New Normal

At this point, life was as back to normal as possible. In cancer terms, the period after treatment and recovery is referred to as the “new normal.” There were small every day adjustments in our lives that would never change.

The radiation therapy had damaged Dannye’s salivary glands to the point that they barely worked at all. She had to start carrying around water wherever she went. If Dannye went too long without drinking water, her mouth would dry out and become uncomfortable. Also, she couldn’t eat dry foods, and any food she did eat needed the help of water to swallow. We quickly got used to water bottles being spread out all over our house.

“We have a chair in our kitchen specifically dedicated to hold her water so that if it gets knocked over it doesn’t spill onto any computers,” Rosalynn said. “We keep water in jugs too in case the water ever gets shut off.”

Her taste buds have cycled through different stages of accurateness. Sometimes food tastes exactly as it should. Sometimes, it’s completely blank. Sweet things, like fruit, tend to taste extremely bitter to her. On rare occasions, foods would taste like something completely different. Once, zucchini tasted like buttered popcorn to her. Another time, a banana peanut butter smoothie tasted like butterscotch.

“My taste buds have gone up and down, backward and forwards and God only knows,” Dannye said. “[The doctors] were like, ‘They shouldn’t change at all after 18 months,’ and I was like, ‘Well you tell them then because they don’t listen to me.’”

Dannye having had cancer is just another part of our life, so much so that my whole family makes jokes about it.

“It doesn’t freak out all of our friends, but it does freak out some of them,” Rosalynn said. We’re like, ‘It’s fine, like our mom makes jokes about it.’ We’ve always been a family that makes fun of each other and that translates to cancer as well.”

By August 2016, Dannye had fully regained her voice. Her speaking voice was lower than it used to be, and that wouldn’t end up changing, but the lower register meant her range was actually larger than before. She could now sing a half octave lower than she used to be able to.

“I used to sing both parts of the duets from Oklahoma and Phantom of the Opera,” Dannye said. “I performed it that way a couple of times. I’d sing her part in her octave and then his part in his octave.”

She was able to perform duets with my siblings and me again, and she started singing at the Hope Lodge in Iowa City, where cancer patients who live too far away are able to live while they receive treatment. Dannye had done music therapy there in 2013, but now she got to share her cancer story with others who were going through the same thing.

About a year after she got her voice back, the new lower register of her extended range started to go. 

“That didn’t last long,” Dannye said. “And my upper range was also shrinking, but I was trying to ignore it. I rewrote music into a lower key and pretended I didn’t know why I was doing it.”

It wasn’t until the summer of 2019 that her voice really started to go. It became painful for her to sing at all, and even talking for a long period of time hurt. We knew that radiation damage continuously gets worse the longer away from treatment you get, but we didn’t really realize what that would mean for her voice.

She was still able to sing for her friend and music partner David Evans, who would play accompaniment on the piano. He was diagnosed with Alzheimer’s in 2013 and lost the ability to play in May of 2016, but Dannye continued to sing for him at Legacy Senior Living Dementia Care. My siblings and I would also cart our instruments in every once and a while and play. Evans was able to recognize Dannye through her singing for a while, even as his memory degraded. He passed away on Aug. 23, 2019.

“David’s health went down, and I was able to sing for him,” Dannye said. “But by the time of his funeral, I had pretty much lost my voice. … I can’t get my head around it. I don’t know what to do without [my voice]. I’m glad I had it for David, but I miss it. It hurts to talk.”

Dannye had a throat study done to figure out why she was losing her voice. They stuck a camera down her throat to observe the vocal folds and found that her vocal folds—which after cancer treatment had been unaffected—had deteriorated. Progressive radiation damage had spread down her throat and harmed her esophageal sphincter, a stopper in your throat that opens and closes to let food into your stomach, but stops stomach acid from coming back up and damaging your esophagus. Due to radiation, the sphincter could no longer close all the way and stomach acid was coming back up and injuring her vocal folds.

She’s had time to get used to not being able to sing again, but it’s still difficult. Dannye has been five years cancer-free since Sept. 29, 2020, and she had her voice for about three of those years.

“At this point, I don’t really sing. I try, but I know I can’t project over the piano anymore,” Dannye said. “I need to figure out if it’s bad to push through when it hurts because I went to Hope Lodge for a little while and just pushed through it. I kept thinking I had a cold but the next day my throat would be swollen and I would feel drainage in the back of it … And so the question is should I sing when it hurts or not because technically I can. I don’t know if it’s just going to hurt and it’s fine or if I’m actually making it worse.”

While it’s disheartening to know that the effects of radiation will continue to get worse for the rest of her life, Dannye tries to stay optimistic about it. The cancer was caught early enough that the trouble wasn’t with getting rid of the cancer but making sure it doesn’t come back, we were able to pay for cancer treatment and she got her voice back after cancer, even if it wasn’t forever. We all miss her voice, but we’re extremely grateful that she’s healthy.

“It’s not just me,” Dannye said. “This happens to people, they lose something that they love so dearly, and you just have to accept it and move on.”