'Be an advocate for yourself,' says Nine Network producer recovering from Cushing's disease
This article first appeared in the St. Louis Beacon, Dec. 20, 2012 - Following some late night editing about a month ago, Nine Network producer Ruth Ezell left the station at 4 a.m. to prepare for what would be one of the most important mornings in her life. She wanted to get the editing done, even if it took half the night, because she’d be away from the office until the start of the year, recuperating from surgery.
As she prepared to check in at Barnes-Jewish Hospital at 5:30 that morning, Ezell undoubtedly replayed in her mind a scene that made her realize she needed to undergo the operation. The moment occurred when she sat with doctors in a room at BJH for a review of scans of cross sections of her head. She’d heard someone marvel at her “lovely” brain before the main reason for her visit began to sink in. Directing Ezell’s attention to a tiny section of a scan, a doctor said: “See that right there? That’s the tumor. It has to come out.”
The tumor, lodged in Ezell’s pituitary gland, was associated with an illness new to her: Cushing’s disease, named for Harvey Williams Cushing, a brain surgeon pioneer. She learned a lot about the disease from a website run by the Cushing's Support & Research Foundation. Ezell has greeted most development surrounding her illness with a sense of relief rather than shock.
“When I found out, the better I felt,” she says because she was finally getting answers to a medical mystery, which she never expected to strike a 61-year-old woman who took pride in being healthy.
Some people discover things going wrong in their bodies in ways having nothing to do with illness. For Ezell, it was the spring wardrobe of jackets and blouses that no longer fit. In an age when the typical American is overweight, a tight blouse means the wearer is taking in too many calories, a suggestion Ezell had heard from a well-meaning primary-care doctor.
“He just assumed that I was picking up,” she says, adding that “doctors probably don’t realize that we know our bodies better than they do, no matter how thick your (medical) file is.”
She insisted that the excess pounds stemmed from something else. She didn’t normally gain a lot of weight in the upper part of her body, and took pride in eating healthy food and getting plenty of exercise -- habits that, until now, had helped her maintain an ideal weight of 125 pounds. She was at least 40 pounds heavier.
Then she said something that caused the doctor to pause: “I told him if I stopped eating altogether, I would still be this size.”
That comment led to a number of medical tests. When answers remain elusive, the doctor tried one more approach. During a 24-hour period, he had her urine tested and found an abnormal level of cortisol, one of the symptoms of Cushing’s disease. That’s when she was referred to specialists. One was a neurosurgeon, Dr. Michael R. Chicoine, who talked recently about the illness without speaking specifically about Ezell’s case.
He says the disease is difficult to diagnose because the symptoms are often related to other conditions. He urges patients to seek treatment at medical centers having lots of experience because of the problems and complications that can prolong the disease.
“Cushing’s disease is caused by a pituitary tumor,” he explained. “The pituitary gland sits beneath the brain. The pituitary tumor happens to secrete an excess amount of one certain hormone, cortisol.”
While cortisol is important to the body, he explains that secretion of excessive amounts of the hormone can have harmful consequences. He then reels off a “whole cascade of problems” associated with the anomaly, including obesity, high blood sugar, high blood pressure, easy bruising, weakness of bones, and weakness of muscles.
Ezell displays two photographs of herself, one of which shows outward effects of the illness. The cheeks are swollen to the point that Ezell says she hardly recognized herself. Because the transformation happened gradually she thinks most people didn’t notice. Still, the picture, which includes stickers placed on her forehead before surgery, differs markedly from the thin face and engaging smile most people associate with her.
“It was a feeling I’d never experienced before, feeling like I was carrying around not one but a set of spare tires,” she says, pointing to her upper body. ”My friends just laughed because they had not seen the difference, and the facial symptoms had not come yet.”
Her condition would get worse before she began to heal. Among other things, she experienced swelling in her limbs to the point that she “could not see my ankles because they were really puffy,” she says. And shortly before entering the hospital, Ezell discovered she also had developed diabetes, an illness that didn’t run in her family but can be a result of Cushing’s disease.
And yet, at no point was she gripped by fear. The things that kept her upbeat included spirituality and modern medicine. She never allowed hopelessness to take control because “that’s what brings all the fear.” In addition, she says, “Every time a problem pops up, as long as there is a solution, as long as I can do something, then it’s OK.” And what if she’s at a loss for answers? “I let go of those things over which I had no control.”
One thing over which she thought she had control was deciding who would be among the first to know she suffered from Cushing’s disease. Ezell was born in Detroit and is close to her family, but she initially didn’t tell relatives, not even to her three brothers, including the one who happens to be an ophthalmologist. Instead she confided in a friend. But social media have a way of disseminating information even if the target isn’t ready to go public. That’s how her illness found its way into Facebook. Ezell found herself playing catch-up, using Twitter to let others know so they “wouldn’t have to find out through the grapevine.”
Ezell won’t return to work until Jan. 7. On the advice of her doctors, she’s taking it easy. “The swelling is going down, my weight gradually is starting to go down and my blood sugar level is good,” she says. Still, doctors have urged her not to rush into her normal routine. “My recovery is going well, and I don’t want to mess it up.”
She praises the doctors who treated her, saying, “They respect your intelligence, explained things and always asked if I had questions.” But one thing she learned from her experience is that “you have to be an advocate for yourself. Insist to your doctor if you know something’s wrong. Keep bugging them until they find it.”
Although considering herself a private person who is relatively new to Twitter, she credits social media with helping her connect and share experiences with strangers who have Cushing’s disease. She’s optimistic after getting to know people who have had good outcomes from treatment.
“In the end, everybody had a happy ending. I want to leave that with the public.”