When is a zebra not a zebra?

Most people think of zebras as beautiful animals that inhabit the plains of Africa. They feel badly when a lion or some other predator drags them down. They are harmless animals: wild horses with wonderful stripes painted on their bodies.

There is nothing cute about this disease.

The night before Jane died, her heart surgeon and I had a conversation in the hall about Jane’s struggle with carcinoid/NETs. He explained to me the adage young doctors are taught: “When you hear hoofbeats, think horses not zebras.” It exists to remind them that the most common answer to a set of symptoms is most often the right answer.

The zebra as predator

Unfortunately, when the disease actually is rare, looking for horses is exactly the wrong approach. It can–and often does–lead to death.

Most people think of zebras as beautiful animals…

“A zebra killed your wife,” the surgeon said to me. He was not cold when he said it. Jane’s death hurt him. I could see that. He had done everything he could–everything he knew how to do–to preserve her life. And he had failed. He was the kind of doctor who does not like to fail–not because of ego, though those people exist–because failure means a life gone too soon, a life ended that still had things to offer the world.

The zebra as sadistic killer

I’ve never been able to think of zebras in the same way since that night. A zebra spent 30 years kicking my wife to death. It gnawed on her guts more insidiously than any lion ever devoured a zebra. A lion kills its prey before dining. This zebra had delighted in eating her while she was still alive–rejoiced in every diarrhea bout it induced, in every sleepless night, in every painful moment created by a belly filled with gas.

‘A zebra killed your wife.’

The ancient Greeks had a tradition of calling truly hideous things that made them appear less gruesome than they were. The creatures we call the Furies–goddesses charged with punishing patricides and matricides–they referred to as the “Libation Pourers.”

Owning the zebra

Those who suffer carcinoid/NETs have done a similar thing. They have made their emblem the zebra. They call themselves zebras and refer to their support groups as zebra herds. Some even collect stuffed zebras. They wear the word almost as a badge of honor.

A lion kills its prey before dining. 

And it helps. It helps them forget about the constant diarrhea that makes any trip into new terrain an adventure. It helps them forget that they know where the bathrooms are in any store or mall they frequent–and exactly how long it will take them to get there. It helps them mask the fact this hideous zebra is slowly devouring their lives–is kicking them to death one tumor at a time.

Another long good-bye

I understand it–and I hate it. To the rest of the world, zebras are cute. To me–and to anyone who has dealt with carcinoid/NETs–they are the most dangerous and insidious of predators. They are perfectly disguised for their trade. They are more hideous than the cheetahs of the cancer community–the cancers that kill swiftly and with comparatively minimal fuss.

…kicking them to death one tumor at a time.

If Alzheimer’s is the long good-bye, carcinoid/NETs is its cancer equivalent. It takes its time killing its prey–and leaves the prey completely aware of the pain and suffering it is creating.

Hunting the zebra

People who have not seen the disease up close don’t understand. Some doctors tell their newly diagnosed patients about its slow growth habit as though that were a good thing. Those of us who have seen it know that slow growth habit makes it harder to kill, harder to diagnose, harder to find–harder in so many ways–and ever so much more dangerous than some of its quicker-footed cousins.

It takes its time killing its prey…

There is nothing cute about this disease. It is a wolf dressed up as a zebra. And every day it ends the lives of 33 more members of the herd. It’s time to hunt it down and kill it.