Part 14: The Damage Is Done
Dan's stay at home was short lived as he acquired a fever, mouth blisters, and couldn’t stop vomiting the following week. Anything over 105 temperature and we were to rush to the emergency room. His fever at 108 had us worried. We drove to the closest hospital. Luckily when they knew we were getting our treatments from Huntsman they called over there to reserve a bed for him. No one could give him better care than a hospital designed especially for cancer patients dying from overdoses of chemotherapy.
Going back to the place you just left less than a week ago was hard to do. It was another routine of calling neighbors and friends to watch Cole on an emergency basis to spare him anxiety, Dan the pressure of being ‘daddy’, and me the freedom to chauffeur him around. The shock of how many people would say no because they needed to mow their lawn or it was just plain inconvenient to them was wearing off and it became frustrating. My mother who was an hour south of us and my aunt an hour north were the only babysitters we could ever find. The amount of driving I did between my home, the hospital 40 minutes away from my house and our distant ‘sitters’ was astronomical. I spent more time in my car with my thoughts than anyone dealing with what I was should have to do.
The nurses spent the rest of the day managing Dan’s fever. He was admitted to the hospital without a projected release time. ‘We will see how it goes’, is what we would always hear every time we were up there. It was like being in jail. You get arrested, put in a holding area, and are told to wait and see what happens next, or see what the judge will say, ‘yes you can go’, or ‘no, you will be staying here for awhile’.
His mouth was full of sores, making it hard for him to swallow or talk. He was also dehydrated and immediately hooked up to IV’s and bags of fluids. The sores in his mouth were diagnosed as thrush, a fungus in his mouth, common for chemo patients. He was administered IV antibiotics to clear it up. Although we weren’t at the hospital for a round of chemo he was suddenly hooked up to just as many bags as he was a week ago for his last treatment.
The fever didn’t come down enough to let him come home. He would be spending the night. I hated to leave the hospital without him. I wasn’t prepared for him to be kept overnight and had nothing packed for the baby or myself. While Dan sometimes pointed his anger for the situation toward me, I pointed mine toward the nurses and hospital for taking my husband away from me. Although absurd, my subconscious believed that they were giving Dan more reason to be dramatic than necessary, and catering to his every cough, whine, or look of discomfort. I was sure they were encouraging him to act sicker than he might actually be. The mind can be a dangerous place during the unknown times. I just wanted them to put a band-aid on him, pat him on the head, and send him home to be with his wife.
I was grateful for the offer and agreed to have them come up to visit us in the hospital. After the blessing and the two members of our church had left Dan began to improve. A few hours later he felt well enough to get up and stretch his legs on a walk down the corridor. Still attached to his bags of fluids he pulled the IV unit with him as we walked around. He joked about the awkwardness of having an added extension of himself but it was normal to see bald headed people toting around what looked like a giant coat hanger draped with medical tubes and fluid bags with them everywhere they went. I was glad the blessing had eased some of his earlier symptoms and I was hopeful he would get to come home soon.
Monday morning they did some blood work and by afternoon they released him to come home. I was relieved he was feeling better but on edge knowing we were scheduled to come back in two days for testing.
He had so many appointments scheduled for tests that it was hard to keep them straight. Just getting your chemo wasn’t enough when you have cancer. You have to have test to make sure it’s working and find out what other effects are going on in your body during the process.
The MRI was most important, as it would directly give us insight as to if the chemo was working or not. Dan’s rare cancer left doctors unable to pinpoint what would surely work and what wouldn’t. His blend of poison was just a guessing game. A battery of tests to see what the chemo was doing to his body was next. It was a routine of poking and prodding to see what hurts and what doesn’t. Dan’s heart was healthy so far but his hearing and nervous system were less fortunate. Hearing damage had set in, leaving Dan with permanent loss and a ringing that had began to taunt him when it was too quiet at night. Numbness on one side of his body and in his back when he lay down was another side effect of the life saving drug. He had nervous system damage.
With the possibility of the chemo not working and us not finding out those results for 4 more days depression from the bad news began to set in. The damage was already done and even if the chemo wasn’t working there was no going back and starting over again.
We would wait until the following Monday to hear from the ‘Tumor Board’ and the reviews on the MRI. The drugs had to be working in order to continue chemo and have the best possible outcome of the amputation that was inevitable.
Sunday was Father’s Day. I made Dan breakfast in bed. He didn’t feel well enough to eat, but let us sit on the bed with him and listen to him read our Father’s Day cards. We went to church as a family. Dan kept his distance from everyone trying to avoid infection. He was like a new baby, with an immune system fragile to everything, unable to fight off the common cold if he were to catch it. Our bishop announced over the pulpit for people to not touch him or come close if they were sick. I was surprised Huntsman didn’t prescribe a human bubble for him to be placed in while when we were out in public.
We headed to Springville to get away for the night. Dan finally ate some food from the Father’s Day dinner my parents had prepared. He had been losing weight so rapidly that any amount of food he ate would be important to keep him healthy enough to stay on his chemo schedule.
The drive home we talked about the MRI and whether we thought the news would be good or bad. A network of doctors from the hospital and specialist around the country would hold a meeting Monday morning called ‘The Tumor Board’ where suggestions and brainstorming would take place before giving us the word on what was the next recommended step. The hospital was conducting a case study on Dan and it was pertinent to future science on his cancer that the smartest brains were contributing to the ongoing diagnosis and course of treatment.
“I don’t think it’s working”, Dan said as he looked down at his hand. “Why would you say that?” I responded in shock. It had better be working for all the trouble we were going through. “I don’t know, I just feel a bump in my hand, I think it’s the tumor getting bigger, “he said passively, as if he had been feeling this way for a while without bothering to tell me.
My mind reeled in what we would hear the following day. I felt nervous as I try to sleep that night. It would be hard to accept that we had already gone through so much just to find out that it was for nothing other than to find out the treatment wasn’t working.
