Now that Jeff is done with R-EPOCH, I thought I'd write a post that might help other folks dealing with the scourge of chemo-induced mouth pain/mucositis. Jeff is still in the throes of it, and I'm still testing recipes, so we're not quite ready for the big contest winner reveal, but STAY TUNED. In due time. In due time.
For the rest of this post, I've interviewed Jeff about what to eat when you have mucositis.* I'm trying to pepper this post with phrases that will help cancer patients find appropriate things to eat when their mouth hurts thanks to chemotherapy. Hopefully these two sentences will help the Google search engine algorithm point people here. Now, for Jeff's input:
First, and probably most importantly, is consistency. When things are really bad, you need to get the ol' nutrients down the hatch without chewing, at all. So "no chewing." Also, things that are too soupy, are better than hard. That said, it should not be too liquidy. If it coats your mouth, or is insufficiently thick, it is actually harder to swallow and more uncomfortable to consume than if it is along the consistency lines of oatmeal > x = "sweet spot" > chicken broth > anything crunchy. In sum, it is time for gruel.
"Please Sir, I want some more."
Second, it cannot irritate your mouth. Anything acidic is no bueno. Jeff once accidentally ate an Odwalla protein shake without looking at the ingredients. Turns out the primary ingredient was orange juice and it burned like the dickens. (Dickens, get it?) Also, anything too spicy should be avoided. Yet, at the same time, the strong smells that come along with heavily spiced food are often helpful. While receiving chemo, taste is often altered. When a food doesn't taste "right" hitting your taste buds, it has helped Jeff to have aromatic things to eat: yummy smelling purees and such things that basically override his wonky taste receptors. For this reason, I have had more success with "warm," not "hot," spices like curry powder, or ginger.
Lastly, some tips on caloric content. Even with the most comfortable or easiest to eat foods, eating is a chore when your entire mouth hurts. It can take Jeff an awfully long time to choke down a small bowl of food. Mucositis also tends to hit when white blood cell counts are low. Low counts in and of themselves are exhausting so the thought of sitting up to eat bowl after bowl of something is not enticing when you feel so tired. You just want to eat, in as effortless a manner as possible, a bowl of some calorically dense (yet tasty) mush.
If it sounds like all of these things are kind of hard to mesh and balance together, that's true. There probably is no "wünderfüd" for this predicament. Jeff, ever the patient patient, says that this isn't necessarily a problem. Variety is good, so he has actually enjoyed trying new things.
We hope this helps someone else. Down with mucositis!
*Standard disclaimer: We are not doctors. Jeff is not "every-patient." Everyone has different experiences, different palates, etc. For example, one of Jeff's hospital roommates, with virtually the exact same diagnosis, had horrible nausea from chemo and could hardly keep any food down. Jeff hasn't been nauseated even once, but all this mouth pain SUCKS. His roommate, fortunately, did not draw the mouth pain card AND the nausea card. Also, some people get mouth pain and mouth sores even worse than what Jeff has experienced. Ugh. Anyway, this is just a description of what sort of, kind of worked for Jeff.