I don’t know about you, but some things I’d just as soon not talk about. Money, for starters. Mine or anybody else’s. How much or little a scratch a person has is of no interest to me, unless it’s a matter of getting clear on whether she can cover the big blind in the next hand of Hold ‘em.
Health is another thing I don’t care to discuss. I know, I know. Men don’t care to discuss anything. Anything important. But talking can be, well, overdone, is the thing. I mean, Donald Trump talks a lot. Wouldn’t you enjoy hearing him shut up now and then?
In a case where I’m suffering some worn out dismals, talking about it won’t make me feel better, and it sure as hell is not going to make you feel better. So what good would it be, to share around the campfire? Generally, then, I have always felt it was better to keep your own counsel about your own health.
But I do have to say this much, to the folks here. What is it lately with all the cancer? Seems every day there’s a new diary, scrolling along the right hand side of the page, about cancer. And not the figurative, symbolic carcinomas, the ones metastasizing throughout all our institutions, brought on by years of untreated assholeism and testosterone contamination, but the real thing, Big C, the Diagnosis. So what’s up with that? What, exactly, is the que pas with all the cancer diaries?
It could be I’m just sensitive about this right now. Might be the topic of how it feels, for you, or someone you love, or someone you know to be reliably informed they have a tumor growing inside of them is something I’ve been thinking about, a little. For some reason.
Be that as it may, the diaries I’ve been seeing go on to recount the protocols and logistics of what happens, to the diagnosee or loved one, medically or psychologically, spiritually or bureaucratically. By way, you know, of being a guide on how to handle mortality sidling up and tap on bony finger on the shoulder of you, or someone you love, or someone you maybe enjoyed a good rich bowl of green chile with. The diaries run through discussions of hospitals, doctors, nurses, insurance companies, and all the inevitably impersonal corporate dealings with your Very Personal Shit. How without getting involved, somebody informs you that you got the Shit; how the ones at the front desk treat you like Shit; how you can be reduced by the Shit and its medical multivariate calculus to find there is no one to complain to who might be even a little able to do something about it, or even be vaguely interested.
Of course, having lots of different possible angles of approach on any kind of trouble is, by and large, helpful. This potential range of misery can certainly use the company. So having all these diaries is a good thing.
I have also made it my business to read every one of the comments to these diaries. Mostly they are full of heartfelt encouragement, many from people who themselves have been caught in this mangle, or love someone who has. Much of it is couched in martial terms—“Kick its ass!” “Keep fighting!” “Hang in there!” Every one welcome, and most all of them very sweet.
Unlike some other reactions you might get, from people you actually know. Who, you can tell, want to know what kind of monkey business you have been up to that landed you in this mess. I mean, you must have done something. You might have smoked, once upon a time. Or been overly fond of pie. Or followed Julia Child’s advice on gin, red meat, and butter. Maybe you declined an offer to take up barre or trail running in favor of watching the Seahawks lose to the Packers on TV.
Whatever it was. Because it was surely something. There is a reason the “miserable comforters” who come sit with Job are so familiar to us, to this day. For all our advanced civilization, people these days are just like them. They can’t believe cancer wouldn’t follow directly from some sin, of commission, or omission. And those are the people who care about you.
The ones that don’t, the ones who think the best part of an afterlife will be discovering who didn’t deserve it—your right-wing evangelical brother, for instance—will no doubt shake his head gravely, before dropping his own propter hoc on your head. “I mean, what’d you expect? First thing, you start driftin away from fam’ly. Then maybe you dabble in evolution, something like that, climate change, I don’t know what all. ‘Fore you know it—and you know I don’t say this to be coldblooded—you come down with something like this. C’mon, what did you think was gonna happen? The wages of sin, wages of sin.”
So. Lots of cancer diaries. Lots of them. And, well, I guess I will add my own little brick to this wall.
Some things I have observed (from the inside) about the world of cancer. First off, it’s both a deeply familiar and dreadfully shocking surprise when you get the news. Of course you knew this would happen, someday. And yet how could it?
Then too, the professional people you deal with after a diagnosis are two paradoxical things at once: they are not as nice as they could be, and also a lot nicer than you have any right to expect. Because, after all, they deal with cancer—every single day, multiple times a day. Their hearts might just curl up in a whimpering ball if they did not help, and also if they did not keep some distance.
Also, it is guaranteed that something always doesn’t go the way you hoped or the way they said it would. This carries a valuable lesson: do not be completely sold on the infallibility of anything a doctor might tell you. I mean, I’m partly in this mess because of the guidance of a decade’s worth of my GPs, who, on the advice of a 2011 report from the United States Preventive Services Task Force did not support regular PSA tests. Also, in my case, I had undergone a biopsy in the mid-2000s because of a “funny shape” in a digital exam, so I thought I was clear and free. (“There’s nothing wrong with you the urologist who performed the biopsy said, you’ve just got a funny shape down there!”) But in the spring of this year, as part of a routine exam, the phlebotomist asked me if along with the other blood work, I might want to throw a PSA in the mix. Sure, I said, what the hell.
What the hell, indeed! Damn thing came back at 35. Now, normal is around 4, so that was a skosh high.
Now, I like my current doctors. Hearts seem to be in the right place. They’ve offered up what they think to be the best treatment, given the extent and intensity of the disease. And that brings us to the fourth thing. Doctors will do all they can. All you can stand, and then some. They will keep trying and trying, long past time when what they’re doing has any meaningful effect on how much what you might call what you’re going through living. It’s just who they are. But for me, a good old boy said it best, regarding modern medicine: if it works I’m not against it, and if it doesn’t I didn’t think it would.
At any rate, I have consented to a round of treatments, involving three different modes, the first being hormone deprivation. The aim there is to reduce the testosterone that seems—they keep saying seems; doesn’t anyone around here know, or at least have a pretty damn good idea?—to assist the little flakes of cancer in floating away and attaching themselves to some other part of you where they will cause more and bigger trouble. They give you a shot in the butt that takes testosterone out of production. Which they did, three months ago.
You want to know how much that shot costs? I can’t say the words.
(In all this they haven’t once mentioned macrophages, which now and then do the same thing, help cancer cells along, give them a leg up. They haven’t mentioned macrophages, because they are part of your immune system. Which you are supposed to work on keeping healthy, because it is supposed to help. What on earth is going on around here, anyway?)
Without the presence of the big T, some effects can occur. I am tired, at times. Maybe that explains why my mom would sink down sometimes on a couch and sigh out loud. It could also have been four boys, I don’t know. But I have also known some women—who were without a whole lot of testosterone, as far as I know—who were anything but tired. Women, in fact, who tired you out. My friend Barbara, for instance. Or Kathy Griffin. When I’m tired it feels a little like hanging around Kathy Griffin 24 hours a day.
I am not as buff. But as what? As my young self, or myself three months ago? Can I get a show of hands from anyone who cares?
Hot flashes. I don’t even know, even after having lived with a woman who went through years of them, what these are, exactly. But from the firsthand knowledge I now have, I can say this: it gets HOT in here.
Moods, which I have mostly thought of as a waste of time, unless they were good. People who described themselves, or were described by other people, as moody, I have always thought were looking for an excuse to act like shits, which struck me as a lazy thing to do. Perhaps I will yet discover, as I did once with test anxiety, that there is really something to it. If so, I am very sorry to all moody people, in advance.
I have not gained the ability to hit, at last, those notes that come so easily to Paul McCartney. “She…is…lea-ving…home, bye-bye.” Even though that would seem a little bit fair.
End of August, we switched to focused radiation, and then this week to high-dose brachytherapy (which is the temporary placement and then quick removal of radioactive seeds inside a person).
I’ve agreed, grudgingly, to go along with this program. But I have to say, and so I will right now, there are limits. The central question touching on those limits is this. How much is it, exactly, am I willing to stand?
From lots of the comments to the cancer diaries here, I believe the conventional answer is: Any amount, so long as I don’t die.
That answer’s not very satisfactory or logical, over the long haul. I mean, we all owe a debt incurred when we were born. And to me, it also fails to take into account the personal calculation of your own private all-important Shit-to-Worth ratio, a relation nobody else but you can possibly know.
As T-Bone Burnett has it
Scientists guess which is worse we will ask
The medicine or the disease
The frightening thing is not dying
The frightening thing is not living
They told me this course of action is as good a way as they’ve come up with. So I have told them, have at it. Give it your best shot. Then, sometime after the first of November, we’ll see. It promises to be pretty binary. Either it’ll work or it won’t.
And if it fails, we will call it done. Because if the best you’ve got doesn’t work, why would I go for second best?
I don’t feel particularly put upon by this reality. It isn’t like if somebody sees my obituary in the paper, they will cry out, “My god, what happened?” I am, as Barbara Ehrenreich has pointed out, at an age when it would not be unnatural to die. Maybe not all that welcome, but certainly not unnatural.
As a sailor in wartime said, you’ll get yours one day, but you’re never going to know that it’s the day when you wake up in the morning. But you know, if it is the day, then you face what comes like a hero, and if it isn’t the day, then it’s a waste of your life worrying about it.
Besides, I am not seeking the stock obituary, the one that reads, “He succumbed after a valiant battle against iatrogenic cytotoxicosis.” Right. Most everyone who knew me would read a thing like that and say, “Foo. He never had a valiant moment his whole life. Stubborn? Well, now. That was a person who could do him some stubborn. But valiant? Nope. Most you could say is ornery, I guess, in a well-meaning, sure, stubborn way. Sincerely stubborn, you could say, running to mulish. But no way valiant.”
It is a fact I have been playing with house money since my heart attack (which should have killed me) and my fall with the running chainsaw from the ladder onto my head (which should have killed me). My 2nd rule: do not alter your rules just because of a change in windspeed or direction. My 1st rule? Eat and drink and smoke cigars and laugh like there’s no tomorrow until there isn’t one. Oh, and be grateful.
Which brings me to dying like a dog.
When my beloved boxer, Buster, was in his last days, we took from the internet a checklist of Quality of Life indicators to help us decide when it was no longer humane to insist he keep living just to keep us company. As the American Veterinary Medical Association Guidelines for the Euthanasia of Animals directs: it is “the right course to spare [an] animal from what is to come … if medical intervention would only prolong a terminal condition, or if current health conditions cannot be successfully mitigated.” Buster died a dignified dog, who lived right up to where he really couldn’t anymore, with conditions that could not be mitigated, but did not yet make him excruciatingly miserable.
Why shouldn’t I have the same dignity? Why is human life not to be relinquished until you have suffered enough? And why isn’t that decision mine? Sure, I might, either out of depression, or pain that I might think would never pass but did after all, make the wrong call, and die too early. But medicine, as it currently regards me, will for damn sure make the wrong call and wring every ounce of juice out of me, not letting me peg out until far after it was too late. I’d like to be lucky enough to die a good death. To be aware that the day was in fact a good day to die. Not to be hoping somebody will pull these goddamn wires out of my arm, but to say what my friend Lewie’s grandmother said with her last breath: “Ain’t this the berries?”
Of course another friend says you never know how you’re going to feelabut something that big beforehand. It might be harder to follow through on a desire to go out on your terms than you think, even knowing that death isn’t an enemy but a necessary and lovely part of this living world.
In response to cancer diaries, commenters often say, “I am praying for you.” I am grateful to be a small part of that caring community. But for my money, anyone wants to put in a prayer for me, I’d like to ask that I not lose my nerve, if it comes down to where I need it.