ABCD.

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.

Optimus Prime, er, the Vitamix Pro 300

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.

This is where it happens.

Note: I wrote this piece on Thursday, and I wasn’t sure I wanted to share it. I think it may be hard for some to read. But I do want to capture the feeling and insights of that day, so I’m publishing it now. You should understand the setting is two days ago. Also, on Friday I was feeling better – still not great, but better.

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This. This place. This is the place where all that chatter about the “hero’s journey” shifts out of clever metaphor and into something gritty and real. This is where that ‘survivor’ thing really happens.

I feel like crap. Not death’s-door, can’t-lift-my-head-off-the-bed crap, but pretty bad. I was up essentially all night the night before last, often in pain, closeted in the bathroom trying to hang on as my intestinal tract moved from severe constipation to diarrhea through a number of awful phases, including one I described as “the uncontrollable urge to pass a brick.” Not only had the constipating and laxative side effects of my various medications not balanced themselves, they had teamed up to provide some truly awful experiences.

After 16 hours of that, exhausted, sleep-deprived, somewhat dehydrated, we began this week’s Long Day (rads, infusion and doctors appointments all day). The intestinal warfare had mostly ceased, leaving me only with a new feeling of nausea, which my anti-nausea drug wasn’t really helping. At least at the hospital, along with my cetuximab infusion, I was able to get some IV fluids, a dose of another anti-emetic and a nap, all of which helped. I was able to stomach a bit of rich soup for dinner and sleep a hard, deep sleep.

Still, today I am Not Good.

My intestines are still not back to normal, and I’m tired in that way you can get when your body below your sternum has been misbehaving for days. My appetite is off, so while I was finally able to eat something last night, it wasn’t nearly enough, and I wasn’t able to finish my breakfast this morning. I’m feeling more soreness in my mouth as the radiation adds up. My gut is playing a completely audible punk-rock-inspired art assemblage of gurgles and burbles.

I’m tired. I’m sad. I’m in pain.  I’d really like to just curl up in bed and retreat into a safe cocoon. I’d like to nap all day, and cry, and have a day off where I didn’t have to work hard at everything. I just want to quit playing this stupid game that isn’t any fun anyway, and be left alone.

But – this is The Place. This place – I recognize it. This is the place where what I do makes a difference. This is the place where little choices matter, and can have big effects. Here is where you could do one thing, which is what you really feel like doing, and which would be easy and comforting and you have every right in the world to do. Or you can do another thing that will be more difficult and not so clearly rewarding and probably not enjoyable in itself at all. (But, there’s that voice in your head saying it’s important.  (And maybe even Important.) And you get to choose.

And I have chosen. I’m not, much as I sincerely long to, going to curl up in a ball in bed. I drove myself to my damn radiation appointment, and on the way home stopped to buy some bread, in hopes that maybe I’ll be able to get down a piece of toast, and maybe that will help my gut even out. And I’m diligently chewing that toast down right now as I type, even though it hurts way more than it should, because I need the nutrition, and I’m hoping I can maybe get my guts to calm down before I start asking them to cope with PEG feedings.

And instead of going to take a nap, I’m going to be unpacking the boxes of PEG supplies that we had delivered last night, and getting them set up and organized so that maybe I can even try a first run later today, gut or not, because I really, really do need the nutrition, and I need to catch up after the last 24 hours.

And instead of taking time to freak out about how fast it feels like things are changing, and how rapidly I’ve landed in a place where I need IV fluids and supplemental nutrition, I’ll be mixing up some lysine powder in water to flush through my PEG, because that’s supposed to help with mouth sores. And I’ll be logging the toast I just finished (yes!) and the glass of whole-fat milk I had with it (yes!) into my food and fluid log, so we can keep track.

And, because I have the strength, I’m even going to do a load of laundry, because god-dammit I’m still a normal grown-up person who needs to have clean clothes to wear.

This is how we do it. Because even though I feel like crap, the little voice in my head has a good track record. Because maybe after I’ve done all I need to do, there will be time to do something more fun, like a nap. And if I’m lucky, my gut will calm down today, and I’ll get more fuel into the system, and I’ll feel better, in general, and if not, well, … then I’ll keep trying.

Because this is where it happens.