Long time no blog. Unfortunately, there isn’t much good to report.
The clinical trial ended in February. After that, we got to two rounds with the Oxi chemo before the allergic reaction kicked in. So we had to stop that. Then, after a couple rounds of irenitican, my blood platelet count crashed and I spent a week in the hospital. It has been a slow recovery from that, and frankly, I don’t think I’ve been the same since.
My latest CT scan (mid-May) showed the disease is slowly taking over my liver. I had to stop my most recent infusion because my bilirubin–a liver enzyme–levels were high. And that’s where’s our story picks up. I haven’t had a treatment in like 3 weeks, and I don’t know what’s going on at this point. Very scary and depressing to think that after and year and a half of treatments, I might be out of options.
I’ve been praying for approval for a liver surgery because chemo wasn’t doing it’s job anymore. Well, so far that surgery has been denied because of my liver condition, but the docs don’t have any other options for me at this point. Back to the waiting game. The surgery is called SIR SPHERES. It works by injecting radioactive beads right into the liver so it hits the tumors directly. But it’s rough on the liver, so with elevated bilirubin, my doc is afraid it might make me worse.
And my symptoms aren’t helping. Difficulty sleeping. Enlarged liver with tumors on my last scan. Mild edema in my legs. Shortness of breath. Green eyes from jaundice. Big belly from enlarged liver and probably fluid retention. It’s hard not to give up. My parents God bless them are looking at 2nd opinions and holistic approaches. But to me it just feels like too little too late sometimes. We’re going to try to treat the jaundice naturally but it might just be an indicator of where my liver is right now.
Please pray for wisdom for my docs as they come up with other options.
Please pray for me to make it through emotionally and physically.
Please pray for my parents who’ve come down here as semi-permanent caregivers. They have been wonderful and I am more appreciative of them every day.
SUPER PRAISE that I am in little pain right now. Truly a blessing. I could write commercials for Alleve for my next job.