And today it is easy enough to see, at the revival meetings of Protestant fundamentalists, the counting of the checks and bills before the laying on of hands by the preacher has even been completed. Again, the spectacle is a shameless one, with the Calvinists having in some ways replaced Rome as the most exorbitant holy fund–raisers. And—before we run out of contradictions— it seems doubly absurd for a Calvinist to take an interest in divine intercession. The founding constitution of the Presbyterian Church famously proclaimed from Philadelphia that “by the decree of God, for the manifestation of his glory, some men and angels are predestinated unto everlasting life and others foreordained for everlasting death . . . without any foresight of faith or good works, or perseverance in either of them, or any other thing in the creature, as conditions.” Plainly put, this means that it does not matter whether you try to lead a holy life, or even succeed in doing so. Random caprice will still determine whether or not you receive a heavenly reward.In these circumstances, the emptiness of prayer is almost the least of it. Beyond that minor futility, the religion which treats its flock as a credulous plaything offers one of the cruelest spectacles that can be imagined: a human being in fear and doubt who is openly exploited to believe in the impossible. In the argument over prayer, then, please do not be shocked if it is we atheists who wear the pitying look as any moment of moral crisis threatens to draw near.
III
I figure she should take care of herself, put herself in a deep freeze, and in a year or two in all likelihood they’ll develop a pill that’ll clear this up simple as a common cold. Already, you know, some of these cortisones; but the doctor tells us they don’t know but what the side effects may be worse. You know: the big C. My figuring is, take the chance, they’re just about ready to lick cancer anyway and with these transplants pretty soon they can replace your whole insides.
— Mr.Angstrom Sr. in John Updike’s Rabbit Redux (1971)
UPDIKE ’S NOVEL WAS SET IN WHAT MIGHT BE called the optimistic years of the Nixon administration: the time of the Apollo mission and the birth of that all–American can-do expression that begins, “If we can put a man on the moon . . .” In January 1971, Senators Kennedy and Javits sponsored the “Conquest of Cancer Act,” and by December of that year Richard Nixon had signed something like it into law, along with huge federal appropriations. The talk was all of a “War on Cancer.”
Four decades later, those other glorious “wars,” on poverty and drugs and terror, combine to mock such rhetoric, and, as often as I am encouraged to “battle” my own tumor, I can’t shake the feeling that it is the cancer that is making war on me. The dread with which it is discussed—“the big C”—is still almost superstitious. So is the ever whispered hope of a new treatment or cure.
In her famous essay on Hollywood, Pauline Kael described it as a place where you could die of encouragement. That may still be true of Tinseltown; in Tumortown you sometimes feel that you may expire from sheer advice. A lot of it comes free and unsolicited. I must, without delay, begin ingesting the granulated essence of the peach pit (or is it the apricot?), a sovereign remedy known to ancient civilizations but now covered up by greedy modern doctors. Another correspondent urges heaping doses of testosterone supplements, perhaps as a morale-booster. Or I must find ways of opening certain chakras and putting myself in an appropriately receptive mental state. Macrobiotic or vegan diets will be all I require for nourishment during this experience. And don’t laugh at poor old Mr. Angstrom above: Somebody has written to me from a famous university to suggest that I have myself cryonically or cryogenically frozen against the day when the magic bullet, or whatever it is, has been devised. (When I failed to reply to this, I got a second missive, suggesting that I freeze at least my brain so that its cortex could be appreciated by posterity. Well, I mean to say, gosh, thanks awfully.) As against all that, I did get a kind note from a Cheyenne–Arapaho friend of mine, saying that everyone she knew who had resorted to tribal remedies had died almost immediately, and suggesting that if I was offered any Native American medicines I should “move as fast as possible in the opposite direction.” Some advice can actually be taken.
Even in the world of sanity and modernity, though, it often cannot. Extremely well–informed people also get in touch to insist that there is really only one doctor, or only one clinic. These physicians and facilities are as far apart as Cleveland and Kyoto. Even if I had possession of my own aircraft, I would never be able to assure myself that I had tried everyone, let alone everything. The citizens of Tumortown are forever assailed with cures, and rumors of cures. I actually did take myself to one grand palazzo of a clinic in the richer part of the stricken city, which I will not name because all I got from it was a long and dull exposition of what I already knew plus (while lying on one of the fabled establishment’s examination tables) a bugbite that briefly doubled the size of my left hand: completely surplus even to my pre–cancerous requirements but a real irritation to someone with a chemically corroded immune system.
Still and all, this is both an exhilarating and a melancholy time to have a cancer like mine. Exhilarating, because my calm and scholarly oncologist, Dr. Frederick Smith, can design a chemo–cocktail that has already shrunk some of my secondary tumors, and can “tweak” said cocktail to minimize certain nasty side effects. That wouldn’t have been possible when Updike was writing his book or when Nixon was proclaiming his “war.” But melancholy, too, because new peaks of medicine are rising and new treatments beginning to be glimpsed, and they have probably come too late for me.
For example, I was encouraged to learn of a new “immunotherapy protocol,” evolved by Drs. Steven Rosenberg and Nicholas Restifo at the National Cancer Institute. Actually, the word “encouraged” is an understatement. I was hugely excited. It is now possible to remove T cells from the blood, subject them to a process of genetic engineering, and then reinject them to attack the malignancy. “Some of this may sound like space–age medicine,” wrote Dr. Restifo, as if he, too, had been rereading Updike, “but we have treated well over 100 patients with gene–engineered T cells, and have treated over 20 patients with the exact approach that I am suggesting may be applicable to your case.” There was a catch, and it involved a “match.” My tumor had to express a protein called NY-ESO-1, and my immune cells had to have a particular molecule named HLA–A2.Given this pairing, the immune system could be charged up to resist the tumor. The odds looked good, in that half of those with European or Caucasian genes do have that very molecule. And my tumor when analyzed did have the protein! But my immune cells declined to identify as sufficiently “Caucasian. Other similar trials are under review by the Food and Drug Administration, but I am in a bit of a hurry, and I can’t forget the feeling of flatness that I experienced when I received the news.
Best perhaps to get these false hopes behind one quickly: It was in the same week that I was told that I didn’t have the necessary mutations in my tumor to qualify for any other of the “targeted” cancer therapies currently on offer. A night or so later I was emailed by perhaps fifty friends because 60 Minutes had run a segment about the “tissue engineering,” by way of stem cells, of a man with a cancerous esophagus. He had effectively been medically enabled to “grow” a new one. I excitedly contacted my friend Dr. Collins, father of genome-based treatment, who gently but firmly told me that my cancer has spread too far beyond my esophagus to be treatable by such a means.
Analyzing the blues that I developed during those lousy seven days, I discovered that I felt cheated as well as disappointed. “Until you have done something for humanity,” wrote the great American educator Horace Mann, “you should be ashamed to die.” I would have happily offered myself as an experimental subject for new drugs or new surgeries, partly of course in the hope that they might salvage me, but also on the Mann principle. And I didn’t even qualify for the adventure. So I have to trudge on with the chemo routine, augmented if it proves worthwhile by radiation and perhaps the much–discussed CyberKnife f
or a surgical intervention: both of these things; near–miraculous when compared with the recent past.
There is an even longer shot that I do propose to attempt, even though its likely efficacy lies at the outer limits of probability. I am going to try to have my entire DNA “sequenced,” along with the genome of my tumor. Francis Collins was typically sober in his evaluation of the usefulness of this. If the two sequencings could be performed, he wrote to me, “it could be clearly determined what mutations were present in the cancer that is causing it to grow. The potential for discovering mutations in the cancer cells that could lead to a new therapeutic idea is uncertain—this is at the very frontier of cancer research right now.” Partly for that reason, as he advised me, the cost of having it done is also very steep at the moment. But to judge by my correspondence, practically everybody in this country has either had cancer or has a friend or relative who has been a victim of it. So perhaps I will be able to contribute a little bit to enlarging the knowledge that will help future generations.
I say “perhaps” partly because Francis has now had to lay aside a lot of his pioneering work, in order to defend his profession from a legal blockade of its most promising avenue of endeavor. Even as he and I were having those partly thrilling and partly lowering conversations, last August a federal judge in Washington, D.C., ordered a halt to all government expenditure on embryonic stem–cell research. Judge Royce Lamberth was responding to a suit from supporters of the so–called Dickey–Wicker Amendment, named for the Republican duo who in 1995 managed to forbid federal spending on any research that employs a human embryo. As a believing Christian, Francis is squeamish about the creation for research purposes of these nonsentient cell clumps (as, if you care, am I), but he was hoping for good work to result from the use of already existing embryos, originally created for in vitro fertilization. These embryos are going nowhere as it is. But now religious maniacs strive to forbid even their use, which would help what the same maniacs regard as the unformed embryo’s fellow humans! The politicized sponsors of this pseudoscientific nonsense should be ashamed to live, let alone die. If you want to take part in the “war” against cancer, and other terrible maladies, too, then join the battle against their lethal stupidity.
IV
EVER SINCE I WAS FELLED IN MID–BOOK TOUR IN THE summer of 2010, I have adored and seized all chances to play catch-up and to keep as many engagements as I can. Debating and lecturing are part of the breath of life to me, and I take deep drafts whenever and wherever possible. I also truly enjoy the face time with you, dear reader, whether or not you bring a receipt for a shiny new copy of my memoirs. But here is what happened a few weeks ago. Picture, if you will, me sitting at my table, approached by a motherly–looking woman (a key constituent of my demographic):
SHE: I was so sorry to hear you had been ill.
ME: Thank you for saying so.
SHE: A cousin of mine had cancer.
ME: Oh, I am sorry to hear that.
SHE: [As the line of customers lengthens behind her] Yes, in his liver.
ME: That’s never good.
SHE: But it went away, after the doctors had told him it was incurable.
ME: Well, that’s what we all want to hear.
SHE: [With those farther back in line now showing signs of impatience] Yes. But then it came back, much worse than before.
ME: Oh, how dreadful.
SHE: And then he died. It was agonizing.
Agonizing. Seemed to take him forever.
ME: [Beginning to search for words] . . .
SHE: Of course, he was a lifelong homosexual.
ME: [Not quite finding the words, and not wishing to sound stupid by echoing “of course” ] . . .
SHE: And his whole immediate family disowned him. He died virtually alone.
ME: Well, I hardly know what to . . .
SHE: Anyway, I just wanted you to know that I understand exactly what you are going through.
This was a surprisingly exhausting encounter, without which I could easily have done. It made me wonder if perhaps there was room for a short handbook of cancer etiquette. This would apply to sufferers as well as to sympathizers. After all, I have hardly been reticent about my own malady. But nor do I walk around sporting a huge lapel button that reads, ASK ME ABOUT STAGE FOUR METASTASIZED ESOPHAGEAL CANCER, AND ONLY ABOUT THAT. In truth, if you can’t bring me news about that and that alone, and about what happens when lymph nodes and lung may be involved, I am not all that interested or all that knowledgeable. One almost develops a kind of elitism about the uniqueness of one’s own personal disorder. So, if your own first- or secondhand tale is about some other organs, you might want to consider telling it sparingly, or at least more selectively. This suggestion applies whether the story is intensely depressing and lowering to the spirit— see above— or whether it is intended to convey uplift and optimism: “My grandmother was diagnosed with terminal melanoma of the G-spot and they just about gave up on her. But she hung in there and took huge doses of chemotherapy and radiation at the same time, and the last postcard we had was from her at the top of Mount Everest.” Once again, your narrative may fail to grip if you haven’t taken any care to find out how well or badly your audience member is faring (or feeling).
It’s normally agreed that the question “How are you?” doesn’t put you on your oath to give a full or honest answer. So when asked these days, I tend to say something cryptic like, “A bit early to say.” (If it’s the wonderful staff at my oncology clinic who inquire, I sometimes go so far as to respond, “I seem to have cancer today.”) Nobody wants to be told about the countless minor horrors and humiliations that become facts of “life” when your body turns from being a friend to being a foe: the boring switch from chronic constipation to its sudden dramatic opposite; the equally nasty double cross of feeling acute hunger while fearing even the scent of food; the absolute misery of gut–wringing nausea on an utterly empty stomach; or the pathetic discovery that hair loss extends to the disappearance of the follicles in your nostrils, and thus to the childish and irritating phenomenon of a permanently runny nose. Sorry, but you did ask . . . It’s no fun to appreciate to the full the truth of the materialist proposition that I don’t have a body, I am a body.
But it’s not really possible to adopt a stance of “Don’t ask, don’t tell,” either. Like its original, this is a prescription for hypocrisy and double standards. Friends and relatives, obviously, don’t really have the option of not making kind inquiries. One way of trying to put them at their ease is to be as candid as possible and not to adopt any sort of euphemism or denial. The swiftest way of doing this is to note that the thing about Stage Four is that there is no such thing as Stage Five. Quite rightly, some take me up on it. I recently had to accept that I wasn’t going to be able to attend my niece’s wedding, in my old hometown and former university in Oxford. This depressed me for more than one reason, and an especially close friend inquired, “Is it that you’re afraid you’ll never see England again?” As it happens he was exactly right to ask, and it had been precisely that which had been bothering me, but I was unreasonably shocked by his bluntness. I’ll do the facing of hard facts, thanks. Don’t you be doing it too. And yet I had absolutely invited the question. Telling someone else, with deliberate realism, that once I’d had a few more scans and treatments I might be told by the doctors that things from now on could be mainly a matter of “management,” I again had the wind knocked out of me when she said, “Yes, I suppose a time comes when you have to consider letting go.” How true, and how crisp a summary of what I had just said myself. But again there was the unreasonable urge to have a kind of monopoly on, or a sort of veto over, what was actually sayable. Cancer victimhood contains a permanent temptation to be self–centered and even solipsistic.
So my proposed etiquette handbook would impose duties on me as well as upon those who say too much, or too little, in an attempt to cover the inevitable awkwardness in diplomatic relations between Tumortown a
nd its neighbors. If you want an instance of exactly how not to be an envoy from the former, I would offer you both the book and the video of The Last Lecture. It would be in bad taste to say that this— a pre-recorded farewell by the late professor Randy Pausch— had “gone viral” on the Internet, but so it has. It should bear its own health warning: so sugary that you may need an insulin shot to withstand it. Pausch used to work for Disney and it shows. He includes a whole section in defense of cliché, not omitting, “Other than that, Mrs. Lincoln, how was the play?” The words “kid” or “childhood” and “dream” are employed as if for the very first time. (“Anyone who uses ‘childhood’ and ‘dream’ in the same sentence usually gets my attention.”) Pausch taught at Carnegie Mellon, but it’s the Dale Carnegie note that he likes to strike. (“Brick walls are there for a reason . . . to give us a chance to show how badly we want something.”) Of course, you don’t have to read Pausch’s book, but many students and colleagues did have to attend the lecture, at which Pausch did push-ups, showed home videos, mugged for the camera, and generally joshed his head off. It ought to be an offense to be excruciating and unfunny in circumstances where your audience is almost morally obliged to enthuse.This was as much an intrusion, in its way, as that of the relentless motherly persecutor with whom I began. As the populations of Tumortown and Wellville continue to swell and to “interact,” there’s a growing need for ground rules that prevent us from inflicting ourselves upon one another.