BODY SO TUMORLICIOUS

How to Pee on the Beach

Neuroendocrine cancer is a finned beast — one I have managed to outswim nearly as often as I make water

He calls it the “sneak-a-piss.” It’s the Californian’s way to take a leak.

My surfer husband taught me the pee-by-the-sea trick.

Like the times back in college that he taught me how to make spaghetti, to drive a stick shift (adequately, at least), and to wait 24 hours before responding angrily to someone via email, Joe taught me something invaluable.

I still can’t check my own oil. But that’s because my brain refuses to learn something mechanical. Besides, Joe will always be there to fix my car, right?

Right?

Sand-Pissing

Sand-pissing particulars are simple:

• Sit on the edge of the last ridge of dry sand where the shore slopes to the sea
• Let nature do its thing
• Pro Tip: time peeing with the waves
• Pro Tip 2: open your wetsuit’s ankle with one digit, letting the urine course easily into the great blue open

Santa Cruz with Six Kids

That’s where we live. But, I usually don’t head to the beach first thing, unless Joe drags me there.

That’s partly because a large, horizontal scar across my mid-throat greets me in the bathroom mirror — evidence of one total- and two subtotal parathyroidectomies. The latest one was a rousing success! Thanks to Dr. Electron Kebebew [external link] from Stanford, I am bone-tired no more and my tumorlicious neck glands are gone.

I have lower blood calcium levels now and far less exhaustion. I swallow a couple of horse pills totaling 1,250 mg of Calcium a day, but this is a trifling. I try to conserve my energy for our sons and daughter — I’m determined to make it through the littles’ bedtime hour without needing to lie down for a rest of my own. For more than a decade and a half I have needed a lot of rest, and my family has paid the price.

Real Things that have Happened While Mom was Napping

• Our oldest three kids, 4, 3, and 2 at the time, were supposed to be watching Finding Nemo. Instead, they got into my rainbow set of 56 Sharpies and ruined $2,100 worth of white carpeting in our rental house. We hired a carpet guy to get the stains out, but all he could do was to repeat, “This is…substantial.”
• Our fourth child, age 3 at the time, was supposed to be watching Finding Nemo. Instead, he opened our drawer-style microwave, put in a ceramic plate, and hit “77:77. START.” He didn’t start a house fire, but the plate cracked! And the microwave was never the same.

If there’s anything I learned from these incidents, it’s that Nemo is a piss-poor babysitter.

And I’m not very replaceable, it seems.

What’s Next?

Will I undergo chemo and radiation for my other lumps and bumps? Nobody knows if, or when. Neuroendocrine cancer — Multiple Endocrine Neoplasia — Type 1 — is weird. “Cancer in slow motion,” as it’s been called. And for me it’s inherited, like my light brown hair and long-ass monkey toes. There aren’t good reasons to panic but there are no promises or reliable prognostics for MEN1, either.

Like an overflowing beach toilet, the headspace around the foul treatments I may eventually need is a place I’d rather not inhabit.

For now, it’s a whole lot of nothing — the white-coats call it “watchful waiting.” This means they watch your tumors grow (or not) with MRI’s and CT’s. And try not to cut things out of your body unless some lump or bump is kicking out so much hormone that it’s really sinking its teeth into your life. For all the virtues of academic medicine, sometimes the specialists don’t know what the hell is going to happen. Traditional cancer treatments don’t tend to help.

To some extent, the doctors let nature take its course.

Unlike my husband, I am no surfer. Somehow I’ll have to figure out how to grind through the blue barrels of treatment when they really threaten to crash down.

I’ve got another scar, too. There’s a three-inch, horizontal slice between two of my left posterior ribs — the mark of a 2012 cardiothoracic surgery to remove a tumor that was wrapped around my duodenum. Strange. And I managed to birth three more babies after that.

People notice the scars. Should I tell them I was slashed with a murderous pirate’s hook and cast into Monterey Bay? Or steak-knifed by the serrated teeth of a Great White, while narrowly escaping a watery death?

The truth is just as badass as any fiction I could make.

Some people are born with “cancer,” and I am one of them. It’s as plain as the mole on my face —

MEN1 is not catastrophic in most cases, but it is incurable. It’s an inherited cancer syndrome that involves a mutated tumor suppressor gene. For non-science majors, a mutated tumor suppressor = kinda bad. And the faulty protein that results is an important one, as far as proteins go — it’s potentially found in every neuroendocrine tissue. So while there are three “classic” MEN1 tumors — those that pop up in the parathyroid glands, pancreas, and pituitary — you can actually have tumor growth throughout the body with this syndrome.

It’s the strangest thing. You can have metastatic disease and live a long time. Sometimes people who are 55–65 years old don’t even know they have it¹

The neuroendocrine system controls things like blood pressure, homeostasis, metabolism, and the ability to make babies, among other things. As a tween I was told I’d be infertile, and I still go to the doctor a lot. (I have bipolar disorder, too.) But six healthy children, a f*cking barge-load of genetic testing, and almost 30 years later, I have learned to let go of the need to know much.

I have already decided that MEN1 won’t kill me until I am “old” anyway; my doctors have agreed that I’ll have a normal lifespan. Maybe I’ll die of a heart attack instead, during sex, like Rose Nylund’s late spouse on The Golden Girls. I am sure Joe and I could learn that “helicopter” sex move together that did Rose’s elderly husband in.

That’s my top choice, anyway.

Who knows?

To try to grasp how many grains remain in these coastal sands of time would be like pissin’ in the Pacific winds.

My Action Plan

• Get scans.
• Get on the sand.
• Pee on the beach, thanking the higher powers-that-be for good health insurance.
• Rinse and repeat.

I sit on the shore with Joe and the kids, and we look outward together at the water, scanning the surface for fins. We watch the horizon for the peaceful rays of a setting sun. My next round of imaging will happen next year; we wait with stolen time. And we empty our bladders into the damp sand when need be, breathing deeply and feeling the warm offshore breeze.

References

¹ https://www.hopkinsmedicine.org/health/conditions-and-diseases/carcinoid-tumor

Special thanks to Michael Burg, MD (Satire Sommelier) for editing this, and cluing me in that this story isn’t so much funny as it is existential dark humor.

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