Well it is Day 20 (day 18 since start of chemo) and Labour Day. Last day of summer, last day of having the summer holiday version of our life figured out.
David is still having nightly fevers (between 10 and 11pm like clockwork until Sunday night) which is exhausting because once you have a fever, then you start the infection protocol - blood work, testing isolation. And he can't get tylenol, until after. And then when he does get Tylenol it breaks his fever, but he gets super sweaty as it takes effect. So going to sleep at like 12:30am. Which it's not like he has a busy day the next day, per say, but you're tired at night, you know? And actually I've learned that being a patient is really busy. Someone is always coming by to see how things are going so you're not able to get like a 6 hour stretch of sleep.
David is also still super tired and given where his blood counts are, it's no surprise. He's basically got fatigue from anemia which isn't resolved by sleep but all you can do is sleep.
In talking about David's fevers with my sister we did go through his medications together and she was able to tell me what they're each for, plus she explained that when your blood counts are so super low, your intestines get super mad. Right now they are inflamed, which is probably why David is having belly pain. They also have to be careful because inflamed intestines can become leaky intestines which means infection (and a blood infection, which when you don't have much blood seems like a bad idea). I'm sure the doctors all know this, but David and I didn't, so it was nice of Charlotte to explain things so we could understand what possibly could be going on. David is on constant antibiotics, so that hopefully keeps the infection risk to a minimum, but it is something they are constantly keeping a eye on (hence the infection protocol). I really appreciate Charlotte's insights because it just helps to know what is going on, when you can't really ask and having the 10,000ft view.
David has had some great visits this week from his brother and sister in law, my sister and brother in law and us! Well I'm assuming they're great. But I know he loves them because it helps break up the day, otherwise everything starts to feel the same. He also had a friend and his son from the ward come by on Sunday to give David the sacrament. We happened to be there at the same time, so it was really special to see David get that ordinance. I am so grateful for them taking the time and serving him in that way.
On the home front, we hired a sitter for Monday - Friday from 4-7pm who will help with the childcare and evening duties. Like welcoming them home from school, sitting with them while they practice piano and sports, and making dinner. I'm hoping that the extra set of hands just makes things a lot more manageable. We also hired someone to take Ellie to her musical theatre class on Mondays since it's in Leduc and 90 minutes, so it means it's just handled and I don't have to work around it. I know I could probably coordinate people to help and a) it's easier to ask for help when I've paid someone and b) I need more consistency and less logistics in my life. That new routine starts on Wednesday and with school starting on Tuesday there is going to be a lot of change and busyness. I think I will love the routine but also know that a routine only seems to last for about 1 week here and then things switch up.
We've had amazing support from the ward/friends and it's helping this all feel not so alone. If I'm running this marathon, I feel like I hit my stride this last week with visits, work, and showing up as a mom. Taking the kids to Sylvan Lake on Saturday was such a treat for my heart - they had friends to play with, I had grown ups to talk to, and the weather was impeccable. Next week's leg of the marathon has some unknown hills to climb (school, extracurriculars), but I've got our village on speed-dial and I'm willing to ask for help. I'm not crying everyday now (and I know I could if I needed to), and Ellie reminded me that in our family we don't cry alone.
Sidebar: we did have an amazing conversation as a family (me and the kids) about what they want to be exposed to. One of the loads I was carrying was protecting them from the scariness that is cancer and trying to preserve their childhood. We had a conversation about what they wanted to see in terms of Daddy being sick, Mommy being sad/overwhelmed/etc; what they would do when it was too much; and how they would handle it if they wanted different things. They were so mature and thoughtful about it, but also I liked that we could give them some autonomy in an environment where there is very little of that. I think it helped me feel more grounded in what they were consenting to, so that I didn't have to work so hard on something they didn't even need (protection from life). Also this conversation was totally a big deal to me but not a big deal to them. After it was over, they went to talk about some random meme thing from the internet. 😛
Prayer list for now:
- Strength for the rush of back to school
- Comfort for David's belly + Protection from infection
- Love to the amazing nurses on his floor.
Love you all - off to more therapy!!! xoxoxo
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