Mother, wife, and caregiver; Caregiver to Husband, Stage III Throat Cancer Patient; Derry, NH
Kristi never considered herself a caregiver until her husband, Andy, was diagnosed with HPV-related head and neck cancer, when she was thrust into a world she wasn’t prepared for.
During her husband’s cancer journey, Kristi poured through research, spending countless hours on the Internet. She was surprised by the lack of information on HPV-related head and neck cancer. Beyond that, Kristi was disheartened with the type of guidance and support available to caregivers, beyond preparing for the end of life.
Due to his treatments and a limited diet, Andy lost more than 85 lbs. Early in the treatment, he was able to eat regularly, but as treatment progressed into the third week of radiation and chemotherapy, his appetite drastically lessened. He mustered all his strength to drink an 8 oz Carnation Instant Breakfast in the morning and an 8 oz Ensure for lunch and one for dinner, each taking him at least 2 hours to finish. Andy’s nutritionists encouraged protein powders and smoothies, but they burned and irritated his throat.
“I was running an apothecary out of my kitchen, brought on by the nausea of chemo and the third-degree burns on both sides of my husband’s neck from the aggressive radiation,” explained Kristi. “To keep track of all the medicines, I would line each one up on our counter with a clipboard under each that highlighted instructions on when to take it and to jot down the day and time he took it. It was the only way I could keep track of everything.”
Beyond the medications, there were constant trips to the treatment center for fluids. Usually the second day after chemotherapy, Andy would need additional fluids. Eventually, Andy’s chemo treatments had to be split in half, requiring him to go every week for 6 weeks versus every other week for 6 weeks. This also meant more trips to the treatment center for fluids.
What Andy withered away in weight, Kristi gained, due to stress and not taking care of herself. She was so disheartened that the following year, Kristi started running. At the age of 43, she completed her first half marathon. It was her way of getting back in shape and kicking the side effect cancer had on her.
The Masons had to forgo a summer vacation in 2016, and instead, Kristi took her two children on day trips, so the entire summer wasn’t consumed by cancer. She recalls feeling like that parent who was constantly under-prepared for the excursions, as it was all she could do to get out the door with the bare necessities.
Andy underwent 30 rounds of radiation, five days a week. In the early days of treatment, the effects of radiation were internal. The burning sensation was constantly affecting Andy’s will and desire to eat, as everything burned and was painful to swallow. As treatment progressed, the effects of radiation started to show externally starting with hair loss, followed by 1st-degree burns across both sides of Andy’s neck, and ultimately 3rd degree burns that left skin flakes everywhere. Kristi couldn’t fathom how uncomfortable this was for Andy, as it was painful to look at, let alone dress it for him with creams and bandages.
What kept the Masons going was knowing the high cure rate for this type of cancer. They wished the summer away and looked forward to the day Andy would ring the end-of-treatment bell. That day finally came on September 6, 2016, after eight long weeks. Andy shuffled along and “rang the bell” to signify his last treatment, a monumental moment, but not the end of his side effects — tiredness, weight loss, and throat pain, all followed.
The long-term effects of hearing loss, lack of saliva, and numbness in his feet (to name a few) stretched out for months post-treatment. Andy continues to experience longer-term effects like dry mouth and the new taste of familiar foods.
After going through this alongside her husband, Kristi strongly advocates for early detection, which she believes could have prevented Andy from such intensive treatments and the many long-lasting side effects. In the 2 years leading up to Andy’s diagnosis, he went to three different dentists. Kristi believes dentists can be a resource for early detection by conducting a thorough mouth, jaw, and throat examination upon every visit. “While the dentists couldn’t have prevented cancer, they possibly could have been a great resource for early detection. This could have saved my husband from going through such grueling treatments,” said Kristi.
Beyond early detection there is prevention. Kristi is a strong proponent of the HPV vaccine, for which she advocates, as it can eventually eradicate this cancer, sparing the next generation the same aggressive treatment and lasting side effects that Andy went through.
Lastly, Kristi believes there should be more awareness and resources about HPV head and neck cancer, including blogs, mainstream media, online resources, discussions, events, and support groups. No one should have to sleuth into the deepest depths of the Internet and feel alone as a caregiver, especially not with cancer as prevalent as HPV head and neck, which is why Kristi has joined the Head and Neck Cancer Alliance as an ambassador.