Part 8: 'Take a number please'
We were given another appointment set for three weeks later. What is the deal, I thought. Here we have this rare fast growing cancer eating away at my husband day by day, yet no one besides us gave it the seriousness it demanded. “Why do we have to wait that long”, I asked Cherry, Dr. Chen’s nurse. “That is the first available appointment that the surgeon has for this type of procedure”, she explained. Surely there must someone else in the Utah Valley that could schedule him for this supposed simple procedure sooner. than what we were being told. I asked her a list of questions before she informed me that only certain surgeons and sometimes radiologist were allowed to insert a Hickman due to its potential complications and precision needed. “Okay then, I want to make the first appointment we can schedule with the Radiologist”, I insisted.
She was unable to give me anything on his schedule earlier than the following 2 weeks. This part of the cancer journey was by far the most frustrating. For all the modern medicine out in the world for rare diseases like cancer it was literally impossible to get them scheduled in a timely manner. The excuses to the delays were as ridiculous as, ‘your insurance still hasn’t sent us approval for this test/procedure so we either need cash in full beforehand, or to wait for the insurance to response’, or ‘the few amount of doctors we have on staff who can get you what you need are all booked up and you’ll have to wait your turn’, and ‘well we know it’s your week to get your chemo but we ran out of beds so please call back each day to see when one opens up and we will try to reserve it for you.’
How is anyone suppose to get better or have a fighting chance if the tools they need to overcome the disease are kept from them?
I knew that even from the beginning I was going to have to get strong, and demand the attention we needed.
Otherwise suffer the fate of negligence that would affect my children and me the most.
Otherwise suffer the fate of negligence that would affect my children and me the most.
“Please give me the Radiologist direct number”, I politely asked. I called and explained the urgency of getting the Hickman for Dan. I even asked to be placed on a cancellation list. We only waited a couple days before we were fit into the schedule. Dan would get his Hickman and be eligible to get his first chemo in less than a week.
The procedure itself ran a high risk of complications; therefore Dan would be kept awake during the surgery preventing mistakes from going unnoticed. My father in law had come into town just for the surgery date. Historically in our marriage my in-laws created friction between Dan and I. In 5 years the visits were few and far between, void of peace and good memories. No woman that had married into their family seemed to be ‘good enough for their four sons’ and they had no problem showing their disappointment, leaving my sister-in-laws and I wagering whom they hated most. I was glad to finally see them support us in something since we had gotten married. I didn’t know it at the time, but this would be the beginning of the loyalties between husband and wife coming to a close.
The morning of the Hickman surgery was very stressful. My father in law was on his way up to our house, and both kids were either crying for attention or needing something from me. Dan was on edge and moodier than the kids. I just knew we had to get through the day. The stress in our home was mounting, and headed toward explosive disaster. Right before we were to pack up the car and head to the hospital an insignificant argument broke out between us. The argument was clearly a distraction created in lieu of dreading going to the hospital again. He stormed out of the house. I was baffled at where he thought he was going an hour and half before our appointment. I packed up our small children, and a bag of books and snacks to keep them busy. I was now playing mommy to three kids instead of just two. I would have to track him down to get him to the hospital. I found him stomping down the main road of our neighborhood with a scowl on his face. If things in our life weren’t so serious at the time I might have laughed at his child-like behavior. I slowed the car and rolled down the window.
“Where are you going?, are you walking all the way to the hospital?”, I said half joking, half mad.
In the last few days I had started to feel him resist the inevitable course we would need to be on to save his life. His only response was, “Leave me alone!” I continued inching the car along the sidewalk waiting for Dan to realize I would follow him at this pace all the way to California if I had to.
“Where are you going?, are you walking all the way to the hospital?”, I said half joking, half mad.
In the last few days I had started to feel him resist the inevitable course we would need to be on to save his life. His only response was, “Leave me alone!” I continued inching the car along the sidewalk waiting for Dan to realize I would follow him at this pace all the way to California if I had to.
“Well if you were going to run away from home then it was a really bad idea not to pack a lunch…..you might get hungry later” I was trying to use humor to lure an adult child throwing a tantrum into reason and logic so he'd let me take him the hospital. He wouldn’t let up, and my efforts seemed to give him reason to point his anger toward me even further. I would become the blame for my husband getting cancer from that day forward, my in-laws in full support of this ‘theory’. I felt like enemy #1. Dan soon turned around and started storming back to the house. He dialed someone on his phone and disappeared around the corner of our street. I stopped the car for just a minute on the side of the road. I was so tired, and my mind full of thought. I pulled the car in the garage and went in to find an empty house. Out the front door Dan was sitting on the porch. Before I had a chance to go out and try to smooth things over I saw my father in laws white van pull up through the window and Dan jump in the car. Was this a jailbreak, aided and abeded by his own father? I dialed his mobile number. His father took the phone and hastily told me that he would take his son to the hospital, I wasn’t invited to come and then hung up the phone.
In tears I called my own mother for support and asked her to come be with me. She arrived at my house and took the boys and I up to the hospital. I found the Radiology department while my mother took my kids for a walk around the hospital grounds. I saw my husband sitting in the waiting room. His father was sitting next to him on one side and I took the seat on the other. The waiting room was packed full, some dressed and waiting, and others were patients in hospital gowns. I couldn’t grasp why Dan’s father would encourage his crazy behavior. I refused to let dwelling on it take priority over an appointment that was not only scary to Dan, but that was just as scary to me. When the nurse called Dan’s name, he stood up. I could see his father start to push away from his chair. I quickly jumped up and ran over to Dan’s side. I knew he could only have one person go back with him to the surgery room. I grabbed his arm and followed him down the hall. Anxiety had calmed his anger and he turned to me for comfort. “I’m really nervous”, he said. I listened to him tell me he didn’t want to be awake for the surgery. They would be making an incision in his neck and jamming a tube down a tunnel to his heart, hoping to not get stuck or damage other organs on the way down. The tube would be routed through the right atrium of his heart and come out of his chest fastened with two external ports. Such a dangerous procedure would make anyone nervous.
He lay down on the table. I kissed him and told him it would be alright before he was wheeled away. I had several hours of sitting in the same room with a man who had earlier invalidated me as partner to my husband, in life as well as in this cancer journey.
In tears I called my own mother for support and asked her to come be with me. She arrived at my house and took the boys and I up to the hospital. I found the Radiology department while my mother took my kids for a walk around the hospital grounds. I saw my husband sitting in the waiting room. His father was sitting next to him on one side and I took the seat on the other. The waiting room was packed full, some dressed and waiting, and others were patients in hospital gowns. I couldn’t grasp why Dan’s father would encourage his crazy behavior. I refused to let dwelling on it take priority over an appointment that was not only scary to Dan, but that was just as scary to me. When the nurse called Dan’s name, he stood up. I could see his father start to push away from his chair. I quickly jumped up and ran over to Dan’s side. I knew he could only have one person go back with him to the surgery room. I grabbed his arm and followed him down the hall. Anxiety had calmed his anger and he turned to me for comfort. “I’m really nervous”, he said. I listened to him tell me he didn’t want to be awake for the surgery. They would be making an incision in his neck and jamming a tube down a tunnel to his heart, hoping to not get stuck or damage other organs on the way down. The tube would be routed through the right atrium of his heart and come out of his chest fastened with two external ports. Such a dangerous procedure would make anyone nervous.
He lay down on the table. I kissed him and told him it would be alright before he was wheeled away. I had several hours of sitting in the same room with a man who had earlier invalidated me as partner to my husband, in life as well as in this cancer journey.
I watched all the sick people sitting around me. It was really a horrible sight. A vision of what our own future would hold. People sick, worn down, and depressed by the disappointing lots they drew in this life.
After what had happened I loathed my father in law, and decided to move to a seat as far away as possible from him. The nurse soon came in and called Dan’s name to see who was there to claim him. I again jumped up quickly, holding the bag provided by the hospital to put Dan’s street clothes in.
(Dan's Hickman port)
When I went in the room where Dan was recovering, I immediately noticed the thick stitch line on his neck. He could almost be mistaken for a bullet wound victim. He was permitted to sleep right after the surgery for a short time to help him relax and accept the new addition to his body. I sat by him and held his hand for a while, waiting for him to wake up. I wasn’t eager to get back to Dan’s father, and the drama that was always associated with him.
I didn’t need more stress in my life. I needed to feel some of the burdens I was carrying lifted.
I didn’t need more stress in my life. I needed to feel some of the burdens I was carrying lifted.
He started to stir a little and I knew he would be awake soon. I mentally prepared myself to be positive for him. It wouldn’t be that different from a child who falls down and looks to him mom’s reaction to know how he himself should react. His hand reached over his chest and he examined the change by touch. He finally opened his eyes and looked down. The nurse removed the bandage so I could help him get dressed. Long tubes, exposed, hung down his chest from his insides out. It wasn’t natural, and gave me a desire to tug on them until they came out. The instructions were that it could never get wet, or infection would surely enter, and go directly to his heart. A cleaning of tubes would be required twice a day with a substance called Hepburn, which would be done by me. I would learn how to use syringes and medical devices like they were common household appliances.
Dan rode home with me in our car and with our kids, instead of with his Father. I felt united again after a day of chaos between us. The incident was never spoken about between Dan and I, or our parents.
The damage being done to our relationship and us would be irreversible and wreak havoc on my emotions permanently.
He immediately went to bed when we got home, while I continued tasks like feeding the kids and starting laundry. I was tired and wished I could go lay down with my husband. Although I was still mad at him for how he had acted earlier, I wanted to pretend that the incident hadn’t happened and just utilize our time together the way we should have, making every moment count. I knew that what had happened today was just a taste of the awful things we had signed ourselves up for. There would be plenty of hard times at the hospital, which would surely mean hard times for us at home. I had to figure out a way to minimize those difficult times in an effort to keep our family together and our relationship alive. Little did I know the true effects the cancer would have in store for me and my family.
The damage being done to our relationship and us would be irreversible and wreak havoc on my emotions permanently.
He immediately went to bed when we got home, while I continued tasks like feeding the kids and starting laundry. I was tired and wished I could go lay down with my husband. Although I was still mad at him for how he had acted earlier, I wanted to pretend that the incident hadn’t happened and just utilize our time together the way we should have, making every moment count. I knew that what had happened today was just a taste of the awful things we had signed ourselves up for. There would be plenty of hard times at the hospital, which would surely mean hard times for us at home. I had to figure out a way to minimize those difficult times in an effort to keep our family together and our relationship alive. Little did I know the true effects the cancer would have in store for me and my family.
