And just like that the bubble bursts.

Just leaving the Mayo Now and thought I’d give y’all the latest right here in the parking lot.

Remember when I said I was waiting for confirmation of all my results so I could stay on the trial? I didn’t want to get too excited about the CT scan results because there are other factors involved. I thought we were ok though based on the message from the doc, so this trip to the Phoenix Mayo was mostly a milk run. We let the hopes rise with the good results and started to paint a picture of the immediate future.

Well the other shoe dropped. Not only did my bilirubin stay high, it went higher. Too high so they are stopping treatment. So frustrating and disappointing. The first positive response to a drug interrupting the growth of these tumors I’ve had in over a year and a half, and now I have to stop taking it after only two months.

Did I mentioned disappointment?

This goes back to that post about allowing myself to have hope. All too often it gets smashed to pieces only a few days after a ray of that hope appears. It’s so much easier to expect the worst because you’re usually not disappointed.

But that thinking sucks and after a few minutes of pity party it’s time to change it up.

This battle is not over. Here’s what’s next. The bilirubin from liver trauma is a known problem with this drug, so protocols exist. We’ll take it week by week. I’m going to receive the medication but hold until we get a scan showing bilirubin is down. Trying to keep the break as short as possible so I can get back on the drug to keep the tumors from rebounding.

This fight is never a clear direction or straight line. That’s why we have to choose to live. It’s easy to get beat down or discouraged quickly. And as I’ve said before I feel all that but try to keep it short and release the emotions to allow room for wrapping my head around what’s next.

So next up let’s get the liver happy again.