Sunday night

The ward is busy tonight. Grandkids and the grown children of patients, mostly. There was a line-up to the kitchenette as people waited to heat food brought from home. Roast beef, turkey, ham, mashed potatoes, asparagus, roasted vegetables. One family sat in the chairs outside the elevators and ate pizza.

I’ve had a bit of a regression so far as eating is concerned. The last two days, as the pain in my throat has receded, controlled by the dilaudid, the pain in my mouth has grown. My tongue is like sandpaper and feels the way I imagine a tongue to feel after being stuck to and torn off a frozen flagpole. Last night I tried to drink an Ensure supplement; the stinging smarted so severe that tears sprang from my eyes, more from surprise than pain. I thought I’d repeat the experiment with a Vega shake, only to repeat the result. So back I went to ice cream, the food I had already known.

This morning I went and fetched myself a latte. I could drink only half and blamed it on the inferior quality of Second Cup coffee. I asked Beck to bring me some things I thought would be simple to ingest — goats milk, cottage cheese, and pumpkin seed protein powder (a fairly taste-free way to add protein to soup). The cottage cheese, I figured, would not feel like hot coals in my mouth, nor the milk like acid. I figured wrong. And when I tried the time-tested watered-down soup, I found it had betrayed me as well. Everything had turned against me.

As I suspected last night, the mucositis is flaring up from the second chemo cycle. A few days ago it began to manifest as new sores in my throat. It isn’t appearing as new sores in my mouth though, but as the swelling and sensitivity of deeper tissues of the tongue. All I can do is continue doing what I’m doing and ask if we can safely add Advil to the mix.

Snag in pain control aside, I am feeling good. The pain doctors (they are actually called palliative doctors, but pain is much faster to type) added Ritalin to my daily list of meds. I take 10 mg in the morning and 10 mg in the afternoon. It is meant to cut through the fog and fatigue caused by the opioid. When matching the opioid level to the level of pain, you’re not supposed to feel sleepy or foggy. But that is exactly the case for me — without even having 100% pain coverage. I can’t watch movies or television shows — both because it is too hard to focus my eyes and because it is too hard to follow without falling asleep. I also have difficulty reading. Books and magazines are entirely out of the question. The words just march around like ants on the page. Reading from the screen is somewhat better — I can increase the text size and read in short bursts. Typing is a bit easier but I go on blind faith. If I write a post, my eyes are useless for reading to edit after.

I miss reading. I brought books with me hoping that this would be the time I’d be able to read. Not so. But Sasha sent me a message today about my last post and he said he felt like he should offer to sweep something or read me a long poem or something and I told him that if he was serious about the reading, I would take him up on it. Though Sasha and I have known one another for years, we are friends in the acquaintance, see-you-at-a-party-or-on-the-street sense. I don’t care. I like distinct moments or events that define the movement from acquaintanceship to friendship and those moments occur when you let things like this happen. 

And so Sasha read me two stories by an author I’d never heard of, who’d died young from a brain tumor, leaving behind this body of work on his hard-drive. I don’t remember his name, though I think the first was Adam, and I think one of the stories was called “Hambone” and I think the other was called “One Theory About My Marriage” and both were very very good. And then he read me two short stories by Grace Paley whose work I am familiar with and whose name I remember, but I don’t remember the titles of either of the stories.

And Evan brought me Archie comics which was a staple of being sick as a child. And so it was a good day.

I was going to have chemo on Friday, just the AMG-386, which did not hurt my mouth. But my counts were a little low, so Dr. Siu decided it would be better if we waited and gave me more time to heal.  Before the weekend she was saying, hopefully we can get you home after the weekend, but today she was saying, hopefully you can go home before we have to dose you on Friday, though she didn’t say it with much confidence.

I don’t mind though. I feel mostly healthy, though with pain. The pain makes me want to stay near people who can do something about it in a moment if needed. As long as people keep visiting, I don’t feel out of touch with the outside world. I can get out of here — tomorrow I am going to Jenna and Josh’s for Thanksgiving with friends and family. I am healthy. My pets are taken care of. I have no responsibilities in the hospital. If I weren’t here, I would feel how deep to the bones my fatigue goes, and then I would need more help, and then I would feel mopey and depressed. It’s quiet on this ward and I can seek out quieter places when I need them. As long as people keep visiting and reading to me and painting my nails and gossiping, I will be fine. A hospital is a good place to feel bored, and feeling bored is conducive to creativity. I would not go so far as to say I like the hospital, but as the healthiest person on the floor (nurses and doctors excluded) I don’t mind it.



About Alicia Louise

I'm a writer, editor, fact checker, storyteller, events organizer, chronically busy yet endlessly lazy, mildly neurotic (though I keep the neuroses well-hidden, one hopes) 32-year-old with recurrent ovarian cancer. I like people and good writing and straight talk. I have a hard time feeling sorry for people, including myself, but the people that I love, I love passionately; one may even say creepily. I try to keep that mostly to myself. I'd like to be charming, but I'm usually just a mess. I'm like a gull slamming into your windshield.
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