My husband John’s mom always says that he wouldn’t say shit if he had a mouthful. It’s honestly one of the things I love most about him. He’s an optimist at heart and rarely ever complains. Even through his diagnosis and the twists and turns our lives have taken since we got it, he’s remained his grounded, happy, non-complaining self. That’s how I know that the toll the side effects from this clinical trial are taking on him is really big. Because it’s affected him so deeply.
They didn’t tell us when he started the trial three weeks ago about the crippling fatigue, which hit him, right on schedule based on what I’ve heard from others in cancer treatment, on day three after his last infusion. We also weren’t expecting the drenching night sweats or severe sores on his tongue which made it virtually impossible for him to eat for several days. We had hoped that at least the fatigue would subside after a week or so, but it hasn’t. He’s pretty much tired all of the time and has pushed himself to work through it (because we don’t have the luxury of him being able to take a leave of absence from his job – when you’re self employed, that’s not usually an option). On the 4th of July, every time he sat down, from our local concert in the park celebration to the fireworks display, he pretty much instantly fell asleep.
They did tell us that the biggest issue with the drugs in this trial was possible Colitis and severe intestinal issues. We thought we’d dodged a bullet or possibly that the cannabis oil he’s been using had helped with that because he hadn’t experienced any intestinal issues, but out of the blue last weekend, it hit him really hard. This isn’t just run-of-the-mill diarrhea, but gut wrenching cramps that literally brought him down yesterday, when I came home from errands in the middle of the day to find him asleep on our bed.
That was a wakeup call for me. This is a man who normally goes 90 miles an hour from the moment his feet hit the floor early in the morning to the moment he drops into bed late at night. I’m the same way. It’s one of the reasons we’re so well suited. So for him to be napping in the middle of a busy day when I know he’s got 100 other things he’s worried about getting done, it’s got to be pretty bad.
And today is infusion number two. I’m praying that the current symptoms don’t get any worse and that he doesn’t develop any new ones (since the list is pretty long and nasty). This trial is his best hope for any sort of remission. His doctor told him last week that the results they’ve seen so far are very promising and that they’re actually noticing a 30 – 60% remission rate. For metastatic melanoma, that’s almost like a miracle. We’d obviously rather have him living with what could be the long term (even permanent) side effects from such a promising trial than the alternative, but damn. It’s still not easy to watch him go through this.
Your continued prayers and positive thoughts and energy are appreciated beyond belief. Our community is our strength and if you’re reading this, you’re a part of it. We are humbled and grateful for the size of that community. Thanks for sharing our journey.