There was some good news from my appointments on last week’s Long Day. For one thing, it seems like my disease is still responding well to the treatment, though it’s getting harder to tell from just inspecting my mouth, as the mucositis sores are confusing the terrain. For another, my skin does seem to be holding up pretty well, and I’m not yet showing a really bad ‘sunburn’ effect. My cetuximab rash continues to be mild and not widespread.
Also, my weight was stable, after having been down a number of pounds last week. Stable is good. I was kind of hoping to weigh in a little heavier, but stable is OK.
That’s the good news. From here on, it’s complicated.
I’ve been trying to eat as much as I can, but it’s really hard. Obstacles include not just diminished appetite, but nausea, constipation, and, increasingly, mouth sores.
Tube feeding is helpful, but there’s a limit to how fast I can pump food in before my stomach rebels, so it’s slow going. So with everything, it’s tricky getting enough calories. But it’s critical, which is why I have adopted a new motto, based extremely loosely on a line from Glengarry Glen Ross – ABCD: Always Be Chowing Down. I figure if, whenever I can be taking on food or liquids, I am taking on food or liquids, I should succeed.
Kimberly has been a superstar, finding and concocting high-calorie and nutritious recipes for me, and doing a lot of shopping to prepare us for getting me fed.
In preparation for the days when I have to give up on mouth feeding entirely, we bought a very nice Vitamix Pro 300 blender, which we’ve already started using to purée soups. (The Vitamix is quite a machine. Standing on the counter, it looks like Optimus Prime compared to our ancient blender, which now looks like the claw from one of those pick-the-toy glass-box machines.)
We also came home from our last Wednesday appointments with a prescription bottle of “magic mouthwash” (yes, that’s the actual name on the scrip) to help deal with mouth sores. It’s equal parts benadryl, lidocaine, and maalox, which I swish in my mouth to calm things down. The benadryl is supposed to ease the inflammation, the lidocaine numbs everything up, and the maalox is there to make sure the mixture coats the surfaces well enough for it to work. Let’s just say I have no fear that it will become a popular street drug, but if sure helps when the growing sores along the inside of my lips are acting up.
So, we are well-prepared. Now I just need to perfect the technique.
Always. Be. Chowing. Down.