Lymphoma and the Insipid Victory

How medical science made "battling" cancer less than revelatory

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The one thing I thought I'd salvage from my cancer ordeal was a new attitude. Like anybody else, I'd heard plenty of talks and read plenty of articles from cancer survivors extoling platitudes about gratefulness and seizing days and reevaluating priorities. It's supposed to be revelatory. It turned out my particular cancer was more miserly than that. 

I'm not a better person for having endured it, nor do I have better insight into the value of life -- and I blame medical science for that.

I've always been fascinated by death. Over the course of 2009, I traveled New England to write a book that chronicled my experiences visiting some 200 strange, death-related sites and artifacts. A book bound in human skin. The collected artwork of Jack Kevorkian. The grave of the Boston Strangler. I traveled more than 7,000 miles in a year-long Halloween, loving every hourglass grain of my macabre project.

In March of 2010, just one month after I delivered the completed manuscript to my publisher, I got a call from my doctor with some of the worst news of my life.

A few weeks previous I had noticed a swelling on the right side of my neck. I didn't think too much of it, figuring it was a swollen lymph node. I'd noticed it before during a tooth infection, and thought it was a recurrence. My teeth have been at war with me and my bank account for a long time. My wife disagreed, which was how I found myself at the doctor who, after tenderly probing it with latex fingers, decided to do a fine-needle aspiration. Basically, he took a sample of the core of the node, hoping to find enough of the tissue in question to diagnose the cause of the swelling without having to slit my neck.

It was after that I got the call. He said simply, "You have Hodgkin's lymphoma." Then, like the words after the colon in a movie title, "That's cancer." 

I thanked him politely, hung up the phone, and then left work. I didn't tell my boss, any of my colleagues, didn't set an automatic email response. Just picked up my laptop and my newfound insight into the infidelity of biology and left.

Believe it or not, my 45-minute commute to my home across the state line in New Hampshire was the worst point mentally of my entire cancer experience. 

All my lowest moments have been while driving my car. It's the only place I can lose my inhibitions enough to belt out "Paradise by the Dashboard Light," so it makes sense that it's the only place I can lose my inhibitions enough to wallow in abject grief or seethe in frustrated anger. Plus, problems are always contextualized by the ebb and flow of vehicular life around you. People going to work. People visiting friends. People running mundane errands. All just feet of asphalt away from everybody else, all completely indifferent to each other's plight. Traffic is lonely.

I started to feel like medical science should classify cancers in two major categories: "Extremely lethal" and "Don't worry, we got this."

As to my real reaction, the one my doctor didn't get, it was sorrow, sure, but more anger. Hot tears, bared teeth, bruised fists from punching the steering wheel. But the anger wasn't focused at anybody, thing, or deity -- unless you count the car in front of me that was going too slowly, apparently oblivious to the fact that my mutated cells weren't affording me the luxury of time to kill.

I arrived home to an empty house and settled down on the couch to steel myself for what came next. Not long after, Lindsey, my wife of 15 months walked in, carrying our four-month old daughter Esme.

That's what made me mad, really. The idea that I may have married and fathered a child just in time to widow the one and orphan the other. 

Lindsey joined me on the couch and handed me Esme. I played with her more sincerely than I'd ever interacted with her in her short life while conversing with Lindsey about the details of her day. Then I finally got up the nerve to tell her the details of mine. I told her I had Hodgkin's lymphoma. I even gave it the subtitle, "That's cancer."

She took it about as you'd expect, but there was more of a backstory to her reaction. A year or so earlier her father had been diagnosed with prostate cancer, and it had been a rough time as he went through various tests and eventual surgery. He wasn't quite out of the woods, and now she had two loved ones wandering around in there. After a while, though, she started asking me a lot of questions that I realized I should've been asking, too.

So we turned to the Google. In reading about the disease, things started looking up. Cancer is obviously a family of diseases, each different in its pathology, but all sharing in common abnormal cell growth and mortality. As to my particular brand, Hodgkin's lymphoma nests in the lymphatic system. That's a part of the immune system that's supposed to help keep you from getting sick. 

It's a rare cancer, representing only one percent of all cancers in the U.S. Like many cancers, its cause is maddeningly unknown. Maybe it was all the diet soda I drank or the road trip I took that one time to Three Mile Island, or the fact that I have a black cat that always walks in front of me when I'm on the treadmill.

We do know that the disease usually hits males between the ages of 15 and 35 and over the age of 55, so I almost made it past the target demographic. However, I didn't have any of its risk factors (a family history, AIDS, weakened immune system) or any of its symptoms (prolonged fevers, night sweats, itchiness, weight loss, weakness). It was only that one swollen lymph node that by this time had been incinerated in a load of medical waste.

Best of all, we learned that treatment for Hodgkin's lymphoma is pretty successful. According to American Cancer Institute statistics, the five-year survival rate is 85%, and ten-year is 81%. In researching, we also learned about non-Hodgkin's lymphoma, a related, but more serious and faster-acting cancer. I'd missed extremely bad news by three letters and a hyphen.

I had my first meeting with an oncologist the next day, at St. Joseph's Hospital in Nashua, which is right by my house. My oncologist was a beaming black woman with a ready laugh and an endearing manner. She explained to me about chemotherapy, all the stuff that by this time anybody who's watched the first season and a half of Breaking Bad knows. Intense nausea, loss of hair, weakness, a host of other side effects. Basically, any way your body can protest you dumping chemicals into it, it will. The side effects were going to be bad, but she said it pretty much was a lock I'd survive. Depending on the staging, of course.

Staging involved a trip through the cold white ring of a CT scan and then a bone marrow biopsy. For the latter, they take a long hollow needle and (while you're conscious) stab it into your bone to pull out a sample of the marrow and see if the cancer had metastasized there. In my case, it was the back of my pelvic bone.

I walked into a small room and was given a paper cup with a Vicodin in it. I took it like an obedient patient, and within minutes I was above the ceiling. It made every bit of sense to me to lay on my stomach on the examination table while my oncologist dug a metal shaft into my skeleton. In my head, I imagined she was using a comically large corkscrew.  I didn't feel a thing. 

Next, I got a chemotherapy port installed in my chest. The chemicals from chemotherapy are introduced into the bloodstream, and the usual mechanism for accessing the bloodstream, through the veins in a person's arm, is less than ideal for the demands of chemotherapy. That's because those veins have to be accessed multiple times each visit (to infuse different chemicals in the chemotherapy regimen and to take blood samples) and because the corrosive nature of the chemicals can damage the veins.

The surgeon showed me the port before putting me under to implant it. It was a lug-nut-sized metal ring with a rubber center and thin, flexible tubes tentacling off it that are inserted into one's neck veins. It was implanted into the right side of my chest, in a spot about two inches below the collarbone. None of the apparatus is external, and it appeared only as a marble-sized lump under the skin. The idea was that they could then use a special needle to spear the center of the lug nut through the skin just one time per visit, where it would stay while they draw blood and deliver the various chemotherapy agents with a larger-gauge needle into hardier veins.

It took a long while to get used to having a lump in my chest. Even though it didn't hurt, anytime I accidentally brushed it or my child grabbed it with infant hands perfectly sized for it, the wobbly metal bit just felt wrong. 

Meanwhile, my CT and bone biopsy results showed that I had stage II Hodgkin's lymphoma. This was out of IV, so it could've been worse, but could've been better. When it comes to Hodgkin's that's pretty good, though, and my oncologist figured six months of chemo should do it, and that I probably wouldn't even have to undergo any radiation treatments afterward. She recommended I get a second opinion for my own peace of mind, but that I needed to be in treatment as soon as possible.

And that's how I found myself at Massachusetts General Hospital, one of the preeminent medical institutions in the country. It's huge and alive. Helicopters flying from its roof, ambulances in a constant train at its main entrance, crowds of patients and staff streaming about as if the business of life, death, and sickness were as mundane as any other business. It might have been overwhelming, had I not actually been there a few months earlier for my book project.

MGH had on public display a 2,500-year-old Egyptian mummy named Padihershef, who during his life was a stone artisan in Thebes. The ancient body artifact and memento mori was given to the hospital as a gift in 1823. It was only the second full-bodied mummy to ever come to the U.S., and the first to arrive complete with its decorated sarcophagus. MGH used the mummy for fundraising, touring it around the country to a populace that wouldn't see a Boris Karloff movie for another century.

Padihershef was eventually retired to a room in the historic Bullfinch Building of its campus, where, in 1846, it presided over the first public demonstration of ether on a patient, a medical breakthrough that put a crimp in whiskey sales and opened up the discipline of anesthesiology, which meant that a century and a half or so later I could get a cancerous lymph node removed from my neck and a metal implant inserted into my chest without any memory of either other than a vague sense of loss and addition, respectively. The room is now called the Ether Dome, and anybody can visit it.

I didn't, though. I met a doctor who was something of a medical badass. He wasn't wearing a leather jacket or jauntily chewing on a tongue depressor or anything like that. He looked like the typical doctor -- tall, thin, neat, and bespectacled. He backed up everything Google and my New Hampshire oncologist had said, but with more confidence than both put together and balanced on top of Arthur Fonzarelli's thumbs. In fact, he went further. One of the first things he said after hello was, "There's no such thing as a good cancer, but if you have to have one, this is the one you want." I don't know how, but the way he delivered the statement made me feel like I'd been rewarded instead of stricken.

Presented by

J.W. Ocker is a writer based in New Hampshire. He is the author of The New England Grimpendium and The New York Grimpendium, and is the creator of Odd Things I’ve Seen.

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