Changing Relationship With Food


The past few days have been an interesting and challenging transition.

My throat is being very clear that it only wants liquids. The best way to describe the feeling is when not swallowing, and when swallowing. When not swallowing, I have a mild burning sensation at the back of my throat, up into my soft palate (where the cancer spread). When swallowing, it feels like there’s a lump of coal right behind my tongue–so burning plus a feeling of obstruction.

I have some “magic mouthwash” from a recipe given by my doctors, concocted at the pharmacy. It contains Maalox, liquid children’s Benedryl, and lidocaine. The combination soothes and numbs my throat enough to get liquids down, but it’s still challenging. Of course, two things are still true:

1) That’s why I got the PEG tube, so there’s no excuse for falling behind on nutrition or hydration, and

2) I MUST keep swallowing so I don’t forget how.

Yes, it’s possible to forget how to swallow. I couldn’t understand how that could ever happen until this week, but now I get it. When you don’t have a lot of saliva and it hurts to swallow, you just… don’t. You literally don’t even think about it.

And when you don’t think about it, your body forgets how. The NP handling my chemo said she has a head and neck cancer patient who stopped swallowing during treatment, and he still can’t swallow a year later. She’s not the type to tell horror stories–it was a serious warning.

So I’m in the process of that transition now, to liquid foods and to the PEG tube as needed. The difficult part is that the rest of your body doesn’t really understand what’s happening. You don’t really think about how interwoven all the elements of eating are until some of them go awry.

For example, your stomach keeps growling, because liquid food doesn’t have the consistency it’s used to. Since you’re hungry, your mouth keeps “suggesting” flavors and food types that you actually can’t eat. Last night, it was a bologna sandwich, of all things–and I haven’t been able to eat bread in at least two weeks! Your nose is still working fine, of course, so whatever smells good gives you that conflicting signal that you should eat.

It’s a transition I knew I would have to make–I just hadn’t know what to expect. It’s a good life lesson for sure, and one that will probably help me lose weight and eat more healthy food after treatment  because I will have broken much of the emotional, self-medicating relationships I have with food.

It’s one of the ways I’m going to come out the other side of this not just a different person–but a better one.

Related Posts

Be Your Own Advocate

I routinely encounter folks dealing with serious illness (mostly cancer, in my circumstances) who accept whatever the first doctor they meet tells them, even if what they’re told is that there is no hope. I

Read More »

Head and Neck Cancer Awareness Month

April is head and neck cancer awareness month! Be aware of the causes and symptoms, summarized in the graphic at the bottom. For me, it was a swollen lymph node below my jaw that didn’t

Read More »

Clinical Trial Math

Clinical trial math example: Monday + every two months = time to start worrying about my scan the following Monday. Tuesday + pain below my right ribs = worry about that AND the scan the

Read More »

My Best Days Are Ahead Of Me

Last year, I was in the hospital from chemo for my birthday, not knowing the cancer would blossom again months later. This year, I’m walking around San Francisco–short of breath sometimes, but walking–looking forward to

Read More »

Unpredictability and Patterns

The every-other-week treatment schedule has become habit at this point. In at 7:45 am, IV and blood draw, discussion with the trial nurse, meet with Dr. Ani, get the blood test results, then infusion and

Read More »

Speaking Out and its Price

I’m exhausted and stressed and sad and angry. I try to keep my posts here focused and positive, but it’s really hard at this point. I was contacted last week by the Organizing Director of

Read More »