I'm a cancer guy?
Face to face with two grand misfortunes: An incurable, potentially life-threatening disease, and having to call Blue Cross when they are Experiencing An Unusually High Volume of Calls.
Most of my adult life, I did not have health insurance. If I got injured or sick, I just powered through it. If I needed dental work—like really, really needed it—I took out a new credit card and maxed it out.1
When I reached my 30s and finally got a job with benefits, I avoided dealing with insurance. I knew nothing of deductibles and group numbers, claims and copays, and other such necromancy. This turned out to be a very good reason to get married.2
In our household division of labor, I do housework, repair and maintenance, ironing (but not laundry) and maybe a little over half the meal prep and shopping. My wife manages the household budget and deals with healthcare and such.
This was great for me because I like cooking and cleaning, and she got the real shit work dealing with money and insurance crap. I lived in the bliss of medical ignorance. I won. I was happy.
Except for when I got one of those “Explanation of Benefits” notices.
You know those informational mailers that say in big, bold letters that only a dumbass can’t read:
Since they came addressed to me, I opened them. I saw dollars, chose not to see any other information, and spun out. Panicked, I summoned my wife and yelled about how many thousands and millions and billions we were expected to write a check to cover.
“Give me that,”
she would say, snatching the paper from my hand.
“And go sit over there.”
Yes’m.
After our umpteenth skirmish about what a puss I am, we decided that immersion therapy was the answer. Nowadays I take point for all things medical, whether those be denied claims, health savings account balances, or when the Cross and the Shield need to be subjected to a bit of the old ultra-violence.
Yeah, I can do it. I’d still rather scrub behind the stove with a toothbrush. But I get ahead of myself.
The intentional paralysis I had towards the healthcare bureaucracy drove my wife absolutely mental. Public service announcement: If you know someone with the patience of a saint, understand that said patience is indeed finite. For the love of Zeus, don’t run it out.
“You can do so much,”
she would say through clenched teeth.
“You ran a half-marathon!”
“You climbed Mount Whitney!”
“Why can’t you do this?”
I would hang my head in shame. “I don’t know,” I would say. “I just can’t.”
“Bullshit,”
she countered. And I know that in the still of the night, she would lay awake and cast her gaze to my sleeping form, and think to herself,
“I could have married an underwear model.”
People like me are why those Explanation of Benefits notices have these big, bold words:
In fact, I personally am the reason that EOBs have those big, bold words. You’re welcome.
The halcyon days of my blissful medical ignorance ended with prostate cancer. I was now a Cancer Guy. I spent a lot of time trying to figure out what that meant. Cancer was something that happened to other people. Everybody has that relative, right? My grandmother died of cancer.
It dissolved her body, and at the end there wasn’t much left of her to shuffle off this mortal coil. I suspect a lot of her suffering could have either been prevented or at least mitigated. Nevertheless, she did not escape cancer’s ruthless scythe.
One of my coworkers had lymphoma. He went to hell and back, and is now the strongest, toughest, manliest man’s man I know. He’s so macho that he can strut around being thoughtful and kind to everyone, showing real, true, goddamned empathy. When I think of him I weep at my own inadequacies.
Those are pretty much the only cancer stories that I’d ever heard told: tragedy or miracle. Brian’s Song or Inspiration Porn. Being the Cancer Guy means you die, or you lose your hair and everyone calls you a hero and then forgets about you, right?
As far as I knew, cancer = chemotherapy. Therein lay madness, and therein went my mind.
What I’d never heard about is the continuum of treatment short of chemo that millions of people muddle through after cancer plowed through their lives like a train derailment leaving a wake of destruction and robbing them of what they had, stealing their precious things and leaving them trying to fill the voids with thoughts of why didn’t we stop this from happening?
No time for a pity party. Time to enter the healthcare industrial complex, because some things you can’t pawn off on your spouse.
OK here’s some funny. I spent a lot of time going back and forth between my urologist and the lab where I get bloodwork done. The distance between the two offices, door to door, is 274.32 feet.
I could stand in front of the lab, throw a rock, and bust out my urologist’s windows. (Sounds like fun!) But the two office cannot directly talk to each other. They are not able to do that. That’s not how healthcare works in the US. Here is how information flows in our healthcare system:
A doctor, nurse, or physician-assistant gives verbal instructions to staff.
The staff person types up the instructions.
The document is printed out.
Then the document is faxed. Yes, as in fax machine.
The document is received by the other office via fax.
A staff person types the information on the paper into a computer.
Takin’ what they’re givin’ cuz I’m workin’ for a livin’. (Lewis, et al., 1982)
What happens after that is anybody’s guess. I think at some point it gets read, or disputed, or clarification is sought. In any case, documents are printed out.
Fun fact: You the patient cannot “save time” or “help out” by physically transporting information between components of the healthcare system. The documents you carry aren’t just invisible; they cannot be perceived. Why not?
Hardcopy is required because technology is not allowed, but technology is required to process the hardcopy.3 Because, security. Or HIPPA. Or whatever thing you will perceive as unchangeable so that you stop hassling the poor office person who’s just trying to do their job. Leave already.
Despite all this complexity, medical staff rarely make errors. You never hear about the billions of times per day they don’t make errors.
Back to the story:
At this point in time, I didn’t yet know for sure I had cancer. All I knew is that my annual routine bloodwork showed that the levels of Prostate Specific Antigen (PSA) in my bloodstream were abnormally high. I was faxed over to a urologist.
Being men of science, we both knew that before we could tell what was going on, we needed more data. And the finger. Interestingly enough, my man part was within normal size parameters. This was the first of many butthole incursions I experienced.
Next installment: The Butthole and the Biopsy, wherein oncological mischief confirms a prostatic malady of the cancerous ilk.
If I could travel back in time and give myself one message, it would not be “buy Apple stock,” or “be kinder,” or any such drivel. I would say “TAKE CARE OF YOUR TEETH YOU DUMBASS.” Then I would punch my teeth out, which serves me right for not taking proper care of them.
We were married before the Justice O’ Peace in 2000 in Texas. This barbaric land required one man and one woman to present a valid certificate of matrimony in order for the trailing spouse of the public university employee to enjoy munificence such as mammograms, basic well-woman care, or the privilege of being recognized as a human being with dignity and corporeality. We’ve come a long way since then. Right?
Mansplain time: This is what’s called a “paradox.”