ONE PAGE AT A TIME: Life, Outlook, Lessons from Living with Stage Four

By Andrew Gross

My friend and former co-writer, Andy Gross, is seriously ill and living life one page at a time. Read a chapter of his painfully honest, true story. He is a hell of a writer.

Always has been.

Jim

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Eleven years ago, I wrote a novel entitled 15 Seconds, about a man whose happy life is turned upside down in the blink of an eye.

Last year, that’s what happened to me.

After nineteen published novels and several NYT bestsellers, I had made the decision to “hang up the spikes” and call it a career. Though I still carried a decent readership, I watched as my sales graph began to trend downward, my earnings dipped, and I felt myself slowly sliding into a state of authorship I had always promised I would never allow myself to reach: irrelevancy. I turned down an offer most writers would’ve jumped at, took a year’s break, which quickly stretched into two, then three, and suddenly, I found myself defining myself more as a doting grandparent than as an author. I was done-- and I was actually okay with it: traveling, staying active, my mind wonderfully free, and most important, healthy.

Until I wasn’t.

First, a routine prostrate surgery didn’t heal as it should have. I found myself going every thirty minutes at night, and sometimes with blood. Not getting any sleep. My urologist kept saying, “Just give it time. Your bladder was pretty beaten up. It’ll get there.” But it didn’t get there. Months passed. The matter continued. My internist finally said, let me take a look. He ordered an ultrasound on my abdomen. Afterwards, in his office, he looked at me, kind of serious. “So let me ask you, Andy, how much do you drink?”

“Drink?” That took me by surprise. “I don’t know. One vodka, maybe two some nights. Why?”

“You seem to have a build-up of fluids in your abdomen. You might have something called ascites.”

“Ascites.” I’d never heard of them. “Is that bad?”

“It may be nothing,” he said, perusing the film. “Or something. Let me take some bloods.”

That very night, after dinner, he called me back. “How are my ascites?” I asked.

“Never mind them. You need to see your urologist,” he said. “Your creatinine level is exceedingly high.” Creatinine is an enzyme that gives an indication of kidney function. Until that moment, I hadn’t heard of that either.

“I’ll get on it,” I said. “I’m actually supposed to see him in a couple of days anyway and...”

“Not in a couple of days,” my doctor cut me off. “Tomorrow.”

A day later, I was in my urologist’s office. “Enough is enough,” he said. “We’re gonna get to the bottom of this.” He inserted a catheter in me and took a look around, not exactly my favorite thing in the world. In fact, my least. “Nothing.” He shrugged. “But as long as I was in there, I took a biopsy. Just as a precaution.”

“A precaution,” I said, maybe with a hint of nerves. “Nothing to get too worried about,” he assured me.

Three days later he got back to me. The news was not good. “You have bladder cancer,” he said bluntly.

I felt the air rush out of me. “Oh, boy.”

“And I’m afraid it gets worse. You’ve got a rare variant called plasmacytoid. I’ve never even seen it before, which is why I missed it. It’s rare and very aggressive. You have to see someone fast.”

“Someone…” I said, frightened at the next word I knew would come out of his mouth.

“An oncologist.”

That was how it all began. How my life turned upside down. My fifteen seconds. In a day I went from a guy who begrudgingly saw a doctor twice a year (alright, I did have a heart bypass in 2019 and four stents before that) to someone whose life forever on would be defined by medical necessity.

Events took over quickly, so much so I never had a moment to dwell on the severity of things. That same week, I saw specialists at the University of Miami and Memorial Regional Hospital in Hollywood, Florida. Both determined that before my hyper-aggressive cancer could even be addressed, my kidney function had to be restored. And that, apparently, was no certainty. On my seventy-second birthday, I underwent emergency surgery to insert two long stents into my obstructed ureters that led from my kidneys to my bladder. The operation was a success at first, and stents were far easier to deal with than a double nephrostomy—which required tubes inserted into my kidneys through my back. But in only ten days, those stents would fail, and it was only much later that I learned why: because the plasmacytoid growing inside me had completely covered them over.

In only ten days!

Just as troubling, the oncologists in Florida shared even more sobering news. Plasmacymoid bladder cancer was so rare— one in a thousand, they said— they really had no experience treating it. You won the lottery, they joked grimly. Just not the one you were hoping to win. In fact, the doctors there initially proposed removing my bladder, since in their view, the cancer was fully contained. I later learned that if they had, I’d likely be dead now. Plasmacytoid cancer cells would have spilled all over my insides during the procedure and would have quickly metastasized everywhere. Rookie mistake, my future oncologists would call it. ”Get yourself up North, maybe to Sloan Kettering,” the Florida team exhorted me. I knew of MSK, of course, one of two pre-eminent cancer treatment centers in the country. But I didn’t have a single contact there nor an inkling of how to become a patient. And I needed to do it fast. For the rest of my life, I will remember my Florida oncologist’s forlorn expression as he said this to me. “I’m sorry.” He just shook his head with resignation. “I wish I could do more.” His look was as if he was staring at a person who he knew was soon to die.

But before I was discharged, the doctors in Florida told me a PETscan had revealed at least one bit of good news. My cancer was indeed contained to the bladder; it had not spread. I was voiding my bowels multiple times a day and my kidney function was no sure thing, but at least that was something I could cling to. I was still Stage One. One of my sons searched online and came upon a doctor at Sloan Kettering (MSK) who seemed to have extensive experience with the plasmacytoid variant. Fortuitously, after furiously contacting anyone we could think of who might be of help, we found two people who had friends or relatives who had actually been treated by this very doctor (let’s call him Dr. G.) for more conventional bladder cancers. As people do who become part of the cancer community, they quickly lobbied for me, and, miraculously, Dr. G. agreed to see me, likely because my plasmacytoid variant was so rare I’d be an interesting medical challenge. My wife and I flew up to NY—semi-privately, as I could never have made it through an airport— and when I went in to see him the following day, I was so sick I could barely make it to his office from the waiting room without voiding myself. “You’re in no condition to go home,” he said after a short exam. “We’re admitting you. Now.” One thing they agreed on with Florida was that before they could even treat the cancer— the thing that held my life in its grip-- they had to deal with my ailing kidneys, and now, another failing organ, whose deteriorating condition could kill me even sooner.

Because the first thing I learned at Sloan was that the one positive thing I had come away with from Florida was wrong. My cancer had indeed spread. It was all over my rectum.

Congratulations, Andy. Welcome to Stage Four.

I remained in the SMK hospital for nine days. My first day, the doctors performed a double nephrostomy on me, meaning they put a hole on each side of my back and ran a tube into each kidney, diverting the flow of urine into two plastic bags. (I still have them). The doctors had no idea if my kidneys would hold or fail. They also had to address that my rectum was now completely non-functioning, overrun with cancer. So, on the following day, they gave me a colostomy. Now I voided into a pouch as well. (I likely will for the rest of my life.) Every morning on rounds, the doctors grimly went over my condition. They were neither positive nor particularly sanguine about a recovery. I was a sick guy, they said. My kids flew in from Florida and California. They were told I had metastatic cancer and didn’t know how long I would survive. Even though all three are adults with families of their own, how brave and strong they all stood, supporting me, advocating for me, pushing me on when they didn’t know if I would live or die.

But my kidneys held. Over the nine days, my creatinine level dropped from 2.8 to 1.4— back into the normal range--a huge win. It was a happy, wonderful morning when they decided-- tubes running from my kidneys, pouches collecting my feces from a hole exposing my large intestine, to allow me to leave. Even the doctors cheered a bit. I’d lost 30 pounds. I looked like a shadow of myself. I was weak, kind of helpless. My back ached from the hospital bed. I couldn’t clean myself, change my tubes or pouches, or even medicate myself. And I was a little scared at the real battle that lay ahead. But even in this diminished state, I was alive. I had my family, my sense of humor, my belief in myself, and I never, ever for a second thought I wouldn’t find a way to beat this thing, no matter how formidable the odds. I grew familiar with an expression I have used many times as my situation has fluctuated over the months. Any cancer patient understands it:

It damn well beats the alternative.

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Andrew recounts his challenging medical battle with an aggressive form of Stage Four cancer with lessons he’s learned on adversity, mortality and dealing with uncertainty that has influenced his treatment and brought him to writing again. He can be reached on Facebook and at AGpositivity@gmail.com.