Lymphoma and the Insipid Victory
How medical science made "battling" cancer less than revelatory
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.
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.
He went on to predict, against everything I'd read or heard to that point, that I wouldn't even lose all of my hair. In the moment, that seemed like better news that an 85% survival rate. As to going through my chemotherapy, he said he'd be more than happy to treat me, but that medical science was such the boss of Hodgkin's, that he'd trust the treatment of his own daughter to just about any hospital in the country.
I'm always haunted by Christopher Hitchens' palpable essays from his final days succumbing to esophageal cancer, and it doesn't take much digging around online to break your heart on gut-wrenching stories of cancer. I started to feel like medical science should classify cancers in one of two major categories: "Extremely lethal" and "Don't worry, we got this."
In the end, I opted to undergo treatment at my neighborhood hospital because, to quote the MGH doctor, "There's something to be said about being able to go the hospital in your pajamas." MGH was an hour away without traffic. St. Joseph's was mere steps.
Before I knew it, it was time for my first day of chemo. I was introduced to the nurse who would be poisoning me for the day, and then was toured around what was a pretty nice facility. It consisted of a long comma-shaped room, the outer, arcing wall of which faced outside, allowing for a well-lighted area from the windows spaced regularly along it. The wall was lined with afghan-draped recliners, which then wrapped around at one end so that some of the recliners faced each across an empty space of floor. Each infusion station had its own IV stand and a curtain that could be pulled around for privacy, and there were TVs built into the walls and placed onto carts for whomever wanted them. There was also a kitchenette with free snacks and drinks, and a glass door led to a patio.
My personal cocktail of cure was referred to as ABVD, an acronym for the chemicals adriamycin, bleomycin, vinblastine, and dacarbazine. They dripped each one into my chest port separately over the course of about four hours. They also dripped steroids into me, both to ease the side effects and to make the treatment more effective. When each bag depleted, the IV machine would beep to let them know to hook up the next one.
In all, it wasn't too bad. It was a new experience, the nurses were great, my wife was there the whole time. Best of all, we were actively treating my cancer.
Twenty-four hours later, the sickness kicked in. "Wasn't too bad" stopped being a phrase I used for a long time. It was unrelievable agony. Nausea that wouldn't subside, aches that couldn't be soothed, weakness that wouldn't leave me. I'd been told chemotherapy affects different people in different ways, and that some are barely affected. I figured that since I was young-ish, it might be that way with me. No. I instantly aged three decades. When I could get off the couch I would shuffle around bent-over and covering a few inches a minute. Food helped a little, but I could only stand the sight of certain kinds and it took me a while to learn which ones. The other side of that is my intestines weren't working correctly, either. My body hated my chemical justice for its betrayal. I have no problem wishing a lot of things on a lot of people, but chemotherapy side effects is not one of them.
And then, four days later, just like that, the illness was gone.
From then on, I learned to live and plan around getting sick on schedule. Every other Monday was infusion day. Monday night I felt fine, but the steroids would keep me up all night, so that I'd often have to skip work the next day. Tuesday is when the sickness crept up on me like something repellant growing inside of me. Wednesday, I was increasingly sick but could persevere enough to go to work. Thursday, I was prostrate. But by Friday night I was better. The next week was my off-week, where I was completely normal, like I wasn't being killed by both a disease and a treatment.
Around the house, we started calling the condition Dexter's Disease since just a couple of months before my diagnosis we had watched Michael C. Hall -- the man who plays the titular serial killer in the Showtime series Dexter and who had contracted the same disease -- accept a Golden Globe for his performance wearing a black knit skullcap to cover a head bald from treatment.
With each round of treatment, the side effects grew more acute, their duration longer. I'd even experience them psychosomatically in my off weeks. For instance, there was a certain shade of red that always made me nauseated. That's because one of the chemicals in my chemo-binge, adriamycin, was red, and it would turn my urine a diluted shade of the color for the rest of the day. Even now, if I see that peculiar shade of red, I have chemo flashbacks.
The one place where my experience did gel with those aforementioned cancer motivational speakers and writers is that the only way I made it through was the support of family and friends. Next to my wife, probably the biggest help was somehow the company I worked for. They gave me ultimate flexibility in dealing with my cancer. It was a contract research organization -- the company to which pharmaceutical companies outsource their testing of new drugs. Testing, as in, on animals. At my interview, I was asked, "Are you okay with animal testing? Because that's what we do here." I hadn't known before the interview, and had never really given the topic much thought. However, I needed the job to move to New England, so I said yes.
Since I was in the marketing department, I didn't see the animals too much. It was mostly mice and rats, but there were other animals, beagles, macaques, guinea pigs, even saw a room full of sheep once. It bothered me, certainly. However, we created a lot of marketing collateral around how the research eased human suffering and saved lives. It became apparent to me quickly that either you're okay with animal testing, or you can never so much as take a Tylenol without being a hypocrite.
Now that I had cancer, I started paying more attention to the oncology "models," as the animals are called. I started noticing that chemicals in my ABVD regimen were being used to condition mouse models for research on how the drugs work, or to induce certain conditions that could then be studied -- the process that yielded the brew that was saving me. I wasn't so much writing marketing materials anymore, but autobiographical literature.
In between visits to the infusion room, I'd have to come in for other tests. Bloodwork, for instance. That was a constant. Staff always greeted you with a syringe. There were also lung tests and PET scans, the latter performed in a truck-trailer mobile unit that they pulled up to a loading dock, where they'd inject a radioactive tracer into my veins and then tell me not to touch my infant for 24 hours due to my slight radioactivity. I had similar restrictions after each chemo session.
The monotony of sickness-on-schedule was broken up here and there with unpleasant surprises. After my first infusion, my white blood cell count dropped so low that they had to quarantine me in my house and then skip my next chemo session to wait for my bone marrow to produce more. It would be a continuing problem, so I was always given Neulasta shots to stimulate production.
Like the MGH doctor predicted, my hair never fell out. The hair on my body thinned pleasantly, my eyebrows thinned disconcertingly, and my beard stubble was so soft that it looked effeminate. Only chemo could make a beard look effeminate. I also maintained a consistent weight throughout. Unless I told them, people didn't know I was undergoing chemotherapy.
My book debuted while I was still in treatment. With it came a season of appearances and interviews, which I scheduled around my sickness. Not once did my affliction ever come up in public. If I'd written the book after my chemotherapy rather than before it, it would probably have turned out exactly the same. Except maybe more cancer jokes.
And it makes sense to me. At no point, other than that one 45-minute car ride, was I looking death straight in its hollow eye sockets. My brush with it just wasn't bristly enough. Once it was discovered, cancer never really had a chance to kill me, and that's thanks to medical science, from the animal models to the pharmaceutical companies to the peer-reviewed research papers to the awesome oncologists and nurses. That's a pretty big buffer between me and death, and a pretty wide ray of hope for the future treatment of "extremely lethal" cancers.
Eventually, my own treatment was over. The nurses gathered around me and my wife on that last infusion session, and gave me a big send-off complete with a picture and a grade-school-style certificate of achievement. I guess I beat cancer. Or survived it. Or whatever phrase people use to inaccurately describe the process of sitting in a chair for hours while the collective expertise and knowledge from decades of research does its thing. Now, when I hear about people's cancer ordeals, I hardly feel a kinship. Mine doesn't feel like a real cancer experience. There was the sting of needles, but no sting of death.
Two years later, the biopsy scar on my neck has faded to almost invisibility. My wife's the only one that ever sees my biopsy scars. I do still have two scars on my chest, one from where they put the port in, the other from where they took it out. They're pink, parallel, and each about half an inch wide. They look like a lipstick stain and always remind me of that part of Heinlein's Stranger in a Stranger Land where Valentine Michael Smith gives the tattooed lady a kiss on the chest that miraculously imprints among the rest of her tattoos.
I still get biannual blood tests and annual PET scans, but that's mostly to monitor any ill effects of the treatment, not the disease. The last time I saw her, my oncologist used the other C word -- cured.
I still find death fascinating and weird, and I still write about it, but I consider myself on no more intimate terms with it than I was before my diagnosis.
I also still live beside St. Joseph's. Now when we pass it, I know exactly what's going on behind that distinctive first-floor arc of windows. Esme always points to the hospital and says, "That's where I was born," and I don't have anything really to add to that.