Being a "supermom," the affectionate term Jeannie Gaffigan's comedian husband Jim has long had for her, is both a blessing and a curse. A blessing because it's allowed Jeannie to produce a sitcom starring Jim and co-produce his comedy specials—and to help craft killer punchlines—while raising five children, ages 5 to 13.
It became a curse, though, when Jeannie dismissed months of nagging symptoms—exhaustion, near-total hearing loss in her left ear, dizziness, speech difficulties, and a persistent cough—as by-products of being a busy mom or "maybe the flu."
When she finally had it checked out (at the urging of her children's pediatrician), an MRI revealed a pear-sized mass on her brainstem, affecting her ability to speak, swallow, hear, walk, balance, and breathe.
Within days, Jeannie had the mass—known as a choroid plexus papilloma, a rare but noncancerous tumor—surgically removed. She naively thought life would return to normal, but as she soon learned, recovering from a brain tumor is no joke.
Unexpected tracheotomy
The location and size of Jeannie's tumor meant recovery would be a long, slow process, says her surgeon Joshua Bederson, MD, professor and chair in the department of neurology at the Mount Sinai Health System in New York City. "The tumor had wrapped around all the fine nerves and blood vessels, creating massive brainstem compression," he says. "She was already coughing and having trouble swallowing and speaking before surgery."
Jeannie's tumor had been very slowly compressing cranial nerves over many years, explains Dr. Bederson. "I removed it in one day. Those nerves don't just bounce back. It can take many months to recover."
That proved to be the case. Jeannie's swallowing after surgery was so compromised she aspirated her food while in intensive care and developed life-threatening double-lung strep pneumonia days later. She had to undergo a tracheotomy, a surgery that creates an opening through the neck into the trachea (or windpipe) so a tube can be inserted to act as an airway and remove secretions from the lungs. She also underwent a percutaneous endoscopic gastrostomy (PEG), a procedure to insert a feeding tube in her stomach, which became her only source of nourishment for the next four months.
Focus on swallowing
Jeannie rallied from pneumonia and returned home after two weeks with the tracheal tube—which Jim dubbed her "blowhole"—and PEG tube still in place. Eventually, both would come out, but to this day, Jeannie's food must be blended or softened to go down safely. She still aspirates and chokes but now has power in her lungs to clear them. "Mostly, I'm choking on my own saliva," she says.
To strengthen her swallowing, Jeannie works with Leanne Goldberg, MS, director of speech and language pathology in the department of otolaryngology at Mount Sinai Hospital in New York City. "People don't realize what a complicated function swallowing is until they lose it," says Goldberg. "Jeannie's natural function was weakened or delayed. All movement and sensation involving the right side of her throat, including the vocal cord, was affected."
Goldberg started Jeannie on swallow therapy, based on principles of exercise physiology. "She practices the 'effortful swallow,' when she engages all the muscles together, as if trying to down a meatball in one big swallow," Goldberg explains. Jeannie also practices the "Masako maneuver," swallowing with her tongue fully protruded, which works the throat's pharyngeal constrictor muscles.
Jeannie does these exercises daily, with multiple reps and sets, and regularly visits Goldberg's office to gauge her progress. "Her recovery has been at warp speed," says Goldberg.
Breath and balance work
Jeannie also does physical therapy to improve walking and balance. "Sometimes I just spend 30 minutes moving my toes, that sort of thing."
In addition, Jeannie visits her pulmonologist monthly to monitor her respiratory system. She has to see Dr. Bederson and the neurologic team annually, now that her quarterly MRI scans have been clear for a year post-surgery. Dr. Bederson anticipates scheduling annual MRI scans for Jeannie for the next five to 10 years. "The risk for recurrence is very low," he says. "But because the tumor had grown so large, we scanned frequently in the early stages."
Lingering effects
Jeannie still deals with numbness and lack of temperature regulation on the right side of her body, and hearing in her left ear is only 50 percent, which she hopes will continue to improve. Despite these deficits, Jeannie feels grateful. "I can't complain, because I know what could have happened." Her doctor listed the possible post-surgery complications as stroke, balance and walking limitations, facial numbness, permanent hearing loss, and even death.
Morale booster
Jeannie was determined to return to being a full-time parent to her kids, who were between the ages of 2 and 11 at the time of her surgery and handled the ordeal with "incredible courage," she says. But with a tracheal tube and a PEG, that wasn't going to happen.
"I was down in the dumps because I was used to running things," she admits. "It was very challenging to watch Jim do so many things I was used to doing. But he would not have it. Instead, he would cheer me up in the way only the funniest man in the world could do."
Case in point: Jim suggested they name one of their dogs Peg after Jeannie's PEG, which they did. He tried to normalize the tube in other ways, too. "As anyone who's used a feeding tube knows, there's nothing glamorous about it," he says. "We were trying to make it palatable and not scary for our children. So, we turned it into a show."
The comedian—who rose to fame joking about Hot Pockets—means this literally. "Feeding Frenzy with Jim Gaffigan" is a series of YouTube videos created with friends and neighbors to lift Jeannie's spirits.
"When a guest would come over and visit Jeannie, we'd have them give her food through the feeding tube," Jim explains. Then he'd film the entire event in their kitchen, wisecracking about the delicious aroma of, say, powdered steak and peas. "I like to add a thing I call water!" he jokes in a video. "Yum, yum!"
"I think it gave Jeannie some power in that vulnerable situation," he says. "Humor is something we've always found useful for coping."
These funny videos became serious public service tools for others with tracheostomies or feeding tubes. "Jeannie's attitude was 'I want to share this experience with people so they know this isn't rare,'" says Leslie Schlachter, PA, clinical director and chief physician assistant in the department of neurosurgery at Mount Sinai, who has been managing Jeannie's post-op recovery team.
