Just Kidding
Today is the third anniversary of my cancer-excision surgery. The tumor, revealed by a routine colonoscopy in February, was early stage one, small and well-contained, and “moderately well-differentiated,” which placed it one small step above the lowest rank of concern. It’s location, in the lower GI tract, was textbook. It was a routine, low-risk case that should have had a routine outcome.
But mistakes were made, as they say, so what should have been a brief hiatus turned into a genuine saga, which continues to this day.
Things began going bad very quickly. The first warning sign occurred the day after surgery, with an episode of pain so overpowering that it nearly sent me into shock. The usual pain killers didn’t even make a dent. So after some discussion I was placed on intravenous dilaudid.
They do not do this lightly. For those who don’t know their pain meds, dilaudid is one of the heavy hitters. Roughly ten times stronger than morphine, it’s the stuff they give terminal cancer patients near the end. Dilaudid controls pain very effectively alright, with only minor psychoactive effects. But if you are on it for any length of time, you become physiologically dependent on it, and the withdrawal is brutal. I would eventually learn this the hard way.
There’s no experience quite like receiving an intravenous injection of this powerful drug. Two seconds after the nurse pushes the plunger you can feel it, tracing the path of your circulatory system. Up the axillary vein, into the subclavian, on to the superior vena cava, thence to the pulmonary vein, which becomes the pulmonary artery, thence to the heart, which disperses the drug throughout the body. The process takes maybe thirty seconds. It is a LONG thirty seconds.
The first flush of the drug is anything but pleasant. You sense that something major is definitely happening; could be either good or bad, and early indicators are mixed. Your muscles tighten up and your respiration and heart rate soar as you brace for impact. You fear the worst. But suddenly: blessed sweet deliverance. You might even weep with relief.
In the blink of an eye, the pain, which had been your closest associate, saturating your consciousness, inescapable because of its location at the center of your being, is displaced. It still existed, of course, but whereas a moment ago it had been RIGHT HERE, now it was over yonder a spell, safely distant. You could see it, make out its contours, wave hello to it. But for the moment, at least, it was muted, remote, almost an abstraction.
The upside of intravenous delivery is nearly instant relief when you really need it. The downside is that the drug is quickly metabolized. So you have two, maybe three hours of good solid pain relief before the effectiveness starts to fray. This is a point of concern because the rules are ironclad: You get a shot once every four hours and not a second sooner. The last half hour is torturous. Every minute or three you turn, painfully, to check the clock, exasperated at its glacial progress. After an impossibly long wait, the door finally swings open and your nurse enters, bearing an ampoule of salvation, and in an instant you forget everything.
After three days I was released. The ride home was agony; every little bump, and there were hundreds, felt like a right hook to the gut. The next several days were a steady downward spiral. The gas they used to inflate my abdomen for surgery could not find an outlet. Seeking gravitational equilibrium, the bubble reoriented itself with every motion, nudging organs this way and that. No position was comfortable, and sleep proved elusive. Soon the vomiting began, forceful, empty-your-guts, projectile vomiting. I stopped eating and drinking because it became pointless. Anything more than a sip, just enough to carry a dose of dilaudid, would bounce right back.
Multiple, increasingly frantic calls to the Doctor, two or three a day, produced little action and mostly useless advice, delivered in a diffident tone. Drink Pedialyte; apply a hot water bottle; take some antacid; try to walk it off. Soon the calls were mostly going to voicemail. The final conversation, a week after surgery, felt like a dismissal: If you do not experience improvement “soon,” go to the ER. No timeline, no offer to coordinate, nothing.
On the ninth day after surgery I collapsed while walking to the next room, fifteen feet away. It was time.
It was almost too late. The admitting nurse took one look at me and called for a bed. They went immediately to work. Bloodwork revealed a white count of nearly 30,000, waaaayyy into the red. I remember the shocked expression of the attending doctor as he reported this. My kidneys were already starting to shut down, with other organs soon to follow. A CT scan showed fluid filling the abdomen. Classic signs of sepsis. It was clear that the sutures had come apart, allowing bowel contents to flow into my abdominal cavity. This is a Very Bad Thing. Immediate, emergency surgery was needed or I would die within hours.
It was the Easter weekend and staffing was bare-bones. The on-call surgeon was summoned. She managed to piece together a surgical team, and in less than an hour they wheeled me into an operating room. Standing around were seven or eight assistants, all wearing serious expressions. I made a lame joke: “I suppose you’re wondering why I’ve asked you all here today,” and nobody laughed. I thought: I might not wake up.
But I did. I awoke to a changed world. There was a 10-inch incision running from my sternum down to the groin area, unseen beneath a couple square feet of dressing, pierced by a half-inch transparent hose connected to a pump. Reddish fluid could be seen flowing through the tube. I bristled with tubes and wires. Off to one side was a hole in my abdomen with a piece of intestine protruding from it. A battery of whirring, beeping machines surrounded me, monitoring vital functions. For the first time since infancy I was absolutely helpless. There was nothing to do but accept it and let the time pass.
The first few days were touch and go. The infection caused extraordinarily vivid, quite imaginative hallucinations. “Way to go, brain,” I thought. Even the slightest movement triggered spasms of pain beyond the reach of even dilaudid.
But I was ridiculously lucky. As recently as twenty five years ago, advanced abdominal sepsis was a death sentence. But even today, with greatly improved medicines and techniques, close to half don’t survive it. Those who do are typically in hospital for months, and are never again quite the same. Thanks to good genes, hence good health, I was able to leave the hospital in just thirteen days.
There followed many months of slow recovery and yet another procedure and hospital stay, this time to drain a fist-sized, life-threatening abscess on the abdominal wall, next to the sacrum. When I insisted on pursuing re-connection surgery, Dr. Fox, the surgeon who saved my life, begged off. “Contact the Cleveland Clinic or the Mayo,” she said.
I chose the latter, primarily because of its stellar reputation. A secondary consideration was the Clinic’s relative ease of access from Austin: Head north on I35 about a thousand miles. Hang a right just over the Minnesota line. Another fifty and you’re there. Practically a day trip.
I contacted the Mayo through their online appointment-request portal. Under “Comments” I gave a four-paragraph, detailed summary of what had happened to date. To my amazement someone from the Clinic called almost immediately: Would you mind answering some follow up questions? A day or two later, another phone call: Could you please send us your records, including imagery? A package was shortly dispatched. Three or four days after tracking confirmed they had received it, yet another call: When can you come for a consultation?
That consultation, at the main campus in Rochester, Minnesota in August of 2023, revealed widespread, serious damage that would require major, life-altering surgery to repair. Sepsis and sixteen months of stubbornly recurrent infection had dissolved pounds of muscle, fat and sinew, and left a wasteland of scar tissue. Any hope of restoration to normal was dashed.
Corrective surgery, which required three teams of specialists working for more than six hours, was performed in January of ’24. The recovery from that is not yet complete, and may take another year or three.
But I’m alive, and mostly functional. With any luck this will be the last chapter of my Health Care Adventure. Not holding my breath, though.