There I go hoping again
As I mentioned in my last post, I was given a few weeks to try hydrating like crazy to possibly dilute the bilirubin in my bloodstream. I’ve guzzled so much water it’s not even funny. This morning I downed another 60 oz first thing and peeing clear. I was ready for the blood test.

Sadly it didn’t work.

Bilirubin is even higher at 4.1. Waiting to hear confirmation but this likely means I go out again next week, get put on a break and then the lowest dosage allowed under the trial.

Next month I have another CT scheduled and I know in my gut (punny) these tumors have grown further. So on the lowest dosage it’ll only be worse which likely means I’ll be off the trial. That’s not discouragement and lack of hope talking, that’s just the likely scenario based on options left with this trial.

Those are tough things to internalize after so much effort. The upside is I know I tried my best to do what I was directed and I’m still continuing to try. But for a moment here once again I’m shaking my head wondering why my body can’t handle the drug I need to keep these tumors down.
Next visit I need to start talking more about what is next if possible, and what is a match for me. Lots of questions and not sure how many answers. Still holding out hope that perhaps we can stretch the efficacy of this trial while we look for more options.