I got in kind of a funk after Thursday, it was kind of a rough day. So sorry for not getting this update sooner. Since Kevin had been getting sick immediately after treatment, and then feeling better 3-4 hours later, we thought we’d try having him go in in the afternoon, so he could at least have a good half day of work at the office. He went in Thursday morning to the office, and I picked him up to take him to treatment at 1:30. It really did seem like a good idea at the time.
Up to this point, it had taken about an hour to get his labs done, and then another 2 hours to get the infusions completed, so we thought we’d be home by dinner, he’d eat, and then go to bed early to sleep things off. Once we got there, they took him in to draw blood to send off for labs. An hour came and went, and then another hour, and we asked why nothing was happening. Finally found out that his labs were a little low and they were having to re-test everything manually. Another hour went by, and at 4:30, we found out that his white blood cell count was low, as well as some other numbers, and that they were waiting to get approval to see if he would still able to receive his infusion.
Finally, it was explained to us that his white blood count was critically low, but that it was just barely high enough to receive the infusion, so they went ahead and started it up. The nurse had been really busy, and her personality wasn’t such that she had ever been very communicative to begin with, so we went home that night pretty confused, and not really knowing whether we should be freaking out or not. Based on what I understood, his white counts had plummeted to the point that he basically had no immune system. And this had happened in a day. Add to this that we have two kiddos at home who are coughing, runny nose, little germ factories at the moment.
After getting Kevin settled in and the kids to bed, Lila and I went out to buy some lysol, hand sanitizer, and other random disinfecting gear. I tried to focus on the task of keeping the house as clean and germ free as possible instead of worrying about what this would mean for Kevin, both if he were to get an infection (most likely end up in the hospital) or if his counts were to stay low (have to either delay or stop treatment). Thankfully, like I said, I had house disinfecting and sick children to distract me.
I begged Kevin to work from home the next day to avoid groups of people and their germs, and wondered if I was going to find myself turning into the crazy germ-phobic mama. I also wondered if we were going to have to enter a season of total isolation. I’d already been struggling enough with the isolation I’d been feeling. The next day, he was able to go in first thing in the morning to get labs done, and then go in later in the day for his infusion. Wish someone had told us earlier he could do that! He was glad to be able to have a few hours where he felt relatively well to do some work.
By the afternoon, he got a call that his counts, while still low, had gone up substantially. This was good news, but the logic of the whole thing made no sense to us. It seemed, based on my understanding of how this drug works, that his white blood counts would go very high, seeing as how the drug was tricking the body into thinking it was fighting an infection. Plus, if the drug had made his counts go down so much, why would they have come up the next day, since he’d had a treatment anyway? I guess the best thing we could figure out is that everybody responds differently, and how it all works isn’t very well understood. Arghh… very frustrating.
Anyway, we made it through the second day of treatment relatively uneventfully, and Kevin spent most of the weekend sleeping and resting. Unfortunately, he wasn’t really feeling much better by the end of the weekend, which wasn’t too encouraging. During radiation, he was always really dragging by Friday, but would feel almost 100% again by Sunday. We know it’s a totally different type of treatment, but it was still a bummer, especially since Kevin’s still doing his best to figure out ways to keep working during all of this. So basically, we are back again to really taking it a day at a time, with no real sense of predictability. But we are doing our best, and keep walking by faith.