel (Amy’s youngest who is only a couple weeks younger than Ryan) spent the night and it wasn’t long before the kiddos were up and we were all playing and eating some breakfast.
After observing my hair being shaved with a #2 guard, Amy & I decided we needed to take it down to a 1.
It’s just already being, for lack of a better adjective “patchy”, in spots and thought it would look a little better just a little bit shorter.
I spent a lot of the rest of the morning just taking care of things on my to do list – a little cleaning, balancing the checkbook, lots of annoying little tasks that pile up when you’re away from your home for a few weeks. Then I had my meeting with the home health care providers that will be coming to the house once a week to help me manage the “port” in my chest. And when I had said port before, that’s not actually what I have. I have a Hickman line. From what I understand the difference is basically the amount of the cords that hang out of your body. Ports sort of stay under your skin until you’re needed, but instead I have two cords that hang down to my belly button. These will stay in my body until I’m completely done with chemo. I’ve had lots of nurses asked why they gave me that instead, and I especially wonder since I have a 19 month old who likes to pull on things he shouldn’t. Plus the fact that I have to hide this wire in my clothes and cover it with plastic and tape everytime I shower, and “flush” the lines daily.
After she left my friend Ginnifer, who was in town from Indiana, came to visit with her baby Clare. It was the first time we got to meet each other kiddos, so needless to say it had been a long time! It’s good to know we’ll like the future in-laws:
My cousin Drew came in from KC yesterday too to spend the night and hang out. He walks in the door, gives me a big hug, shows me his bald head and hands me a cupcake with “Lowa” written on it. Just having him come down and that in itself is more than I would ask of anyone, but then he gives a couple books he thought I would like – The Guernsey Literary and Potato Peel Pie Society and The Thirteenth Tale. Then… if anyone knows Drew, they know how into music he is. I am always bugging him for music recommendations and I pretty much find all new music I like through him. Music helps me more than about anything with coping/ thinking through situations so this gift he gave me means more than he will probably ever know. He gave me an 8G iPod Nano already filled with everything he thinks I’d like. Just my special little iPod, never to be synced, just to be listened to when I need to escape. Just amazing. On top of that, Drew’s girlfriend Amanda is a aesthetician/makeup artist and while she couldn’t make it, she sent some skin care products. She has worked on the skin of people going through chemo before and sent a special product you can put on your eyelashes and eyebrows to help keep those hairs from falling out, or at the very least, help them grow back in faster. I am just so, so thankful to have people like this in my life. Again, speechless.
Ryan was being a little bit of a handful during dinner, not wanting to eat and being a little bit of a fussy pants. Right after dinner Drew & I went to rent a movie for the night and by the time I got back Ryan was burning up. I knew he wasn’t feeling well because he actually let me hold him for more than 30 seconds at a time.
I take his temperature and it’s 102.0. The highest it’s ever been. Now, I think I handled myself pretty well through this whole process so far, but this was my first sort of “break down” moment. Do I call his doctor because it’s a fever but he doesn’t act sick, do I call my doctor because I can’t be around my baby with a fever? I decided to call his doctor’s exchange first. I explain the situation and she says we can give him some Tylenol but it will just make him feel a little better, he’s probably coming down with something that hasn’t really started yet. Basically just to expect that he’ll wake up with a cold. I explained to that nurse about my situation and she said she was worried about me being around him so to keep my distance and call my doctor’s exchange to see what they wanted me to do. So now I’m sitting my closet floor crying trying to call my doctor, and I can hardly explain to the guy at the messaging service what is going on. I guess he didn’t understand anything I said either because I never did get a call back from the doctor. Which I’m glad since I realized I shouldn’t have been freaking out like I was when I called and they just would have said to see what his temperature is today and stay away if he’s feverish.
I am writing this early Sunday morning and waiting for Ryan to wake up. We will play it by ear, but I’m just praying he’s better so we can all just pretend things are normal for a few days.