Cachexia is a difficult word. It’s pronounced kuh-KEK-see-uh, but you could come up with any number of pronunciations simply looking at the word on a page. It’s an ugly-looking word, too, a hairball of the written word. And it signifies a rather ugly side effect of more advanced cancers. Cachexia is the wasting of muscle and body mass. It is the Steve Jobs effect, when the genius leader of Apple stood on stage during his last months thin beyond gaunt, sunken. It was clear why he had stepped away from the company.
Some mistake cachexia with weight loss. Joggers lose weight. Dieters too. Cachexia, however, is unintentional loss of muscle and mass. Fat, too, if you have it, but cachexia can begin wasting your body before you even notice its presence beneath the fat. The weight loss is a symptom of the proactive degeneration of the body rather than a byproduct of not eating. Indeed, you can eat as much as you want and still fail to contain the dropping pounds. Doctors don’t really understand it, and they don’t know what to do about it. They usually tell you to eat more. Which has a promising logic to it.
The problem is that cachexia brings on an utter lack of interest in eating anything at all. It’s not that food makes you sick or alters your taste buds, as chemotherapy might. It’s just that you have no desire whatsoever to put food in your stomach. You feel full all the time. Think of it this way: You’ve just eaten a normal American dinner: a fully roasted pig — with snout and eyes staring you down — along with bowls of mashed potatoes, huge chunks of bread ripped from the loaf, an entire head of broccoli. Bones and grease slosh at your feet beneath the table. A Big Gulp rests near your plate, a straw with all of its irritating slurping sounds poking from the lid. And then comes desert, a brownie sundae with a small mountain of whipped cream. Even Howard Taft would not be ready to eat again in the next hour. That’s because this is how you feel when you have no appetite. When you are satiated. When you lack hunger. This is cachexia.
Even if you manage to eat despite the lack of desire to do so, you still lose weight. Your body’s metabolism outstrips your caloric intake. You simply can’t eat enough. At first you’re delighted by the doctor’s orders: Eat anything high in calories. Eat ice cream. Grab the cookie jar. That extra cream in the Starbucks? Go for it. Try to eat balanced meals, of course, but when you can’t — just eat. I’ve been told to “graze,” like a cow in a field constantly, absent-mindedly, bowing down and pulling up some turf, grinding the cud with that weird sideways chew.
There has been little research on cachexia because it seems like a minor obstacle in the face of cancer (or other life-threatening diseases). Yet it contributes to a significant loss of energy and increase in fatigue. It turns your body against itself. It occurs in about 50 percent of patients with advanced cancer and is responsible for the death of 20 percent of those individuals. Seems to me a little more research is not unreasonable.
So, yes, I’ve lost some weight. I have no idea how I look to other people. All in all, I’d say I look pretty healthy. (And, in the context of my cancer, I believe I am pretty healthy.) A lot of people seem surprised when they see me, though. “Wow, you look good.” And while I don’t dispute my ravishing masculinity, I think the compliment rises more from an expectation that I would be ashen and sunken-eyed. After all, I am one of those people with “advanced” cancer.
Despite the compliments there are times, usually late at night when everything seems grimmer, when I look at myself in the mirror and see the cachexia instead of myself. I see ribs and collar bones in ways I wasn’t meant to see them. When I was first diagnosed I weighed 165 pounds. At 5’ 10’’ I’ve always been a wiry fellow. Growing up in Georgia and Florida, I participated in the normal sports regimen of the South — football, baseball, football, baseball. And then some football and baseball. Until I was a little older anyway. In high school, my “wiry” frame had the potential of turning into shattered glass going up against 200-pound linebackers. I switched to wrestling, where my size became an advantage. As in boxing, wrestlers take on opponents in set weight classes. As a sophomore, I engaged in epic conflicts of … 120-pounders attacking one another like rabid squirrels.
My historically lean frame, I think, has helped hide the degree of weight and muscle I’ve lost. There is not the shock of a heavier person gone suddenly thin, which emanates weakness and vulnerability and that sunkeness people expect. I have simply gone from skinny to skinny. There is no dramatic visual impact. But I feel it. Today I weigh 125 pounds, a loss of 40 pounds on a man who doesn’t have ten to spare. Wiry is not really the term I’d use any more. I’m embarrassed by the change in my body, to be honest, and do my best to cover it with the clothes I choose.
I don’t fool the doctors, though. My weight is often one of the first things discussed during visits to the oncologists. When I last met with Dr. Collins at Georgetown, he looked me up and down and asked me why I wasn’t holding any food. He would have been delighted if I had come into the examining room holding a turkey leg or ham sandwich. “You should be eating something all the time,” he noted. Grazing, he reaffirmed. Dena volunteered the fact that she had a pop tart in her purse, for that specific purpose. “Why aren’t you eating it?” he turned to me. “He says he doesn’t want to look like a pig when you come into the room,” she ratted me out. Learn the pig. Love the pig. Live the pig … Be the pig.
Some days, though, my appetite comes roaring back and I eat entire meals. Maybe not the roasted pig (I’ve never been able to eat animals that look at me), but a bowl of macaroni and cheese or a shrimp salad sandwich. (My mother brings her Savannah skills to bear on these sandwiches and they are irresistible. Cachexia or not.)
In the way of all things cancer, I am optimistic. I am confident I can gain the weight back. Lately I have been feeling better, some energy is returning and seafood is calling. Today is Dena’s birthday and we are going to Baltimore to stay the night (prior to our meeting with Dr. Hammers at Johns Hopkins tomorrow.) I hear some oysters calling my name. I shall answer them.