Water of Life: Chemo and Everything After
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about water and metaphors and chemotherapy and peeing
A college friend dropped out to join the Navy in the the early 2000s. I asked him what he was doing on the Naval base where he was stationed, still in the United States on the Atlantic coast, where he mostly patrolled the base when he wasn’t learning about nuclear submarines.
“I’m just watching the ocean for terrorists,” he joked.
Modest Mouse sings,
And it occurred to me that the animals are swimming
Around in the water in the oceans in our bodies (3rd Planet)
My cyborgized, technologized, monitored, medicalized body receives a scan every three months.
We’re watching the ocean — my ocean, me — for terrorists. There might be something lurking there even if we don’t see it yet! My cancer can be microscopic and not at a level where it can be detected.
Yet.
YET.
If it’s a good scan, they say “no evidence of disease” and release you back into the wild. The terrorists could still be out there though. We scan again in three months.
If the scan doesn’t go as well, I might have “evidence of recurrent disease,” which happened once. We “extricated the mass.” I had lung surgery. The terrorist was extracted.
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After my lung surgery, they wanted me up-and-at-‘em pretty quickly because of worries about blood clots and whatnot. They wanted me to get up and use the bathroom, a task which would have normally been not a big deal made into a production. I was attached to many things, including a surgical drain, and I’m an amputee from the cancer, so I am perpetually a fall risk, and I wanted to put on my prosthetic leg to get up. But I also needed to take a walker because I was woozy and an IV pole for fluids and a box with a tube connected to my surgical site that collected what looked like a chunky blood situation.
I usually have a lot of swag, but this was extreme. Add in that two nurses were trying to help, and the room was tiny.
We got me to the bathroom and onto the toilet. and the nurses who had helped convey the box of bloody junk and IV pole along with my body left so I could have some “privacy.”
I looked up, trying to relax and pee, and I gazed down the entire hall of people doing average hospital things — someone getting physical therapy, some people with equipment. I was in the corner room — that apparently had a view of the whole corridor from the toilet if no one took care for privacy by using the curtain or shutting the door.
Looking out at all of this, I thought, I guess this is my life now, and peed.
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My body is mine. But sometimes it changes.
Two kids out of it. IUD in.
Port-a-cath implanted.
One knee and some femur and thigh removed.
Some serious alteration.
A chunk of lung gone.
Metal rod in my leg, and screws that sometimes hurt when the weather changes.
And when I’m feeling fancy I can
don a fake leg and
push hearing aids into my ears and
paint my fingernails gold.
Or I can take off in a rolling walker or hobble with crutches.
Sometimes I crawl. When no one is around to judge. When I am alone in a hotel room.
Maybe my body is text,
and I’ve seen a lot of revisions.
I’m usually grateful for editorial advice. All my metaphors are all mixed up.
Got a scrambling of chemobrain going,
but it looks good on me. In me. Is me. Still me.
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The first time I met my specialized-oncologist, he told me that I was going to get High Dose Methotrexate (HD MTX, as it is called to sound scifi),
where they would change the PH of my body and
then administer this particular drug at 100 times the lethal dose,
then give me a rescue medicine a day later,
and then watch the levels of the drug in my blood come down
until I could safely leave the hospital.
Oh, and I would be on an IV drip of sodium bicarbonate the whole time to change the PH of my body to help protect my kidneys from serious damage.
Arm & Hammer and me.
Dumping baking soda in me.
Swimming around in the oceans in my body,
my salty oceans made basic.
For me, treatment meant five day hospital stays, sixteen of them scheduled, spread through my treatment which also included three other chemo agents. Some people process the drug more quickly, some less quickly. It’s a matter of what bodies want to do and something over which we all wish there were more control.
All of this would be inpatient — and away from home. (They didn’t have the equipment to do the blood tests I would need at my local hospital.)
Check-in, change, and be changed.
I would enter into the world of Dune in my imagination, facing the Spice Agony, bald as a Reverend Mother and internally reciting the Litany Against Fear:
I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain (Frank Herbert, Dune)
The HD MTX was expected to cause the fewest side effects of the drugs I received.
But there were side effects still: mouth sores, mouth pain, the swelling and aching of my palms and soles. Less bad, less long-lasting than the other three chemos. This didn’t scramble my chemo’ed brain. That would be some of the others.
Spice Agony — where a Bene Gesserit witch takes a poison and changes the substance inside of her to neutralize it, to let it pass through — filled my imagination and approach to this part of chemo regimen. I would become a Bene Gesserit witch, take the poisonous Water of Life, and face it, riding out the drug with my changed body and the toxin changing me.
Only I would remain.
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We also had to test my urine PH levels the whole time, for my protection. But I was allowed to go on my own and privately, as long as I saved the urine. I would always check the test strips myself to monitor my own PH, but the nurses always checked after me. I got really good at riding my rolling walker (no fake leg yet) while rolling an IV pole so that I could go to the bathroom without calling for any help.
I had to pee a lot because of the bicarb drip, always cranking.
I’d also roll down the corridor to get the nurse at the desk to fix my IV pole computer when it made its chronic beeping noise from getting bubbles in the line.
A bubbly bicarb in a less bubbly human.
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I know all the tricks for the electronic IV pole computer situation. I’ve watched nurses perform the tasks so many times — and talked a couple of travel nurses through the features of the particular brand they have on the chemo floor.
Who is this cyborg who interfaces with the machines?, I imagine they never thought to themselves.
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This morning, over a year after my lung surgery and four years past the start of my chemo year, I am greeted by three small animals.
Captain Justice Sugarpaws climbs onto my back, his 10 lb body standing atop my side. He meows loudly twice before settling in for a morning nap, like the pat of butter to my mashed potatoes — or a ship floating on a sea of me.
After a while, he gallumps off, and I lean over to check the clock. I might have about 10 minutes before my next visitor because my spouse is out of town (he usually handles the wake up shift). But then I hear a rustling down the hall.
I don’t get up or move, but a seven year-old climbs into my covers and cozies up against me.
“I’m a koala,” she whispers into my back.
“I love you, baby koala,” I say back.
Deep sigh and some cuddles.
Next, I hear the voice of a third small creature, this one age nine, asking about breakfast, and my baby koala scrambles off to some start-the-day play.
Our dog Daphne, a fourth small animal, shakes a bit of sleep off in the corner of the room, but she too starts the day slowly. We are both too warm, sleepy, and content to move with speed.
I push up from bed, take to the rolling walker sitting beside, and roll toward the bathroom, bladder full from the night. I have a moment of aloneness, my cyborg body and me, before the rest of the day goes on.
We watch the ocean for terrorists, but the ocean’s tides still rise and fall.
