DIY religion

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Back during chemotherapy, while I was lounging in my recliner imbibing toxins through a tube in my arm and Partner was watching "Let's Make A Deal" on the retractable TV, a young hospital chaplain named Meredith came around to check on our spiritual needs. We politely let her know that we were all set, thanks very much, but she (like chaplains through the ages) was stubborn enough to chat with us for a while. She complimented us on being such a close couple, and quoted something I'd heard once before about "for better and for worse." She left before she became too obnoxious, so I liked her. "Did you notice," I said to Partner after she left, "that she never quite mentioned any one religion? Very non-committal and non-denominational."

"I like that," Partner said. "I could get behind a religion like that."

"I think," I said," that there is a religion like that."

So, a few weeks later, we both got ourselves ordained as ministers in the Universal Life Church.

Ordination is free; you need only provide name and email address. For a couple of bucks, they will send you gewgaws like a wallet card and an ordination certificate and a press pass (evidently for when I'm interviewing the Metropolitan of Constantinople). After that, you need only follow the church's one dictum, which is "do only that which is right." (They further define that you must peacefully determine what's right in every case; no gunplay and no rassling allowed.)

Partner and I are both obnoxiously pleased about this. We are both in the process of determining the dogmas of our new church. Mine is going to involve wearing a lot of pink and purple. (I determined peacefully that I like both, and why not? Pink and purple are perfectly nice devotional colors; just look at the candles in any Advent wreath.) I will use a lot of multidenominational texts involving silence. (Examples: "Let all the earth keep silence before the Lord," from Habakkuk in the Jewish Bible; "Sky says nothing," from the Analects of Confucius; "The way that can be spoken of is not the true way," from the Tao Te Ching; and maybe also "That which we cannot speak of, we must pass over in silence," the last line of Wittgenstein's Tractatus.) My services will begin with maybe a piece of music, the reading of a text like one of the above, and then a kind of community silent meditation, the way the Society of Friends does it.

Also, did I mention the pink and purple?

Religion should be fun. It should be participatory, and it should be meaningful to the people who participate. If they crave mystery, well, life is crammed full of mysteries; meditate on a few of those. And if they crave certainty, there are lots of those too. Just think about them quietly, would you?

Partner has thought about his church too. He wants it to welcome all comers, and he would allow them to worship any god they please, and he intends to forbid proselytizing.

(I hope it also involves hats. Partner and I both look good in hats, and I hope he and I can lead some ecumenical programs down the road, once we've established ourselves as pillars of our respective faiths.)

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R words

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Wednesday, December 11, 2013 was the day of my last radiation treatment. I had my final chemotherapy treatment the week before, on Tuesday, December 3.

I am done with treatment. I am now in Recovery.

Recovery would be lovely if it took place in a day, or maybe two. It does not. As one waggish commentator said online: “The radiation doesn’t stop cooking you all at once. It keeps simmering for a while.”

Lovely.

Also, there are the naggingly minor side effects, like the sore throat that makes it almost impossible to swallow, and the bizarrely twisted sense of taste. (I long for real tastes, and for solid food. I was reading the biography of Muriel Spark the other day and found a mention of Muriel having drinks with Edith Sitwell – “iced gin with grapefruit juice” – that almost made me burst into tears.)

My energy is returning, which is not necessarily a good thing. I have lots of get-up-and-go, but very little to do. Christmas is useful, because I can use my time making lists, checking them twice, etc. I can organize books on my bookshelves. I can write little feuilletons like this one, when I can summon up enough brain cells to do so.

And I can day by day think about my improvement. I needed less pain medication today. My throat was less obstructed today. I slept a straight four hours last night!

So much for recovery.

There’s another R word that I don’t even want to think about right now, for fear of jinxing myself: Remission.

Remission is the absence of cancer. My radiation oncologist (who is not normally the soul of Christmas good cheer) tells me, with his gargoyle’s grin, that he cannot see any sign of the original tumor in my throat when he looks down inside. (That is, of course, with the naked eye. He is not Superman and does not have X-ray vision.) This is excellent news, and I will be having several more tests over the next few weeks and months to confirm this. Back in September, when this whole cavalcade began, I had a Stage IV tumor (“roughly the size of a Meyer lemon,” according to another clever little Internet source) under or beside my left tonsil, along with an assortment of nastily swollen lymph nodes. Now – who knows? The whole kit and caboodle appear to be gone.

I say again: they appear to be gone.

We Reassure ourselves with the good cheer of our doctors that the treatments Really Really worked. We don’t ever want to go through that kind of treatment again. (The first month or so was nothing at all. The last few weeks were Repulsive.)

So here’s to the future, and to another day of Recovery.

And you know what? The new season of Ru Paul’s Drag Race begins in a month or so.

So I have something to look forward to after all.

(Also: doesn’t the rhino in the illustration above look like a hippo to you?)

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Chemo brain

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One of my cancer-survivor friends used the expression “chemo brain” in conversation to me very casually a few months ago. “I came back to work one day,” she said, “and I sat through a meeting, but I had chemo brain something fierce, so I just went back to my office and addressed envelopes.”

Now I know what she was talking about.

Kids, it’s not so bad. It’s like a mild harmless form of dementia. It takes my current charming state of forgetfulness and turns it into a comedy routine.

Example: I take a pill and then stare into my hand, wondering if I took the pill or not.

Example: I go blank in the middle of stirring something, come to, and wonder how long I’ve been stirring.

Example: I bought some kosher salt the other day, used it, put it away, and then spent ten minutes looking for it again. It was adorable, like watching your dog (or your grandfather) spin around in the middle of the room, hopelessly confused. I searched the same shelf four times! I even took everything out of a cupboard and put it back together again! (The next morning I suddenly realized that the salt was in the pantry closet, right where it belonged. Smart mommy after all!)

Ah, the sweet bafflement of the elderly, and those of us under chemical control.

Enjoy our antics, kids.

Someday it’ll be you.

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Sense of taste

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One of the “minor” side effects of both radiation and chemotherapy is the loss of one’s sense of taste.

Well, not so much “loss.” More of a horrible transformation.

I had one of my favorite Japanese dishes recently: ahiru donburi, strips of grilled duck and bits of scallion scattered in a bowl of rice. Delicious! But a bit – hem – metallic.

Then wheat bread began to taste like cigarette ashes.

I tried a McDonald’s hamburger and fries recently. The fries were perfectly inedible, like pieces of uncooked leather. The burger tasted as if it had been marinated in Clorox.

Meat’s not good anymore, nor is bread.

What’s left? Chocolate pudding. Frozen yogurt. Lemonade. Soup. Rice Chex. Cheerios. Grape Nuts. Marshmallow Peeps! Mashed potatoes.

I told this to Apollonia, who was philosophical. “Take a lesson from Robocop,” she said. “Robocop ate a rudimentary paste.”

“A what?”

“A rudimentary paste,” she said carefully. “And now that’s what you’re going to have to eat too.”

“I wish I were Robocop right now,” I said. “I know what I’d do.”

“Calm yourself,” Apollonia said severely. “That’s the chemotherapy talking.”

So: anyone for some nice rudimentary paste?

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High-tech medicine

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My father’s radiation therapy in the mid-1970s was really brutal. It scorched his entire torso, and it did no good anyway, as his cancer was far too advanced.

My mother’s 1990s chemotherapy in the 1990s was much milder. She was only nauseous a few times. Taxol made her hair fall out, which really stunned her; I think it was the worst thing about the treatment for her. But the chemo extended her life considerably, without much affecting her quality of life.

And now it’s twenty years later, and I’m doing a tandem combination of radiation and chemotherapy. The radiation is directed straight at my left tonsil; after the first few treatments, I haven’t noticed many ill effects, apart from a little neck soreness/stiffness. The first few chemo treatments were similarly mild (apart from a little nausea and fatigue).

When I go in for radiation, I lie on the table and let the nurses fasten on my Radiation Mask:

They also give me a plastic hoop to grip with both hands, so I don’t flail my arms too much. The treatment is about ten minutes long; the machine makes all kinds of space-age humming and beeping noises. Then the attendant comes in and unbuckles me.

My mind wanders during the treatment. Early on, I found myself thinking about the plastic hoop. It’s ridged, and slightly flexible –

When the attendant came in to unbuckle me, I handed her the hoop and said: “This is a dog toy, isn’t it?”

She chuckled. “Yep. The medical version costs a hundred and fifty dollars. I bought that one at Petco for seven ninety-five.”

File this one under “health care costs,” and “high-tech medicine,” and probably under “human ingenuity.”

Pity the poor dog going without his toy. But it’s in the name of medicine, after all.

Woof woof!

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Hair loss

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My friends all know about my cancer now, and their reactions have been very diverse. But the most remarkable of all – which I got from two different people, mind you – was: “So will you be losing your hair?”

The first time, it caught me completely off-guard. The second time, I had an answer prepared: “Probably. I can put it in a box and ship it to you, if you’d like to have it.”

Honestly, though, I wonder if I brought it on myself. (The hair loss, not the cancer.) I have bragged more than once about the nice thick hair that Heaven granted me. Only this last spring, two of my (younger) colleagues were commiserating about the fact that they were balding. “I don’t have to worry about that,” I gloated to them. “I don’t have the gene for it. Look at what a nice thick handsome head of hair I have!”

They laughed dutifully, but they were both glowering at me.

And, you see, Karma is now paying me back.

The radiation therapy, being directed very specifically toward the tumor in my throat, will cause only a little hair loss – perhaps part of my beard and some of the hair on the back of my neck.

The chemotherapy, however, will probably take care of the rest. In the words of one website: “You will very likely wake up one morning with all of your hair on your pillow.”

Delightful.

But, as I keep telling people: isn’t that what hats are for?

And, thank goodness, I look charming in hats.

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Lent and Mardi Gras

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When my various treatments begin, I will have to give up a lot of things. I’ll have to give up hot/spicy food when I’m on chemo, because it will upset my stomach. Also caffeinated coffee. Also fatty foods. Most of all I will have to give up alcohol, because it would both irritate my throat (which will be irradiated five days a week) and interfere with some of the medications. One of the Comprehensive Cancer Center people told me the other day: “We’ve tried accommodating people with alcohol, and it just doesn’t work.”

Good goddamn!

My friend Joanne said, in response to this: “Pretend it’s Lent.”

This is excellent advice. Lent is forty days (not counting Sundays), roughly the period of my chemo/radiation therapy. People generally give up silly things for Lent, like chocolate and popcorn. I will be giving up my beloved curries, and hot sauce (which I put on pretty much everything!), and my evening drinks (which calm me tremendously).

But the treatments haven’t begun yet. I probably won’t start them until mid-October, once my feeding tube has been installed and my dental work is done and my facial swelling has subsided. (When you undergo radiation for throat cancer, they make a mask to hold your head in exactly the right position. If they make the mask before my dental work, or while I’m swollen, the radiation won’t be directed accurately.)

So I now have approximately three weeks of no rules at all, before the treatments begin. Three weeks of Mardi Gras.

And what happens during Mardi Gras?

All hell breaks loose.

I have had curry three days in a row now. I drink nightly. I’m eating ice cream as I write this.

When I begin the treatments, I hope they prescribe me a lot of soothing medication, for Partner’s sake and my own.

Remember what Bette Midler said to Kramer on “Seinfeld,” when she wanted her black-and-white cookie:

BETTE: Get me one of those Black and White cookies.

KRAMER: Yeah, all right, yeah…. (hangs up) They don't have any. But don't worry I'm going to get you one somewhere.

BETTE: Good. Because if I don't get a Black and White cookie I'm not going to be very pleasant to be around.

KRAMER: Now that's impossible.

O I assure you it’s possible.

Happy Mardi Gras!

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