1/3/2023 0 Comments Ringing the bellTomorrow, Dan will ring the bell. He rang the one on the chemo floor about two weeks ago, but the one he rings tomorrow marks the end of radiation. This one is significantly more important for him. I remember when we received the diagnosis, Metastatic Squamous Cell Carcinoma; large words with an ominous meaning, cancer The doctors assured us that this cancer is incredibly treatable and that his prognosis was really good. It was caught in time, and he was healthy overall, so things looked promising. I naively believed that it would be easy. We rushed headlong into the recommended course of action minus the feeding tube, Dan thought he could handle the pain with swallowing and didn’t believe he needed that option. A twenty-pound drop in weight changed his mind. Unfortunately, the feeding tube didn’t help as much as we thought. He was so weak from losing the initial weight that he didn’t feel like eating most days, so his calorie intake has continued to drop, and his energy is zero, but he hasn’t given up. The finish line is in sight. I have been there a few times when the bell has been rung by other people. I noticed that their smiles don’t always seem as big as one would think after completing cancer treatment. I know why now. For my husband, the pain makes smiling almost impossible. Ringing the bell will happen, but the excursion to the hospital for treatment will also leave him weak and tired. He will grimace through the symbolic ending to his treatment and return to our bedroom where he stayed for most of Christmas and New Year. The treatment may be over, but the pain is ever present. The cancer center that has become a part of our daily existence since November is beautifully decorated and staffed by the friendliest people. The receptionist recognizes my husband and checks him in when she sees him. The nurses in infusion are gracious and patient and always offer a sandwich or soda. I have had no complaints with his treatment since this journey began. I have had complaints about the treatment. The treatment may be routine for the ones who administer it, but it is disruptive for the ones who receive it. When he first started, I mistakenly thought I would be able to work on the computer while he received the needed meds through his IV on chemo day. It did not go as planned. Too many interruptions caused my work to suffer. Eventually, I adapted to the slower flow of life. We established a routine of sorts. When he first started, he was confident and bold walking to every appointment. He would grab the hand of whichever nurse was assigned to him that day and pray for them and whomever was close. He was adamant about getting the appropriate amount of calories each day. We went to the store so many times buying all sorts of food in the hopes that he could taste it. Imagine shopping with a stoned teenager that hadn’t eaten in three days, that’s what it was like. He would wander the aisles and drool over the pop tarts. I had to remind him that we were after nutritious foods that would help him. Soon, the most nutritious food available wasn’t the primary concern. We became more concerned with whatever he would eat that didn’t taste salty. We would treat ourselves to ice cream every Monday between chemo and radiation. Every morning he would ask for oatmeal or Cream of Wheat and would then add an enormous amount of brown sugar and syrup. As his taste buds slowly burned away during the radiation, the only thing he could taste was sweet. Suddenly, his obsession with food grew fiercer. He has always been a man who enjoyed his food. The desire to eat and savor his food didn’t diminish easily. The soreness of his throat increased as the flavors he once enjoyed turned bland. He craved savory and only tasted sweet. Soon even the sweet left and he was stuck with a salty taste that affected even the water he drank. Each food he gave up because of the taste made it a little harder to keep his weight up. Every time they irradiated his throat, he lost not just his sense of taste, but his pain increased. Soon, he faced an inability to taste and a horrible pain when he swallowed. The weight came off quickly after that. His mood changed from friendly to hangry. I was so happy when he agreed to get the feeding tube. I just didn’t realize what an adventure his feeding tube would be. He has long had an essential tremor where his hands shake noticeably. The cancer treatment has caused the small essential tremor to become a full hand quake. After he attempted to feed himself with his feeding tube a few times and ended up with more formula on him than in him, I took over. Don’t get me wrong, I had to learn through a trial by fire how to do it properly. I may have accidentally shot some formula onto the ceiling and across the room in an attempt to force it down the feeding tube a little faster. Dan said I needed to be more patient and just let gravity feed him. Patience has never been my virtue. I thought about how he had slowed down over the past two months. At first, he led the way to each appointment, now it takes all his strength to get out of the car and walk to the elevator. His pace has slowed to match that of the oncology ward. A place where no one seems rushed. The world rotates more slowly while the patients lay in recliners and snuggle under blankets. Even the expansive big screen that takes up one wall of the room is ignored. The constant barrage of Hallmark movies play to an audience of no one while people just rest and let medicines so potent that the nurse has to wear a special smock before she can administer them flow into their veins. When he started having angry outbursts after the steroids that he took to help with the nausea from the chemo, I wondered if this was really the best thing. He never wavered until the pain from the radiation made swallowing excruciating. One day I found him hunched in the bed holding his head. He said that each time he swallowed, it felt like he was drinking shards of broken glass. He said that the pain he felt after his shoulder surgeries was minor compared to this. Even the narcotics that the doctor prescribed did little to dull the searing pain he felt. “And it never goes away. It is always there.” I tried to continue to work, finish up school, and get my internship approved as the weeks wore on. I was feeling frazzled. My word for 2022 was Peace, and as the year ended, I felt very little peace in any part of my life. I prayed for peace and asked God to give me a break. Six funerals, an advisor that refused to respond to emails, a job that was in turmoil because of things out of my control, and a husband who had lost some hair, weight, and his spirit really started to weigh me down. Sometimes it felt like constant movement was the only way to keep from sinking. Then God said focus on what’s important. Once again, my priorities needed adjustment. Dan had to come first. I quit trying to do the things that work demanded of me and put in for my FMLA leave. Now I am a stay-at-home caregiver until he can feed himself. I trusted the internship would happen and realized that I have no control over that mess anyway. I found peace in focusing on my husband despite his cranky attitude. My husband rings the bell tomorrow. But the bell symbolizes more than the cessation of cancer treatments. It means the beginning of healing. He will regain his strength and taste and kindness. I will return to work less stressed and more resilient with a greater peace about what is and what is not in my control. The peace I prayed for in 2022 finally came to me as the year slowly ended. It nudged me gently into my word for 2023, Trust. I can’t have peace without trust and trust brings peace. The bell will ring in better things to come, and I am trusting in a new year that is far better than the old. Whitney L. MooreHalf assed writer for a full assed world
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AuthorI am a Christian, a wife, a mom, and a part-time basket case who wants to be a full time writer.
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