bad-day-sign-300x300Yesterday was a bad day. We met with John’s local oncologist to have him translate the results of the latest CT scan & brain MRI. The last CT was in April but we needed an up-to-date scan for the National Cancer Institute (NCI – where we’re trying to get John into a treatment program). The MRI was clear (so that’s the good news). The CT scan, however, was hard to look at.

John has 3 new, large tumors in his upper and lower intestines. They are pressing on his bladder, pancreas, and liver. These are tumors that weren’t there in April and his doctor was clearly concerned. They are dangerously close to infiltrating his intestines. If that happens, they’ll cause internal bleeding that can’t be stopped except with surgery and they’ll have to go in and remove the section of the intestine that’s bleeding. He told us any evidence of intestinal bleeding means an immediate trip to the ER.

So it’s serious.

The tumor under his left clavicle is also much larger with 7 smaller tumors forming around it and into his underarm area. We’re waiting on pins and needles to hear from NCI about this treatment program (I wrote about that here in June: https://julieannejonesw2.wordpress.com/2015/07/29/stressfest/) which could be his last, best hope. In the mean time, he can’t be on any treatment and that’s one of the reasons the tumors are growing and spreading so quickly. Hopefully we’ll hear from them early next week and be heading back to Bethesda for an intake appointment soon.

This feels like a bad dream. It steals my motivation, energy, and focus. I don’t know what to do moment to moment and I can’t make plans even for tomorrow since we have no way of knowing when we’ll be getting on a plane to head back east. I’m tired and heartsick and trying so hard to just stay present and focus on right now, today.

As always, Johnny is a rock, focused on the next step and refusing to even take a glimpse at “what if.” He stays solid and puts one foot in front of the other. I honestly don’t know how I’d be surviving at all if it weren’t for him. I have no experience being this unfocused, somewhat lost person. I have no idea HOW to be her.

At present, we’re pinning all of our hope on the TIL (tumor infiltrating lymphocytes) program at NCI. We’re focusing on a miracle from that program and waiting on better days, which we have to believe are coming.

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