buckleupIt’s been a few months since I’ve updated the blog, mostly because there hasn’t been much to share. So much of having cancer and loving someone with cancer is learning to play the waiting game. In John’s case, since he’s feeling really good for the most part, it can become easy to get comfortable and not even think about his cancer for a day or two.

Today that ignorant bliss was shattered once again.

We’ve been fighting a battle with John’s pancreas, which got really sick after he had the first infusion of the “miracle” drug Keytruda in mid November of last year. The treatment for his pancreas includes ongoing Prednisone, and he can’t be on a dosage of more than 10 mg a day and qualify for treatment with Keytruda. A month ago, just before our trip to Mexico for his daughter’s wedding, his pancreas numbers were dangerously high and he had an infusion recommended by his Seattle melanoma specialist to try to combat that. Two weeks later, his numbers were back to normal and we did the happy dance all the way home.

Today, after another two weeks and tapering down the steroid dosage to that magical 10 mg per day number, we were hoping for good news at his check up. Instead, his pancreas numbers are on the rise again (boo!) and it looks like the oral chemotherapy he’s been taking since December is doing nothing. The tumor on his leg is up to 13 cm (3 cm larger than it was two weeks ago), literally the size of a tennis ball, and his LDH (a chemical marker for cell growth – in this case cancer cell growth) is also elevated more than it has been in the past.

When I asked his local oncologist if we should do another CT or PET scan, he said we could but he didn’t see the need. Based on the tumor growth on his leg and his elevated LDH numbers, the internal tumors are also most probably growing and spreading. The fact that he has the BRAF gene mutation doesn’t help, because it basically turns off the growth brakes in his cells so the cancer cells multiply more quickly.

The cancer is growing fairly rapidly and the drug that could potentially stop (and even reverse) that also attacks his pancreas so severely that it can’t be tolerated. We have emailed his specialist at Seattle Cancer Care Alliance and hopefully he’ll have some direction regarding our next steps. To say this is frustrating is an understatement.

I feel helpless and tired. The humor with which John and I both typically face life is nowhere to be found for me at the moment. I’m pissed off one minute, terrified and devastated the next, and generally fighting to stay in the moment and not just lose it pretty much every moment today.