Monday, April 13, 2015

On Being a Caretaker as the Patient gets Better and Better

Nurse offered bubbles when my husband finished treatment
Nobody likes dealing with cancer, especially me. My daughter-in-law, the one about to be "pinned" as a registered nurse, loves everything medical. She's comfortable in the environment of a hospital, with officials rushing around reading machines hooked up to pale patients. Not me. The hospital smell makes me queasy. The pale people make me worried, and feeling lost and untrained makes me anxious.

So being a "caretaker," the euphemism for a completely uneducated person charged with somebody else's life-and-death requirements, is about the last thing I desire.

Sometimes we have no choice.

With my husband diagnosed with throat cancer, we together entered a strange and out-of-focus world with its own rules. Gravity doesn't pull the same direction. Something I considered gross, say, anything thick and greenish, becomes measured and analyzed. In this upside-down milieu, activities heretofore unmentioned earn applause. As one nurse blithely remarked, "we celebrate poop."

Me, not so much. Nor vomit, nor dense, stringy mucus. Seeing blood normally makes me feel faint. Needles going into people make me wince. This is the recuperatant's universe.

(Remember, I'm the movie critic's wife who won't accompany her husband to any screenings liable to portray violence, suspense or slapstick. What very sick individuals go through could be classified as the former. And sometimes the latter.)

So be proud of me. In the last two months I've learned a whole new vocabulary. Unless you're a medical professional, I doubt you know the word "bolus." (It's a big syringe of liquid that gets squirted into a person's stomach via a tube through a, pardon me, hole.) People whose swallowing mechanisms have been zapped or otherwise disrupted need to get sustenance somehow. I have learned exactly how.

And I will spare you.

Horror Film Medication Names
This monster is not "Ondansetron."
Now, everybody thinks she knows about taking medicine, right? You pop it into your mouth and depending on what it is, chew, or drink and swallow. Oh yeah--some people can't swallow.

Gratefully, my husband's swallowing muscles still function, but given all the zapping that went on in his mouth and throat, it's a mess in there. Again, I'll spare you, but as it pertains to me, the mess causes the need for varying levels and types of medications, many of which take a lot of careful administration in creative ways.

I learned that many medications go by not just one strange, made-up combination of letters, but quite often, two. These wild-words are used interchangeably, nonchalantly, as if everybody knows that, say, Ondansetron is also Zofran.  I should have figured that, since both sound like horror-movie robots.

"Gamera" is not a medication name.
Unfortunately, all medications carry destroyer-of-the-world names. There's no Caretaker U course called Weird Words 101 teaching you that two completely unrelated-sounding creatures are the same, and that those particular protagonists fix, say, nausea caused by chemotherapy.  Instead, as people wield these terms in your direction, you exist with a special level of panic, sure you're going to give the lizard monster to the patient when really he should have gotten the enormous turtle monster.

I learned many things. How to repress responses when cleaning out receptacles. How to speak up when bullied by people using multi-syllabic medical jargon. I know that as confusing and overwhelming as this is for me, it is magnitudes worse for my dear husband who actually endures the devastating process that is necessary for his cure.

It Gets Better
Even as the gunk and sputum and slime and other impolite substances continue as part of our lives, he shows signs of improvement every day. Which allows us to trudge along.

While he was hospitalized, I began repeating a phrase that my sweet Daddy used to say often: "Every day in every way I am getting better and better." I replaced the "I" with "you" and told this to my husband every day, even on days when I didn't believe it.

The phrase originated with French psychologist Emile Coue (1857-1926) who developed self-hypnosis and the use of "affirmations." He saw that patients he encouraged did better than those he didn't, conducted some experiments to show this, and through his book Self-Mastery Through Conscious Auto-Suggestion (1922) popularized his catchy phrase. It later reverberated throughout the culture, including mention in a PG Wodehouse story ("Mr. Potter Takes a Rest Cure"), a Pink Panther movie ("The Pink Panther Strikes Again"), and a John Lennon song ("Beautiful Boy [Darling Boy]").

And now my husband hears it and is getting better and better. Hair has broken through his scalp, now forming a five o'clock shadow where there were few wispy survivors of his chemotherapy.  His voice is getting noticeably stronger. He spends increasing time at his computer writing, and published op-ed pieces in USA Today, and his column for Truth Revolt, as well as commentaries you can read on his website. He's started recording segments for his show where he gives his take on the day's current events. The mucus that emanates from his radiated salivary glands still prohibits his hosting his three-hour radio show, but he's coming back, every day, in every way.

We both look forward to the time, relatively soon, when all this will be forgotten (more so for him thanks to certain wild-worded medications).  And I can return to being my squeamish self where little is slimy and our lives' cast of characters is familiar.