• 4/22/2008
  • Knoxville, TN
  • Kristi L. Nelson
  • knoxnews.com

A long, deep yawn.

A bite of a chocolate bar or crab meat.

A vigorous brushing and thorough flossing.

For 2 1/2 years, Esther Cahal has forgone these and other small pleasures most people take for granted.

An unusual complication from a rare form of particularly aggressive tongue cancer left Cahal’s mouth locked shut, able to open barely wide enough to insert her little finger. She stays alive by hooking herself up to a feeding tube unit each night and sleeping in an upright position while she “eats” a liquid nutritional supplement for eight hours through a port in her stomach.

A little more than a year ago, Cahal, facing a recurrence of her cancer, “decided that before I die, I’m going to eat again,” Cahal said. “If this cancer’s going to kill me, at least I’m going to have something good down my throat.”

But Cahal has had two “clear” scans for cancer – and now an innovative physical therapy treatment is helping open her up to experiencing food again.

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It started in February 2004, when Cahal’s dentist found an ulcer on the right side of her tongue. She thought the skin was irritated by a tooth, but when the tooth was fixed, the ulcer still didn’t heal. So she had a biopsy.

“It came back as extremely aggressive cancer,” Cahal said. “It was a surprise for everybody, because I didn’t have any risk factors.”

The type of cancer Cahal had most commonly affects men older than 60 who drink alcohol, smoke or use oral tobacco products (“dip”). Not only did Cahal not have any of those habits, she had no family history of any type of cancer. In fact, she’d been out sick from work only two days in her then-22-year career as a physician’s assistant.

Cahal had surgery to remove the cancer, followed by six weeks of weekly chemotherapy and seven weeks of daily radiation, a course designed to minimize the chance the rare cancer would come back.

The radiation burned her skin badly, and by the second week she couldn’t swallow. That’s not a common complication of radiation, and Cahal’s doctors weren’t sure why it happened. But by the fall of 2004, not only could Cahal still not swallow, she couldn’t open her jaw because of scarring from the radiation, which badly burned her skin.

Then, almost a year to the day, her cancer came back. This time, surgeons removed a third of Cahal’s tongue. She had eight more weeks of chemotherapy. A few months later, a test showed the cancer in her lymph nodes. She had all the nodes removed from her neck. Seven months of weekly chemotherapy followed, then Cahal finished up five more weeks of radiation to just her neck area in December 2006.

During the radiation treatments, Cahal was burned so badly that when she turned her head, the skin would crack and bleed all the way down her neck. Her daughter, now 11, was so distressed by her mother’s appearance that Cahal sent her to stay with a friend for three weeks.

“She asked the really hard questions: ‘Are you going to be there when I graduate from high school? Are you going to be there when I have my baby? Are you going to be there when I get married?'” remembered Cahal, who said she was always honest with her children. “I said: ‘I don’t know. I’m trying.’ That’s all I could tell her.”

Cahal had PET scans in July and December 2007, and neither showed any cancer. It was the first time since diagnosis that she’d had two “clear” scans in a row.

But she couldn’t open her mouth to shout for joy; her jaw was still locked tight.

Since moving to Knoxville from Johnson City, Cahal has been under the care of otolaryngologist Dr. Mark Overholt. Overholt recommended physical therapy to try to solve Cahal’s problem; he even tried to manually force her jaw open when he was operating on her cancer. He had to stop for fear of breaking the jaw.

“We tried a lot of different things to treat Esther,” Overholt said. “None of the things seemed to work very well.”

Then last September a colleague in the neurosurgeon’s office where Cahal works as a P.A. heard about a local seminar being given by Indiana physician Dr. Thomas Sevier, on a rehabilitation system, ASTYM, that he developed to treat chronic tendon disorders, scar tissue and fibrosis. Because Cahal couldn’t attend, her co-worker brought her some material.

She contacted Sevier to ask him if he thought his system could help her. He’d not used it for her particular problem, he said, and told her, “‘I don’t know if you can swallow again, but I can probably get your jaw open,'” she said. “I said, ‘Well, if you can get my jaw open, I’ll be happy.'”

Cahal agreed to try 10 sessions of ASTYM, formerly called ASTM for “Augmented Soft Tissue Mobilization” (the “Y” was added later to aid with pronunciation). She made an appointment with physical therapist Susan Daugherty of Benchmark Physical Therapy in Farragut. Daugherty was the first of about 25 PTs in Benchmark’s 55-clinic network to become ASTYM-certified. She’d enjoyed success using the method to treat patients with chronic tendinopathy, postoperative scarring, Achilles tendinitis, carpal tunnel syndrome and plantar fasciopathy, which is notoriously frustrating for both patients and PTs because of its difficulty to treat.

During the manual ASTYM treatment, a PT uses acrylic tools to locate and put pressure on scar tissue, increasing blood flow to the scar and ultimately helping the tissue heal, Daugherty said. The tools allow a PT to feel “bumpy” scar tissue more easily and to work on a larger area without tiring out, as happens when doing deep tissue massage with the hands alone. It works on patients who have immobility problems caused by scarring; patients whose problems are caused by inflammation won’t benefit, she said.

Daugherty hadn’t used the method on a patient’s face, however, and Cahal had little confidence it would work for her. Still, she thought, “It can’t hurt.”

She was wrong. The therapy did hurt – a lot. Though Daugherty isn’t pressing especially hard, Cahal’s facial tissue is very tender.

“She’s not gentle,” Cahal said, laughing. After a session, “I look like I’ve been slapped around,” because the increased blood flow to the scar tissue makes her skin red.

But it also worked. Within two weeks, Cahal was already seeing improvement. A visit to Overholt confirmed it: she could open her mouth wide enough that he could get his finger in the back of her throat.

By November, Cahal was able to eat her first food in more than two years. She had a bowl of vanilla pudding.

Cahal is now regularly eating soft foods, such as soups and mashed potatoes. She still has some trouble; enough of her tongue is missing that she can’t move food around in her mouth, and she lacks sensation at the back of her throat. Daugherty also takes her through exercises to strengthen muscles she hasn’t used in years. But she’s not complaining.

“You don’t realize until you lose the ability to eat, how social that is,” said Cahal, who said waiters have asked her why she didn’t like their restaurant’s food, and people have accused her of being anorexic: “I was always having to explain why I wasn’t eating.”

She still has to supplement with her “liquid supper” at night, since she can’t yet take in enough calories by mouth. But it’s “a big breakthrough when you can’t eat anything at all,” said Overholt, adding, “Six to eight months ago, I thought she probably would be dependent on a feeding tube for the rest of her life. Now I’m optimistic that she won’t.”

Cahal’s next goal is to be able to open wide enough to go to the dentist. A tooth that’s been bothering her will now probably have to be removed, because her mouth has been closed too tightly even for pediatric dental instruments. She also hopes to be able to yawn, and to swallow a pill. Right now when she gets a headache, Cahal must either dissolve a pill, which takes about an hour, or have on hand specially ordered ibuprofen that has been compounded into liquid form at about $50 for 10 800-mg doses.

And maybe someday she’ll be able to eat more of the foods she misses, like chocolate.

“I miss being able to bite a chocolate bar,” Cahal said. “But if I can never eat regular food, that’s fine. I never really thought I’d eat again.”

Since the radiation also left Cahal’s tongue scarred, her sense of taste is diminished. Daugherty has begun using the smallest ASTYM instrument to massage Cahal’s tongue, on the off chance it might help bring some of that back.

“Her story is so inspiring,” Daugherty said. “It makes you really glad for the profession you’re in. … Really changing someone’s life in big ways is just so awesome.”

Cahal hopes others with similar problems will learn from her experience and start ASTYM treatment earlier; her scar tissue was already quite calcified when Daugherty began treating her. Had she known it would be so effective, she said, she would have started during radiation.

“I’m just glad she was willing to go off the road” of tried therapy to help, Cahal said.