September 28, 2020
With radiation completed, the only thing left was to slowly recover. However, because symptoms of radiation take about two weeks to show up, the two weeks after radiation ends are always the worst. And with no end goal in sight, recovery is very difficult for your mental health.
“I’m not in the best of spirits because I don’t know how much longer this will take,” Dannye wrote in a Facebook post shortly after radiation finished. “It’s so hard to get up every morning and realize that you’re feeling worse than the day before. You keep pinning your hopes on the next day to be the turnaround day and it’s so depressing when it’s not.”
It was easy to underestimate how long and difficult recovery was going to be. Dannye still couldn’t swallow and they continued to increase the pain medication for weeks after radiation ended. The hurdles that Dannye needed to get over seemed almost impossible to clear at that point.
“Big bumps in the road include learning to eat, hoping my taste buds return, hoping my singing voice returns. Getting back to being able to stay awake all day and chase toddlers for a living seems impossible right now,” Dannye wrote.
Eventually, they were able to turn the meds around and start to decrease the doses, but that just led to more problems in the form of withdrawal.
“I’m six weeks post-radiation and in active recovery still,” Dannye wrote in her log in November. “I’m having a hard time with pain and mood swings, trying to work out withdrawal symptoms on the narcotics.”
Her mental health got bad enough that Dannye went to see her psychiatrist. She tried therapy at first but eventually decided on another medication. She was hesitant to add another medication onto the list that she was trying to step down from, but her depressive episodes were too bad to do nothing.
“I just imagined what my mother [who had worked in hospice] would say at the time and she was like, ‘Yeah, I know you’re worried about another med but this one’s very mild and you have to get through now and worry about that later,’” Dannye said.
Along with psychiatric medication, Dannye also did some basic therapy mental exercises to stay positive. And, to lift her mood, Aaron planned a trip to Disneyworld in April.
“I was feeling bad about how exhausted Aaron was, and he was feeling bad about everything I was going through so much that I got a surprise a few days ago,” Dannye wrote in her log. “He brought me something and asked if there was anything else he could do for me. And I joked that he could take us to Disney and he says, ‘Well, I’ve been looking at flights.’”
“It was basically, we’re going to go on vacation when you get better,” Aaron said. “And Dannye loves Disney and so we decided to go to Disney World. Could we afford it? Maybe not, but whatever, it’s fine.”
It was slow going, but Dannye continued to pass different milestones. In November, she was able to sleep lying down and still be able to breathe, she was able to taste the salt in her mouthwash, and she was able to go a night without pain medication.
The end of November and December were the worst mentally because Dannye was fully walking down from the drugs.
“On my good days I can work and clean the house and make dinner but not eat it,” Dannye wrote in her log. “And on my bad days, I cry a lot and sleep a lot and feel very useless and awful. I want to be done with cancer treatment. It would be worse if it was the kids but it seems like it’s everything else important: running, eating, my singing voice.”
But it continued to get better, Dannye had a PET scan that confirmed that she was still cancer-free. Because she was younger than most oral cancer patients, her teeth weren’t too damaged by the radiation and she was able to keep them all.
Over time, Dannye was able to start singing with her church choir, although she was quiet and her voice had deepened from the radiation. As her voice slowly got back to normal, she would start to sing slightly higher voice parts. She also started piano lessons so that she could keep playing music even if she wouldn’t be able to sing anymore.
Her doctors started the process of taking her off the feeding tube in January. Dannye was very excited to finally get to eat normally again.
“I would have given my left arm for a glass of water in the middle of treatment. I remember you get to fill [a glass of water] up and you get to hold it and it gets your fingers wet. And then you put it all into the tube, and not a drop of it goes down the back of your throat where it feels like you’re on fire,” Dannye said.
To make sure that she could eat enough without the tube, they had her stop using it for a week or two, and if she was able to maintain her weight without it, they would take the feeding tube out. Dannye lost a little bit of weight in the time span, but it was small enough that they removed the tube anyways.
“[The] policy is to have the same surgeon place and remove the tube, apparently other surgeons are reluctant to work on someone else’s patient, but my surgeon wasn’t coming to the clinic anymore so it had to be someone else,” Dannye said. “They had to really search to find someone willing to do it and they said it was going to hurt more because of that … I had to wait 45 minutes for a doctor and when he walks in he says, ‘This will be painful and traumatic.’”
It wasn’t pleasant, but once her feeding tube was out and the hole had closed, Dannye was able to swim, run and sleep on her side or stomach again.
By February, Dannye was completely off the medications and she switched speech pathology for a voice teacher to help her voice.