Mutations and Meds

Hey there. I waited too long to update here. My apologies. I feel like I have been running at full speed since my doctor told me he was concerned about a mutation. We went to Michigan for Thanksgiving, we came back and I helped direct our church’s Christmas play, then I wanted to bake Christmas cookies, and then I got sick! It’s just been very busy.

Thanksgiving week was TOUGH. I was so grateful to be in Michigan with family, but I was SO anxious waiting for test results. I don’t know if I have felt that physically anxious since I started being treated for anxiety in 2018! I was jumpy and jittery and waiting for news that there was no mutation. During that whole time, I didn’t check my patient portal for test results. I was concerned that I wouldn’t know how to interpret them, and then would be more anxious waiting for the good doc to help me understand them. We still managed to have a beautiful week with family, and we are all super grateful for that.

We came back to Colorado, and by Saturday after Thanksgiving I just… I don’t know… the waiting and not knowing was so tough. On a whim, I logged into my portal and saw that the pathology was back… but then do I click on it? Do I wait? Well, I couldn’t wait since I knew it was back. NO MUTATIONS DETECTED. Bosulif was just the wrong drug for me.

Honestly? I thought I would rejoice and dance, and instead I literally just slumped. Physical anxiety is EXHAUSTING, and so I just let my body kind of collapse on itself. I texted Anthony to let him know… and ok. I was in the bathroom. Ok? I was in the bathroom because Sprycel sucks for my body and I was anxious and didn’t feel good and yes this whole looking at test results happened in the bathroom. But he came running downstairs and was yelling at me through the door, “really?” Yes, really. Here’s my phone. Verify that I’m reading this correctly, please.

After I finished my business, it was big hugs from Anthony and we filled the kids in on what was going on. They were delighted, and I’m so grateful we didn’t tell them and have them hold that anxiety for nearly two weeks.

The blessing? At church the next day, I was thinking about the praise songs and if I could still sing them with the same vigor if I had found out there WAS a mutation. How would I respond if something bad HAD happened? Not only that, but I felt really compelled to talk to the kids about that. They have lived a life without losing anyone they love, but bad things will happen. It’s part of life. And so that afternoon we had a conversation about how we will respond when bad things happen. Whether something bad happens to one of us, one of our dogs, one of our friends… how will we respond? What feelings are allowed (all of them!)? Who do we have to support us? It was a great conversation and I’m so grateful we were able to chat about it. I don’t feel like it will ease their pain when something bad does happen, but I’m relieved we have at least chatted about it.

So what now? Well, I restarted Sprycel before Thanksgiving, and Monday we retested bloodwork to check that nasty BCR-ABL. So. More waiting. I know there’s no reason that the number should do anything but go down, but I’m admittedly not an expert on my cancer… so I’m a bit anxious. Y’all can pray and send good vibes that BCR-ABL has popped right back down. Thanks so much for your love and support through this roller coaster!