Relearning to speak, eat without a tongueTweet
By Ashley Barker
Prior to being diagnosed with tongue cancer at the age of 24 last year, Aliyah Howard had dreams of becoming a speech pathologist. She graduated from Columbia College with a bachelor’s degree in speech pathology and was pursuing her master’s degree at South Carolina State University when squamous cell carcinoma forced MUSC surgeons to remove her tongue.
She endured six weeks of chemotherapy and radiation after surgery while learning to speak and swallow again with only a small portion of tissue that was removed from her shoulder blade to act as a tongue placeholder.
|Julie Blair, a speech language pathologist, points at a video of a patient swallowing as Aliyah Howard, a Columbia College|
student doing her field work at MUSC, observes.
Since September 2012, Howard has been cancer-free and back to work on her master’s degree. Instead of staying in Columbia, she chose to do her field work at MUSC under the direction of the same speech pathologist who guided her through the process of relearning to speak.
“The cancer was a major concern for me because, ironically, my major is speech therapy. I was really upset about that,” Howard said. “Talking to my speech pathologist here, I asked her ‘How am I going to be able to find a job sounding like this?’ She said I’d have to use this disadvantage as an advantage and be an advocate for the patients. That made sense. You can’t help but think this happened for a good reason.”
Her voice sounds different than what it was before. Some words are harder to understand than others, and some sounds don’t come out just right, like those associated with “str” and “skr.” But she’s connecting with patients in a whole new way.
“We work with people who have a lot of voice problems, because something is wrong with their thyroid, they’ve overused their voice or are just not hydrated enough. We also work with people who have swallowing problems so we do swallowing X-ray tests to see the inside of the throat,” Howard said. “The patients find me interesting and want to know what happened.”
Julie Blair, a speech language pathologist who Howard worked with as a patient and now during her field work, said Howard was reluctant to talk to her family and friends initially but has helped patients get past that fear.
“Cancer patients, particularly, have found her story reassuring. Most of them, because she is one of our younger patients, are surprised to hear she’s had cancer and gone through the treatment,” Blair said. “They’re encouraged by the fact that she has come as far as she has.”
Eating has always been a challenge since her 15-hour glossectomy (removal of the tongue) back in June. It’s far harder for her to swallow food and liquid than a person with a working tongue. But she doesn’t let the extra effort get in her way. She chops her food into smaller pieces and drinks lots of smoothies.
If she doesn’t have time to sit down and eat each meal slowly, Howard must supplement her diet with a feeding tube in her abdomen. She also is working with a maxillofacial prosthetic dentist for a customized prosthesis that would help her swallow food easier.
“I don’t eat a standard meal. On Thanksgiving, I had macaroni, cranberry sauce and sweet potatoes, but no meat,” she said. “With the prosthesis, I’m hoping to be able to have the feeding tube removed. The prosthesis kind of looks like a retainer that would sit in the top of my mouth and help push the food back to the throat.”
Howard also struggled with the initial diagnosis and the radiation. She said there was a “really long, depressing seven days” between her ENT suspecting cancer and the MUSC staff confirming it. She also didn’t realize how much the chemotherapy and radiation would slow her down. It took nearly a month after treatment for the 25-year-old to finally feel her age again.
“Cancer is terrible but you see things differently. You appreciate life, as a whole, so much better. I was in the hospital for nine days, and moving around was tough for me,” said Howard. “Simple things like that, like walking around outside in the fresh air, mean so much more to me. The small things in life are now more special.”
|Oral Head & Neck Cancer Awareness Week|
Now that she has gone through the process and survived cancer, Howard is learning to relate to her patients and show them what they can accomplish. She will be a guest speaker at various local schools during Oral Head & Neck Cancer Awareness Week, April 14-20, and plans to attend several events.
“She’s a special case. I joke that Aliyah is the poster child for what can be accomplished after a glossectomy,” Blair said. “She brings a unique perspective to the clinic. When I’m telling patients about what they’re likely to experience, I’m telling it from a clinician’s perspective. When Aliyah is talking, she’s giving a personal experience. Just like in a support group setting, patients take a lot of comfort in knowing that right now their mouth hurts, their face is swollen and they’re in pain but it will get better. The hole in their neck will close and go away. It’s scary for them, but Aliyah helps with that.”
For more information about Oral Head & Neck Cancer Awareness Week, visit headandneck.org.April 11, 2013