Hives and High Notes

So my first round of Adcetris/Bendeka turned out to be pretty brutal. I had treatment on a Tuesday and Wednesday, and I just felt tired up through that Friday night. But late Friday night and into Saturday morning things got uglier fast. My insides liquefied and I was in and out of the bathroom frequently for the next six days. That and the steroids combined to prevent me from getting much solid sleep too. I had no energy at all. I didn't even want to listen to music or have the tv on. I just wanted to sit in our big chair in the silence and breathe. My resting heart rate hovered around 120 BPM and I just felt like the life had been drained out of me. But after about a week, things started improving just the tiniest bit each day. By the week after that, I started feeling human again. My remaining hair also fell out that week, but at least I was feeling better.

So we expected my second treatment to hit me just as hard. We cancelled a Valentine's road trip we'd planned to go see one of my favorite bands in concert. Sixteen hours round trip in a car sounded like a really terrible idea if my insides were going to liquefy again. As a sort of consolation prize (but also as an early birthday present) Alan got us tickets to see Les Miserables, which just happens to be my very favorite Broadway musical. Unfortunately the run of the show started on my first day of round two of treatment. Reasoning that it would be better to go sooner rather than later, Alan snagged a couple of wonderful seats for that Tuesday night after treatment. 

But some of you might remember that after round one I slept almost all of Tuesday night because they gave me Benadryl as a pre-med. I hadn't experienced any sort of reaction to the treatment though, so I decided to ask if we could skip the Benadryl for round two. And Dr. Essell agreed. My confidence that I'd be okay was the pride before the fall. 

Day one of my second round of treatment went as expected, just without the Benadryl pre-med. Then I came back home, had a bite to eat, and then we headed out to the theater. Things were going great! We arrived early and had plenty of time to make it to our seats. (I move a lot slower these days). The show was wonderful (alright, Fantine started out a little tinny, but she finished strong and Eponine was very nearly perfect). But just before intermission I noticed that my scalp was SUPER itchy and felt warm to the touch. Then that sensation spread to my neck and began spreading across my face. I expected to be a splotchy mess when the lights came up. Luckily it was less noticeable than I feared. We contemplated going home then but I hadn't heard "On my Own" yet and my throat/breathing didn't seem affected at all.

We enter act two with about 1/3 of my body in hives and my scalp (under my toasty warm hat) shrieking to be scratched. I'm certain our seat neighbors thought I had lice instead of cancer. As the hives spread further and further and the play soared on, I felt colder and colder. Seems my hives were accompanied by a fever and by the end of the show I was physically shivering. I also somehow dehydrated so badly I had no saliva in my mouth. Even getting out to the car was an ordeal, as my heartbeat was racing and I had to sit and take breaks. When we finally got home, Alan scurried around getting me Tylenol and Gatorade and blankets and Benadryl. Finally, after about an hour or two, my fever was gone and my itching was bearable. But we heard the people sing!

I had to explain that despite my hives and all the other nastiness, that night actually counted as a win. It's tough to still get out to do the things you love when your body constantly betrays you. But I was able to experience my favorite Broadway musical, even if I was itchy! I won't remember much about the days that I spend resting in the big chair. Those days are necessary, but I'm not making memories. So when I have the chance to make a memory, even if it's an itchy one, that's a win.

Since then, my second round side effects haven't been nearly as bad as they were the first round. I had treatment on a Tuesday and Wednesday and my insides again liquefied Friday night. But that only lasted a day or so. My stomach is still not entirely right, but I can sleep through the night with no urgent trips to the bathroom. I'm still very tired, but music and tv are fine and I can even get up to do things like get myself a Gatorade or a snack. I've also been experiencing a thing where some foods don't taste right. This happened to me in the past with a different chemo, but now it's different foods that taste wrong. My neuropathy in my hands has spread into my palms, but I'm still able to crochet a bit if I pay close attention to what I'm doing. And my heart rate has crept down to where my resting rate is around 100 BPM. So all in all, it's not a picnic, but I'm surprisingly feeling better this round than last!