The Fat Man of Cancer: One Man’s Search for NED

Editor’s Note: You can read the published version of The Fat Man of Cancer in Arkansas Life magazine.

If you’re going to be killed, it may as well be by your doctor.

In the beginning it did not occur to me to question my doctors. When I first limped into the emergency room precious little entered my mind at all save the paranoid fear that my wife had slipped carburetor fluid into my cereal. My insides were writhing. I was a little unhinged. My scalp wet with sweat. I did not dismiss the idea that a vicious little man, preternaturally tiny at birth, had crept into my small intestines and was attempting to wrench the juice out of my appendix for some kind of exotic cocktail.

With a CT scan in hand, the emergency room physician assured me that there was neither man nor beast gorging on my internal organs. It was something else. It was me. It was rebellious cells of my own making gone mad with ambition, attempting to create entirely new organs of unknown evolutionary purpose.

“You have a tumor in your kidney,” he said. “About the size of my fist.”

He held up his fist.

He was a large man.

“The kidney needs to come out immediately.”

The rainbow of pain meds did soothe the holocaust in my abdomen but did little to ease my paranoia. What kind of sick bastard says such things to a guy when he’s already down? Was he harvesting organs for the Chinese black market? Could I trust a man in a white coat and receding hairline? The sweat on my forehead began to bubble.

And another thing – did this guy just tell me I had cancer?

DIAGNOSED – AND CURED

Yes, it was cancer. A rare cancer known as Renal Cell Carcinoma, I would learn.

And the kidney came out. Immediately. It was sent to a lab and probed by a pathologist and never seen again. It is probably rotting in some nuclear dump in Arizona. Or sold to some unsuspecting sucker in China. In any case, I was free of it. And free of cancer, I was told.

“You are cured,” my urologist told me after he had completed a scary sounding surgery called a radical nephrectomy. Radical times, however, call for radical measures, and we had succeeded. Visibly proud of his handiwork, he provided color commentary on how he had sliced two small opening on the right side of my torso and inserted an incomprehensible array of long-necked tools through them, along with a bottle-necked camera, and performed the entire procedure by watching a video monitor as if he were catching the news on CNN.

“It’s called video-assisted laparoscopy,” he told me, and then with the slightest frown added, “Hand assisted.”  Evidently this was like playing from the white tees on a professional golf course. “Your kidney was difficult to access, I had to move some other organs out of the way.” So he had cut about a four-inch incision near my belly button, into which he inserted his hand to shuffle around like a woman searching for car keys in her purse.

His surgical grace and acrobatics were lost on me, however. All I heard was: You’re cured.

Go back to living your life, he told me. Almost as an afterthought, he suggested I return in six months and do an x-ray. I registered, somewhere in the spideriest corner of my compartmentalized mind, a red flag. If I was cured, why come back for x-rays?

So I did the very thing that doctors universally urge us not to do. I went online. I read everything I could find about my new nemesis. There are some good reasons doctors urge the rest of us to avoid medigoogling. There’s a lot of misinformation online, with some pretty whacked-out suggestions for alternative remedies. For example, ingesting mega volumes of bird guano may not be as reliable a cure for migraines as you might think. And in the realm of cancer, there are a lot of terrifying statistics.

I discovered that there was roughly a fifty-fifty chance of recurrence. I learned that if the cancer returned, if it metastasized and splintered, if the napoleanesque little bastards resumed their grim march in search of new organs to conquer, the survival rate of somebody in my condition was bleak indeed.

This seemed jarringly at odds with you’re cured.

I called my wife, Dena, at her office and informed her of my findings and she went quiet and then she went incoherent and then she went temporarily insane. We don’t speak about it. Its legend has grown, become apocryphal. There are whispers of her tearing wall sockets from floorboards, emasculating male colleagues with a rusted paper weight. Windows smashed, supervisors fleeing into the streets.

Whatever happened that day, she came home early with a newly acquired prescription for Xanax. And then she went to work. A policy wonk by profession, Dena descended into a crazed binge of research, an addict in the throes of overdose, sleepless and eye-weary. When she resurfaced she did so with a shiny new degree in oncology from Google U.

“We need a new doctor,” she said. I was startled by the authority with which she made this mutinous assertion. I was hesitant to question a man who had, probably, gotten his degree from a real university. “He’s a urologist,” she said. “He knows just enough about kidney cancer to make him dangerous.”

Nobody, nobody, thinks it’s a good idea to wait six months to perform an x-ray, she told me. Except my urologist, I noted. Yes, except for him, she admitted, but he doesn’t know kidney cancer. Not like I do. X-rays won’t even pick up a metastasis under a centimeter in the lungs.

I was not about to cross my wife. I still harbored suspicions about her affinity for carburetor fluid. So, we went to see another doctor – this time a urologist specializing in urological cancers.  While acknowledging that a recurrence was possible, he suggested x-rays every six months would be adequate.

Dena immediately tossed him into the ashheap of discarded urologists.

She had a theory: Although kidney cancer is a rare form of cancer, it us just common enough that any urologist thinks he knows enough to treat it. You get something like Mesenchymal chondrosarcoma and a specialist is brought in immediately. Kidney cancer? A little surgery and you’re good to go.

“Six months and an x-ray won’t do,” Dena said. “We need CT scans every three or four months. No more urologists. We need an oncologist, a real one.”

Six months and an x-ray won’t do, our new oncologist told us. He recommended a regimen of CT scans every three months.

Right before me, Dena’s brain grew a pound. How could she have known this? It was about this time that I began to seriously consider the possibility that she might be a witch.

Our oncologist was surprised when we told him that I was supposed to have been cured. “There’s no such thing as a cure,” he said. Even five years ago there was little that could be done for somebody with kidney cancer. “My job was to help you die,” he said. This casual statement, almost an aside, a 180 from you’re cured, stunned my brain physically. It was as if he had beat me about the head with his reflex hammer. My eyelids were drooling. He looked up from his charts. “There’s an array of new drugs developed and approved in the last several years, though. We have options.”

While there might be no cure – he used air quotes to emphasize this point – we could strive for NED. NED is not some crazy overweight uncle from Ohio but the condition of showing no evidence of disease. It’s like purgatory for cancer survivors – not cured but not dying but somewhere in-between.

REDIAGNOSED – AND NOT CURED

Just three months later Dena and I sat waiting to see the results of my CT scan. The oncologist’s assistant entered the room. At least he claimed to be the oncologist’s assistant. Balding guy. White coat. Clipboard. He fit the profile.

He sat on one of those little swiveling stools that look as if they belong in an elementary school. “So,” he asked. “Have you had a cough lately? Any shortness of breath?”

“No.”

“Huh. Well, you’ve got spots in your lungs.”

“Spots?”

“Mets. Metastasis.”

When cancer spills into the bloodstream and begins snorkeling through your veins, you are immediately vaulted to what is known as Stage IV cancer. Another term of endearment is metastatic cancer. Both phrases are politically correct – and medically correct – alternatives to the dreaded phrase terminal cancer. In my mind, though, this man had just given me a potential death sentence as casually as if he were telling me I had a fever.

There was a long and awkward silence which he did little to fill. For some reason, all I could think about was how prescient Dena had been about needing CT scans every three months.  This settled it; she was definitely a witch.

When the silence grew unbearable my witch asked, “What do we do next.”

“We need to get you set up on chemotherapy,” the balding man with a white coat and a clipboard said. (I am no longer certain he was an oncologist’s assistant.)

Dena nearly stabbed him in the eye socket with her car keys. “No,” she said abruptly. “I don’t think so. Chemotherapy doesn’t work on kidney cancer.”

Another awkward pause.

“I’m sure all of this is a shock,” said the white-coated man. His was the kind of slow, parched voice you hear during an encounter a Rottweiler. He probably didn’t believe in witches, and yet here one inexplicably sat in his examining room, challenging him, clearly not afraid to gouge out his eyes.  “Why don’t I give you two a few minutes to digest this news.”

“We don’t need a minute,” said Dena. “We need our doctor. Get him, please. Now.”

Our oncologist entered somewhat warily and acknowledged that chemo was not the right course of treatment. My situation was inoperable, he said, and he wanted to start on the drug Sutent right away. Sutent is the wonder drug of kidney cancer, one of the recent advances approved for the market in the last five years or so. It can potentially “extend life” for years, but it can’t usually offer up the holy fat man named NED.  There is only one treatment that can – one that our oncologist seemed oblivious to. This treatment – High Dose Interleukin 2 (IL-2 in hospital lingo) – is NED made manifest. And taking Sutent would undermine or block outright our ability to undergo this treatment.

Thank god for my witch. I would have simply said, Okay, you’re the doctor. Dena doesn’t say such things. At home, this is annoying; at the doctor’s office it is a godsend. She said she wanted to wait on the Sutent and try IL-2 first.

More silence.

Our oncologist seemed stumped, and I wondered if he could feel a sizzling burn on his forehead where Dena’s Wicca eyes were cutting a hole through his skull.

“Well, that is very hard on the body, very hard,” he said finally. “And few patients have success with it.”

Low chance of success or not, we knew that I was a textbook candidate. Not everybody is. It is indeed a difficult treatment that can result in severe side effects – uh, like death.  Reading the warnings on the website of the drug, named Proleukin on the market, was like reading off a chart in a medical examiner’s lab:

PROLEUKIN^® administration has been associated with capillary leak syndrome (CLS) which is characterized by a loss of vascular tone, and extravasation of plasma proteins and fluid into the extravascular space. CLS results in hypotension and reduced organ perfusion which may be severe and can result in death.

Some people get a rush from rock climbing or skydiving. I get one from reduced organ perfusion and extravasation of plasma proteins. Besides, our desire was not to “extend life” for a couple of years but to sweep the cancer from my body. I wanted NED, man. And only Proleukin could deliver him to my door.

And so we found ourselves on the hunt for another doctor. Again.

This time we would not settle for one who happened to be in the area. We would find a renal cancer specialist no matter what it took. Our search was like deciding on a college. We called hospitals and interviewed doctors – including an old elementary school friend, Amy Abernethy, who was now a prominent oncologist at Duke’s Comprehensive Cancer Center; she would become my closest advisor. We spoke to other kidney cancer patients, mapped out roadtrips and tallied travel costs.  Coming to grips with the myriad insurance rules was a bureaucratic Rubik’s Cube.

In the end, we selected Duke.  It was south instead of north, which as a lifelong Southerner seemed comforting and unfreezing. And Amy pointed us to Dr. Dan George, a renal specialist on the cutting edge of kidney cancer research. He knew about IL-2, he knew about Sutent, and he knew about a wide array of other experimental treatments we’d never heard mentioned.

THE SEARCH FOR NED

I’ve now completed three rounds of IL-2 and it has indeed had its tribulations. I have hallucinated snowy owls in my hospital room. My feet have ballooned into clown’s shoes, swollen and discolored from edema. I have barfed into little pink trays. My skin has burned red and peeled, like a college idiot drunk and asleep under a smoldering sun on the beach. I have collapsed and been forced to wear “Fall Risk” accessories in the cancer ward like Scarlet Letters. I have had weird rashes and unbearable itchiness. Pains in my joints severe enough to wonder if I had been kneecapped in my sleep. Near kidney failure. But under the guidance of Duke’s IL-2 expert, Michael Morse, strict protocols carried out under intensive-care conditions ensured that none of the chilling potentialities listed on the Proleukin site would become reality.

The treatment did not eliminate the cancer from my body, but it killed off many of the smaller mets shotgunned in both lungs and stopped the larger ones in their tracks. IL-2 has opened the way for lung surgery, an option I was previously told was impossible. If we had stuck with our first two doctors, I might not even know of the metastasis to this day. Had I stuck with the third, I may have been denied the option of IL-2 and surgery.

In short, had I listened to my doctors instead of my witch, I might no longer be around to let doctors keep injecting me with toxins and carving me up with crafty knives.  Which might not be fun but is better than dead.

I wish that my story was an exception to the rule, but I know better.  This isn’t to say that most doctors are incompetent. They’re not. Despite the billions spent on cancer research, we still know relatively little about this disease.

It is to say, though, that every patient should get a second opinion. Even, a fourth. And if you’re going in for more than the flu, go in armed with knowledge. You must be your own advocate. It is a bumper sticker in the making: Advocate or Die.

Having finally found the right doctors and nurses, though, I am confident that medical science and spousal sorcery will bring NED to my door.  And when he comes knocking, I plan to let that crazy sonofabitch in, offer him a bourbon and entice him to stay a long, long time.

More from Essays on Living with Cancer

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  The Garden Cemetery

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  My Illness — from My Daughter’s Eyes

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  Waiting on Cancer