I thought I was in the midst of a dream. Although I couldn’t see it, I could sense this monster hovering near my feet, massaging my legs, from my ankles to my knees; each squeeze from its spongy hands pulling me back to consciousness. Why won’t it stop? I thought.
I was lying on my back, and although I was not tied down, I found that I could not move. Something was on my face, too. But caught somewhere between the hazy dreamworld of semi-consciousness and being awake, I could not make sense of anything. I tried to ask for help, and although my mouth was open, I could not utter a word. I closed my eyes again, feeling the monster working my legs, the only discernible noise a whoosh-shush, whoosh-shush as I drifted off to sleep again.
After what seemed to be an eternity, the haze lifted and I could see the tubes coming from my mouth and nose. What I thought was a monster was in fact a pneumatic contraption designed to keep the blood circulating in my legs. The room was fairly large but spare, with only my bed, electrocardiogram leads connected to a cardiopulmonary monitor above my head, and an IV tower holding bags of saline solution. There was a single wooden chair at the foot of the bed, empty. I was in a post-operative recovery room at St. Elizabeth Edgewood in Northern Kentucky. Slowly, a palpable sense of relief washed over me. I remember thinking: Hey, I’m alive, after all.
I had awakened, mostly intact, in Cancerland.
Just days before, I had been bouncing around in the back of a pickup truck, maneuvering up a glorified goat trail to the village of Las Mesas in the tiny Central American country of El Salvador, joined by staff and board members of Christians for Peace in El Salvador (CRISPAZ), the nonprofit agency that I had served as executive director for the last year. I’d traded in a 25-year career as a journalist and religion writer to head up an organization founded during the civil war in El Salvador a quarter-century ago with the hope of doing some good in a country that had historically suffered as a result of United States foreign policy during the tumultuous 1980s. Part of the job required me to travel several times a year to Central America to keep an eye on the operations there, where our most important work was bringing students and church groups from the U.S. to El Salvador for short-term mission trips.
As we worked our way up the hillside to Las Mesas, I began to experience deep abdominal pains that, at first, I attributed to either the plethora of red and black beans I’d been having for breakfast, lunch, and dinner during the weeklong board meeting we were conducting in the capital city of San Salvador, or the constant jabbing I was getting as the truck lurched from stone to stone on the nearly washed out road. But a day passed, then another, and finally one of the members of the CRISPAZ board convinced me that, with the meetings over, I really ought to return to the states and see a doctor.
I half-entertained the idea of going to a hospital in El Salvador until I learned that the preferred destination for Central Americans seeking serious healthcare is Houston and parts north. I booked an early departure on Continental in the only space available—a first class seat alongside members of the Houston Dynamo Major League Soccer team, which had just played an exhibition match against the El Salvador national squad. I tried to smile and carry on brief conversations with the soccer players even while I was bent over in pain, unable to enjoy a glass of champagne or the gourmet meal prepared for those of us in the front of the 737. So much for the glories of flying first class.
The severe pain I’d begun to experience in El Salvador was due to a fist-sized tumor that had lodged in my lower intestine, ultimately blocking any waste or gas from moving through my GI system. The tumor had blocked my descending bowel and caused a monumental plumbing backup. Dr. Mike Davenport, the general surgeon on duty when I was admitted for the emergency procedure, put it to me this way: my descending bowel had acted like a garden hose, forcing liquid and solids through the small space with enough pressure that my cecum—the first part of the colon, which connects to the small intestine—burst, causing the peritoneal cavity around my stomach to fill up with the contents of my colon. I equated it to the levies and retaining walls in New Orleans giving way to the high waters from Hurricane Katrina: Lots of foul stuff floating around where it shouldn’t be. Davenport told me that he went through 20 liters of saline solution to clean out the peritoneal cavity of the waste products.
“It was a mess. A mess,” he said. He wasn’t smiling when he gave me that report.
As an added bonus, I was given a colostomy along my descending colon, with the opening for a colostomy bag placed on the left side of my lower abdomen. A couple of matronly nurses visited me in the hospital a few days after surgery to give me training in the care and operation of the colostomy bag, but I can tell you there is no rosy way to deal with the fact that you carry your own feces around in an opaque bag just above your belt line. Everything was held in place with an elastic belt and something like plumber’s putty, and no matter how hard you try, once in a while the whole shooting match is going to fail and you have poop dripping down your belly. My colostomy apparatus was also a noisy thing: When gas accidentally passed, it came out in a kind of squealing, almost lifelike pitch. I began to call it Kuato, after the deformed character growing out of the stomach of a terrorist in the Arnold Schwarzenegger Mars movie Total Recall. My kids, nieces, and nephews loved the concept of Kuato. They didn’t, however, like it when I popped the seal on the bag to let a little gas loose for comfort (and some mischievous fun).
I suppose the natural thing to do when you have just had major cancer surgery is to worry. But, strangely, I was not having any of that. Not enough time, really. Within a day or two of regaining consciousness, still lying in my hospital bed, I was processing payroll for CRISPAZ, fielding calls on my cell phone, and talking to board members about how I was doing, when I planned to be back to work and so on. Worries about the nonprofit were really a blessing in disguise, since I spent a lot more time concentrating on making payroll and other deadlines than I did on my own condition.
Early on I was comparing notes with a friend in Chicago, a stockbroker who had been diagnosed with kidney cancer a couple of years earlier. One thing he told me I found particularly calming. “If you gotta get cancer,” he said, “colon cancer is the best kind to get. It has better cure rates.”
Friends and family let me know they were thinking of and praying for me, and a group of folks from Cincinnati who had made a visit to El Salvador joined hands and prayed for me at the tomb of Archbishop Oscar Romero, the Roman Catholic prelate who was murdered at the beginning of the Salvadoran civil war in 1980. Some have scoffed when I tell them this, but I truly believe that I’m here today because of modern medicine and the saintly intercession of Oscar Romero.
Somewhere in all this I started reading the essays of Christopher Hitchens, the English journalist and writer based in Washington, D.C., whose polarizing works, such as God Is Not Great, have served to energize a legion of haters who publicly cheer against him now in his battle against cancer of the esophagus. I’ve read several of his books, most recently his atheistic tome, and it has made me wonder how someone can deal with all of the black nights of the soul associated with cancer and not have at least some hope for a divine destination on the horizon. I feel a little sorry for Hitchens, although he warns in his most recent columns in Vanity Fair that he doesn’t really need the pity nor the prayers. Still, I think you have to have faith along with that hope. And most important, you have to have the support of your family, who remain at the center of your struggle. Throughout my own journey through Cancerland, I have been bolstered by the courage and support of my wife and two children, who have stayed constantly positive about me and for me.
My first real foray into the deepest jungles of Cancerland, where I seriously began to face the unknown and the difficulties that loomed ahead, occurred soon after my initial visit with my oncologist. I was still pretty much flat on my back and recovering from an incision that ran from below my navel to my breastbone. Davenport, the surgeon, had worked regularly with a young doctor named Doug Flora, a 39-year-old physician with a wonderful bedside manner and an air of assurance; if anything can be done, he’s going to get it done for you.
Flora—dark-haired, slender, always smiling—is part of a large cancer practice called Oncology Hematology Care, with doctors and operations on both sides of the Ohio River. I liked him immediately. He reminded me (often) that he is from the new generation of oncologists, not one of the “old guys.” I guess it was a way for him to let me know that I can have experience, sure, but if I’m looking for the guy who is at the front of the pack digging up the latest research and trial findings, he’s my guy.
Well, he definitely is my guy. In fact, I feel very lucky in my choices for doctors. It was simple chance that led me to Mike Davenport, and thus to Flora. But like it or not, this is very much how we find our cancer specialists in Cincinnati—or anywhere else in the country, for that matter. Your family doctor will recommend someone they know, whom they believe has a great reputation for working on the type of disease you suffer. And you try to go with the flow and hope you are getting the best care you can get, which is usually the case. But sometimes those referrals don’t work: My friend from Chicago, an Ohio State graduate, told me that his first cancer doc was a graduate of Michigan, and try as he might to like the guy, he ultimately changed doctors because of the ancient rivalry of the two football programs. (I know, it didn’t make any sense to me either. But who am I to judge?)
My diagnosis was pretty good at this point: Although I had been told I had Stage III colon cancer—because the cancer had spread from the tumor to my lymph system—the entire tumor appeared to have been removed, and a follow-up with chemotherapy would push any reappearance of the cancer off for many years. Flora told me that data on colon cancer over the years had shown that surgery not followed by chemo resulted in a higher chance of tumors coming back.
It was an easy call for me. The plan was that I would let my body recuperate from surgery for about six weeks, and then I would launch into the chemo routine that Flora would design for me: Nine treatments of a lethal cocktail that would zap my body of existing cancerous cells. The regimen, called FOLFOX, consisted of two cancer drugs: 5-FU (fluorouracil), a drug that has been used in cancer treatment for more than a quarter century, and oxaliplatin. I was given the oxaliplatin intravenously, but I took the 5-FU in tablet form in a drug called Xeloda, so that I would be able to travel more easily and meet the requirements of going to El Salvador several times a year. I didn’t lose any hair—at least not with this regimen—but the oxaliplatin made me hypersensitive to the cold and brought on a numbness in my fingers and toes that took a long time to pass.
There were, of course, adjustments that had to be made. I became so ill at one point that the mere sight of the pills made it hard to eat without getting sick. I lost a bunch of weight—going from 230 pounds when I was first diagnosed to 195 pounds after surgery and now down to 180 in the wake of the chemo—and I was completely lethargic.
This down cycle lasted for about a month. But a few days after the doctors lowered my dosage of Xeloda, I was lying on the couch and smelled a pot of chicken soup my wife was making. I went to the kitchen and had a bowl of the soup. And then another. Then I drained the pot. I ate and ate everything in the house for what seemed like a week, and finally, sated, sat up and decided that I was finally feeling pretty good. When that particular chemo regimen finally ended, I was very much ready to leave Cancerland behind and flip the switch on my life back to “normal”—as much as that was possible. Easier said than done.
In March 2009, nearly six months after surgery and almost immediately following the end of my first round of chemo, I packed my bags and headed south to El Salvador for a series of meetings. By then I had a routine down pat about how to change the colostomy bags (every two days), and the connector ring that was glued to my stomach (once a week). But because I was going to be very far away and I didn’t want to chance not having all the right stuff for my trip, I brought along a bag a day, two boxes of rubber gloves (I’ll leave that reasoning to your imagination), and enough “O” rings to hang a long shower curtain. The only fun I had with the colostomy bag was in the Houston airport, where a security guard opened my suitcase and asked what all the stuff was I was bringing along. Rather than explain, I simply pulled up my shirt and showed him my bag. Almost as if on command, the elastic belt that was holding the whole affair in place snapped off in his direction. “Go ahead,” he said, leaning ever so gently back and away from me and my colostomy gear.
Because El Salvador is such a religious country, it was no surprise that my staff there was concerned about my well-being and told me about the various prayers offered for me. I decided I needed to go to the source of the divine intervention that I believe had a part in saving my life: the tomb of Oscar Romero. Located in the undercroft of the Metropolitan Cathedral in San Salvador, Romero’s tomb is a bronzed tableau with his effigy holding the bishop’s staff, a pointed miter crowning his head, and a bright red ball resting where his heart would be. I marveled at the peasants who wandered into the crypt, an upstairs/downstairs world where the poor were relegated to the basement while the rich churchgoers worship in the main level of the cathedral. Each person seemed to have his or her own ritual but they all stopped for a moment to whisper in the ear of Romero’s bronze figure.
Eventually, I, too, walked around his effigy and whispered a hello in his ear: “Thanks. I’m still here, still working for the people of El Salvador. So keep me on your radar.” It’s become my ritual, something I do every time I go back.
Perhaps the most important thing I’ve gained over my 26 months in Cancerland is a better understanding of the disease. From the beginning, this has been Doug Flora’s mantra: Each treatment, each test is going to tell us how the cancer reacts to chemo, whether there is going to be metastasis, and what kinds of odds I will have going forward. Part of that process of understanding—for me at least—involved getting a second opinion about my treatment. Flora listed his recommendations: Sloan Kettering in New York; the Cleveland Clinic; MD Anderson in Houston; University of Pittsburgh Cancer Institute; and the Mayo Clinic in Rochester, Minnesota.
I opted for a visit down the road at the University of Kentucky’s Markey Cancer Center, where I received the unwelcome news that the original scans done in October 2008 actually showed hints of a spot on my liver. A CT scan in February 2009 showed nothing; but after another test, there indeed was a spot—a tumor that had been there from the beginning but had not been detected by the surgeon nor immediately identified by the radiologists. I remember exhaling, and then recalling that I rushed into the hospital as an emergency patient, and that in the clamor to get me up and running, things like this could be missed. Plus, we did find the spot in time to treat it, and that was good news. So we were on to Plan B.
The greatest strength your doctors can have, outside their own expertise, is their ability to place you with the best specialists for what ails you, and here Flora did his job once again. I was sent to see Dr. Steven Rudich, head of liver transplant surgery at the University of Cincinnati Medical Center. Drs. Rudich and Flora had been engaged in patient referrals for a number of years, a fact that the quick-talking, fast-moving Rudich confirmed to my wife and me during our first consultation. The good news, as they both told me, was that this cancer is a curable thing if gotten in time (curable equating to long-term survival in this context). But that might mean actually cutting off the cancerous part of my liver, along with some additional tissue for safety’s sake. The spot in question was on the left lobe of my liver, which is the operable portion of the organ. And the best news, I guess, is that the liver can actually grow back.
And so I was running the radiological gauntlet, getting PET scans and CT scans and an MRI. Plan B was going to involve two surgeons: Dr. Brad Davis, a colon and rectal surgeon and associate professor of surgery at the University of Cincinnati College of Medicine, would take down my colostomy and reconnect all my pipes, while Rudich would go in and poke around to see if he could cut away the spot in question.
None of the planning or scanning or additional surgeries would be available to me if not for the top-notch insurance plan I have through my wife’s work. When I first got sick, we were able to opt into the higher-priced coverage component of the plan, which has allowed me full access to the state-of-the-art treatments that are available. My most recent round of chemo was something of an experimental application of known effective drugs. (In fact, I’m told there is a study under way of the exact regimen I was using, so it is possible my results will be added to that study.) Thus far, our insurance company has not denied us any reasonable requests.
Which brings me to Peggy Hollingsworth. Peggy is a nurse advocate for me. She has been assigned by the insurance company to follow my case and make sure I am getting the treatment I should be getting, and to motivate me to help my own cause as much as I can. During my first round of chemo, when I was unable to keep food down and I was battling with the newness of the colostomy bag, Peggy suggested I start eating pretzels to soak up any liquid that might be zipping through my system, which also would help me keep some weight on. It worked like magic. She has access to all my medical records and asks questions when she sees something that bugs her. Peggy has been a key liaison between our doctors and the insurance company, and has gone to bat for me more than once with her bosses. But beyond all of that—and that is a lot—Peggy also reminds me that I have to go through with the chemotherapy and the surgery if I want to live.
“You do great work for CRISPAZ,” she has told me several times. “But you can’t do it if you’re dead.”
Ground zero in Cancerland ultimately becomes the treatment ward where one hooks up to an IV and receives chemotherapy. The offices of Oncology Hematology Care in Crestview Hills, Kentucky, are tucked inside a two-story red brick building that looks a lot like the other red brick buildings in the medical services park near St. Elizabeth Edgewood. The ground level is fitted out with radiology equipment and scanning gear; the second floor is where I check in with Dr. Flora and get my chemo treatments. The waiting room is always interesting.
Although I traditionally have received treatments on Fridays (which gives me the weekend to recover from the immediate effects of the drugs), I rarely see the same people in the waiting room more than once or twice—testimony, I guess, to the sheer number of patients seeking treatment at this one facility, a group so large you don’t really recognize your neighbors, let alone get to know them. Newbies in Cancerland are almost always joined by a small entourage of family and friends, and you can see the worry on their faces: They are fearful about the unknown, about taking the first steps on this journey. Whereas the regulars, like me, bring along newspapers or knitting or paperbacks, ready for the sessions that last from one to three hours, depending on the amount of chemo to be taken that day.
I think one of the hardest jobs in the world, second only perhaps to working in hospice, is that of an oncology nurse. I’ve gotten to know almost all the nurses on the floor because virtually all of them have given me chemo drugs at one time or another. No matter how bad you feel, they are cheery and helpful, ready to give you a mental boost so you can get through the process. You see people napping, their bald heads covered with knit caps; others watch reruns of The Andy Griffith Show or Gunsmoke or Bonanza (I never get enough of Hoss and Little Joe yukking it up with Pa Cartwright).
The nurses talk you through the drugs you are about to receive and they monitor the flow. You get a countdown: “Just another half hour to go, Mr. O’Connor. Then you’ll be on your way home.” When I was unable to keep any food down a year ago, one nurse, Veronica, sat with my wife, Paula, and me and offered suggestions on what I might be able to ingest. Still, no matter how kindly they are, the best words you can hear are: “OK, you’re done for the day.” And so you leave, pumped full of the poison that, you hope, will keep your cancer in check.
Living in Cancerland is a lot like being stationed on some demilitarized zone where there is still plenty of gunfire going off all the time. You have to constantly be vigilant or the enemy—the disease—will gain higher ground. And then you are doomed.
My own condition is such that my team is trying to stay far enough ahead of the cancer so that at some point we can say This thing is stopped for now. The reality is that we aren’t there yet. As I write this, I have two scans scheduled for next week to see how well a new chemo cocktail has done at keeping the cancer at bay.
Can I leave you with some good news? Well, yes. My hair is growing back, little by little. My wife says I look more like my “old self,” which I guess is good news. I’ve been following Hitchens’s reports on his disease in Vanity Fair and I seem to be doing better than he is, although thus far my cancer is more garden variety than his. That said, whatever disagreements I may have with him about God and religion, I do wish him the best.
Of course the news from Cancerland is not—in fact, cannot be—all good. My buddy in Chicago died recently after fighting his kidney cancer over the course of four years. A relative close to my age succumbed to a rare form of cancer in the spring. A cousin wrote to me on Facebook saying that her husband has been battling colon cancer but he hasn’t had to do chemo. Yet. A fellow I did contract work with about a decade ago has had a recurrence of his colon cancer, and he’s now on chemo. But then I read in Monday’s Enquirer that a new cancer therapy developed at Children’s Hospital is showing promise in causing cancerous cells to self-destruct. Not a moment too soon...
Maybe I wasn’t paying enough attention before, but now that I am living in Cancerland I can’t escape its ubiquity in the larger culture. So instead of fleeing it, I embrace it. I live my life on a day-to-day basis, a kind of warrior in a battle that has obvious deadly consequences and frequently ends badly. I pray a lot. I spend as much time as I can with my family. I think about Romero and my work in El Salvador. I listen very carefully to my doctors and nurses, trying to do what they say I need to do. And when people ask me about the experience, I like to explain to them what a blessing cancer can be. Nothing gets you more focused about living than walking out of that chemo ward and witnessing another beautiful sunny day.
Or any day, for that matter.
Originally published in the January 2011 issue.Illustration by Michael Byers
Editor's Note: In April 2012, Dennis O'Connor lost his battle with cancer. We're saddened by his loss.
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