The years of living cancerously

Just one entry since the last day of 2022? There must have been issues.

Well, yeah. The present entry will go on at considerable length as we make up for the deficit.

This weekend marks two years since the spousette received a startling email from CæsarCare, the HMO into the coffers of which I have poured treasure these (counts on fingers) forty-seven years past. C-Care used to be a bargain, but early in the present century they appear to have filled their board of directors with Enron alumni, and after that for a long time their premiums skyrocketed from year to year, generally eating up most of my modest salary increases.

Lina had been feeling a little unwell for a period of months, and C-Care was putting her off: “It’s probably a urinary tract infection.” She wanted a scan, and started pestering them that spring. Their response: “A scan? Sure thing. We’ve got an opening in August. August work for you?” Fortunately her “primary care physician” was able to intervene, and got her slotted in at the end of June.

We were prepared for “Nothing to see here,” or for “Something wrong; here’s what we need to do to fix it.” Instead the terse, impersonal email said “advanced metastatic peritoneal carcinomatosis,” which turned out to be as dire as it sounds. Also, words like “palliative” and “hospice” figured in the message.

You could have, as they say, knocked us over with a feather.

Hard upon this diagnosis, the disease, which had hitherto merely been tuning up, announced itself with a fanfare, full orchestra and a lightshow, the symptoms coming in backed by a vigorous horn section and kettledrums. She spent most of the next ten days in C-Care’s emergency wing a mile away as liters of “ascites” were drained from her abdomen.

Myself, I had no issues with C-Care when they reamed out my cardiac plumbing in 2016: they identified the problem and addressed it briskly; the treatment has ameliorated the issue to date—although lately I have the sense that the relevant arteries might be silting up anew—and according to the rather censorious surgeon who reproached me post-op for my tardiness in consulting the competent authorities, this could have been the last installment of Son of Urschleim, so I suppose that, the greedos on the C-Care board notwithstanding, I owe the outfit a life.

Still.

Lina was not pleased with them, particularly following her first consultation, once the initial crisis had passed, with the oncologist assigned to her. “There are no good outcomes here,” quoth the oncologist, which was and probably remains true, but the doctor’s affect suggested that she was keen to get this patient off her caseload and into some kind of palliative care that wouldn’t require regular supervision. And indeed, the literature we’d consulted at that point suggested that my wife would be well advised to finish up her estate planning before the end of the year.

An element of obduracy figures in Lina’s character, and she has never been one readily to accept “no” for an answer, and so she set about “doing her own research,” which fortunately was confined to reputable precincts: no quack cures, no crystal healing or suchlike. Her investigations suggested that nearby Stanford (Palo Alto) or distant Cedars-Sinai (West Hollywood) were her best bets for entities serious about treating patients rather than slotting them into hospice care. She was particularly intrigued at the prospect of a hyperthermic treatment, “HIPEC,” which has only lately been brought to bear on her condition, and which has yielded promising outcomes in a quarter of the patients so treated. C-Care was dismissive: we took the impression from their Doctor H that it was looked upon there as fringe medicine, even though Cedars and the Mayo Clinic appeared to regard it as a legitimate approach to treatment. Accordingly, we betook ourselves to West Hollywood for an initial consultation with young Doctor P, who looks just about old enough to shave but is possessed of a frank and appealing bedside manner. Doc P did not mince words, and advised us that L’s odds for getting through this were not great. He was lukewarm on HIPEC. “It goes in and out of favor. Lately it’s out.”

But wait! Also on the case is older Dr. M (I say “older” with Doc P as my baseline. Pretty much everyone we have encountered in the medical line has been noticeably younger than we are), the surgeon, who is a champion of HIPEC, and he persuades Dr. P that it’s worth a shot. And so, somewhat to my chagrin at the time, because I still entertained some faith, silly me, in my HMO, we committed to spending most of the next six months in the San Fernando Valley, as longtime readers of this blog—that would be me—will have been aware.

So, long stretches in a borrowed Northridge condo as Lina endures—fairly well, it must be said—chemotherapy, followed in November by surgery, Dr. M and a colleague attending, to scoop out her ladyparts, scrape the cancer from her peritoneum, and bathe her innards with a solution formulated to kill any rogue cells that might have eluded the scalpel. It was a daylong procedure, but toward the close Doc M excused himself from the operating theatre and visited me in the waiting room: “It went great. We could see where the tumors were, but no trace of where they still are.”

Well, yay. Lina was feeling pretty rugged in the immediate aftermath, but her characteristic cheer returned over the coming days. Dr. P was still not prepared to declare the patient cured, but allowed that we might look forward to a year of remission. Her “cancer numbers”—the blood antigen proteins present in her system, around 2500 at the onset of symptoms, were down about 95%. Yay, team! Yay HIPEC!

Except…early in 2023 the numbers began to climb anew. The magic bullet missed the target. Even Dr. P was surprised: he thought that the disease might lie doggo and demoralized for considerably longer before venturing again from its lair. Instead, barely a season elapsed before it came roaring back.

Lina wasn’t about to take this lying down. Doc P mentioned “Lenvima,” a pharmaceutical concoction, as a possible course of treatment. “It might be costly, though.” “How costly?” “I don’t know. Maybe a couple of thousand dollars a month.” Dr. P, bless him, clearly spends more time poring over medical journals than studying the annual reports of Big Pharma, because a thirty-day course of Lenvima retails for a cool $25K. We contemplated this figure glumly, reflecting how we’d have to cut down on our wild nights on the town, flinging C-notes to menials in our wake, to say nothing of our weekends flying out to the Côte d’Azur. But Lina always looks for an angle, and discovered that the manufacturer maintains a foundation for hard luck cases. After very little negotiation, it was established that the drug would be shipped here each month for…zip. Nada. Gratis. And there was much rejoicing.

Lenvima worked for a few months, until it didn’t. The efficacy waned; the side effects mounted. By November Lina was down to 89 pounds—forty down from her former weight—and frail, with little energy. “I was circling the drain,” she recalls today. At that point the supervising physicians switched her to a regimen based on a drug called “ENHERTU,” and this yielded dramatic advances: by January those cancer antigen numbers were down to 12 and then 9 (anything under 35 is considered to be within the “normal” range). She recovered not merely her strength but also half the lost poundage. Rejoicing was renewed.

“ENHERTU” worked until, yeah, until it didn’t (we thought “We’ve seen this movie before”). At the end of April the levels of CA-125, the dreaded “cancer antigen,” began to climb anew, and CæsarCare’s Dr. H, who has always seemed to us keen to drop Lina from her caseload, rather peremptorily discontinued it, as L didn’t learn until she appeared on the hospital premises for her scheduled infusion—C-Care ain’t great in points of communication. We’d remained in contact with Cedars, and the prospect of a “clinical trial” was held forth. We’d auditioned for one late in 2023, but were disqualified following a somewhat uncomfortable biopsy. This time we qualified and, again resuming our hegiras to Cedars-Sinai—four or five trips south since April—endured tests, scans, infusions, a daily regimen of pharmaceuticals following which, earlier in June, the Big Pharma “sponsor” advised the supervising physicians that we had washed out: the CA-125 numbers had skyrocketed to levels unseen in two years, which was not the result the shareholders were looking for (I am probably being unfair here: some useful data points were likely harvested).

We have since consulted with Doctor B, another C-Care oncologist, whose advice also does not conduce to optimism (“What is the outcome you’re looking for?” “Well, a cure, obviously.” “Not going to happen, I’m afraid.” “Yeah, but it was worth a try”), but who has advised us to return to the “ENHERTU” regimen. Given that the disease has been romping unimpeded for two months, he feels that it will have, so to say, let down its guard, and that a renewed course of E will yield another interval of respite. During this consultation the possibility was mentioned, incidentally, that the discontinued course of treatment may not have merely failed to retard the progress of the cancer, but might actually have spurred it on: apparently this has been known to happen. L and I looked at one another with the same thought—and this has not been mentioned hitherto why?—and then shrugged: “Forget it, Jake—it’s Cancertown.”

And here we are, two years in. Lina is dealing, alas, with what has proved a Houdini among maladies, an already rare cancer this particular variant of which possesses the uncanny knack of wriggling out from any restraints—straitjacket, locked steamer trunk bound by chains in twenty fathoms of shark-infested water—with which medical science may attempt to bind it. It appears that this will not end well.

Still, at the moment she soldiers on, not quite unbowed, but like the late Ravi (to be discussed anon), still enjoying life more than not. Dr. M (although we and Cedars-Sinai have likely finished up) reminds us that researchers are staying up late attempting to devise more magic bullets. The horse could learn to sing. For the rest, I am put in mind of the personal credo I have borrowed from John Updike: “We do, after all, survive every moment, except the last.” And while I am mindful that grief is poised to roar down the mountainside like an avalanche, well, we must live day to day, and all of us, as Samuel Beckett once put it, “die one day like any other day, only shorter.”