September 28, 2020
Since the tumor was completely removed with surgery, the radiation was purely a preventive measure to stop it from coming back. Dannye had hoped this meant she wouldn’t have to go through radiation, but she wasn’t that lucky. There had been a study recently that showed that young females with oral cancer often had a very aggressive form of it and it was determined that the safest option was to go through with radiation.
The problem with the radiation was that it was highly unlikely that Dannye would ever be able to sing again. Dannye knew pretty early on that radiation would destroy her voice, which is why she had wanted to avoid it.
“We just hoped for the best, I figured it was probably going to be gone but I was so determined,” Dannye said.
Photon beam radiation therapy, the type of radiation therapy that Dannye received, is a type of external radiation. It uses photon beams to destroy the cells in the targeted area. Unfortunately, it kills all of the cells, including the healthy ones.
“The idea of radiation treatment is to kill everything and assume the healthy stuff will come back. It sounds barbaric but I’m just glad we have this option,” Dannye said. “It’s better to be sick from cancer treatment than to be sick from cancer.”
Radiation therapy occurs in short repeated treatments over a length of time. Oftentimes, cancer patients have to live in an outpatient facility so they’re close enough to the hospital for treatment. Luckily, we lived close enough to the hospital that Dannye could go in every morning for her appointments. Dannye had radiation therapy on weekday mornings from Aug. 18 to Sept. 28. Each appointment lasted 10 minutes and cost $3,000.
Luckily, our insurance covered most of the cost. Aaron had set up the health savings account so that we had a high deductible of around $5,000. But once we reached our deductible for that year, the insurance would pay the rest of it.
“During the couple of years when we were paying for the cancer treatment we hit our deductible almost immediately,” Aaron said. “I set it up so we had a nice buffer of 10 to 15 thousand dollars and as we went through that it obviously got depleted until we were basically down to zero at the end of cancer treatment. But that was sort of the plan.”
We also had a lot of support from friends, family and our church that helped out with appointments and food.
“I had to work throughout the whole thing,” Aaron said. “Work was really flexible, they gave me whatever time I needed, so I was able to go to any appointment that Dannye said, ‘Please come to this appointment with me.’ But otherwise, we were lucky because we had friends and family help out.”
During the radiation appointments, it’s imperative that you stay as still as possible, so the doctors tie your feet together, have you hold onto a bar, and mold a mask to your face that gets bolted down.
“It wasn’t claustrophobic at first,” Dannye said. “After wearing it I would get a snakeskin imprint on my face, especially after the swelling later on. But it wasn’t claustrophobic until the very end. Because it’s a nice room. They’ve got a pretend skylight where you can see and they give you a heated blanket. The problem is that they tie your feet together, and I remember telling the guy that if the zombie apocalypse was coming, he had to come in and untie me first.”
The effects of radiation are delayed by about two weeks after treatment starts. So after the first nine treatments, the symptoms started appearing. Dannye described the symptoms as a bad head cold. She had trouble swallowing, soreness in the mouth, and fatigue. Her salivary glands were starting to fail, and not long after, her taste buds stopped working. The symptoms continued to get worse, and she was put on medication to help with the pain.
Dannye was in speech pathology now, but most of the work was on the ability to swallow. The goal of speech pathology was to help Dannye relearn how to talk with damage to the throat and part of her tongue missing. They worked a lot on talking loudly without putting a strain on her voice and on talking out of vocal fry, or the lowest vocal register.
Tuesday, Sept 1, they had to put in a feeding tube. Dannye has an off and on dairy allergy so they had to find a formula for the feeding tube that was dairy-free. Except, there was a miscommunication between the nutritionist, social worker and Dannye herself mostly over the difference between a dairy allergy and lactose intolerance. Essentially, a dairy allergy is an allergy to all dairy products not just to dairy products with lactose in them.
The mix up led to Dannye being given the only dairy-free formula they had: infant formula. To add to the problem, she wasn’t being given any pain medication because the pain meds were on the second page of her meds list and were forgotten.
“[The doctors] were told to use just one can of infant formula and let it go through very slowly,” Dannye said. “But no one checked with the nutritionist and no one seemed bothered by the idea of giving a grown woman one can of infant formula very slowly.”
They got the switch up fixed by the next morning, but between Monday night and Wednesday morning, Dannye had received only 30 calories. She was also highly dehydrated but no one gave her an IV, and her lack of saliva made her very difficult to understand. They still didn’t give her any pain medication, but she was able to go home later that day and take her medication. The situation was eventually resolved through a series of emails between the nutritionist and Dannye, but the whole experience was very stressful.
Sept. 28 marked Dannye’s last day of radiation. At this point, her symptoms were terrible. Dannye had developed ulcers in her mouth, her throat and nose were filled with mucus, a half-circle of hair at the base of her head had fallen out and there were burns all along her neck and face.
Per tradition for finishing radiation treatment, Dannye got to ring the bell at the hospital three times.
“It felt good to be done with it, but there’s also the kind of, my treatments are done. I’m supposed to be better but I’m not yet. And it got worse for a bit. And I wanted to be able to sing again,” Dannye said.