My Dad's Story

by Cathy Weeks

The Treatment: Chemotherapy and Radiation

Monday, November 27th, 1995: Dad entered the hospital for treatment. He was undergoing what was called the "Ann Arbor Protocol," which I was later to learn was the most harsh treatment protocol known. I'm not sure, but I believe it was developed by Dr. Orringer. It basically meant 21 days of continuous IV chemotherapy treatment and twice-daily radiation treatments (for a total of 30).

It went like this:

Days 1-4 Day 5 Days 6-16 Days 17-21

Cisplatin, 5FU and Vinblastine Cisplatin and 5FU 5FU Cisplatin, 5FU and Vinblastine

They had Dad hooked up and the Chemo started within a couple of hours of his entering the hospital. They had surgically implanted a catheter in a vein in his chest (much more convenient than a wrist, and I think they needed a bigger vein) for the chemo and other drugs to enter his bloodstream. Dad dragged around a "tree" on wheels that ALWAYS had a bunch of bags and tubes hanging from it. I found out later that the majority of what went into his body was water. The drugs are so poisonous that they would destroy his kidneys if they weren't continually flushed with water. As it was, he did sustain some kidney damage (as do 50% of all patients undergoing this protocal) anyway--he had to take extra potassium for a few months after treatment. But his kidneys healed up fine.

Funny, the hospitals record EVERYTHING. As a result of all the fluids (water, chemo drugs, anti-nauseants, etc), Dad had to urinate all the time, and of course they wrote down how much, how often, how much he ate, what he ate, if he had a BM, EVERYTHING. I guess they needed that data. Another annoying thing is that the alarm on Dad's IV pole was always going off. If it was low on batteries, if it was out of some drug, if a hose got kinked and, it seemed much of the time that it would go off for no reason. A nurse would always come in and fix it.

The first week wasn't bad. Dad was fairly healthy to start with; regular exercize, a well-balanced diet, didn't smoke or drink, etc. His good health made the entire treatment easier on him. He did better (ie. he was able to eat all the way through the 21 days) than 90% of the patients that go through this protocol, and his good health was a major contributing factor.

Another contributing factor was his attitude. He WAS GOING TO GET THROUGH THIS. He also renewed his faith in God, and was listening to guided imagery tapes to help his body fight the disease. Dad consciously fought the disease. And whenever he got depressed, he either requested or one of his doctors requested that Dad's counselor, who is trained in hypnosis and cancer treatment, come see him in the hospital (which he did). He made a HUGE difference, and really, really helped Dad maintain a positive attitude.

That's actually one of my favorite pieces of advice for people in Dad's situation. GET HELP!! Whether it be a clergyman/woman, a psychologist, or someone else. Someone who isn't a family member and thereby doesn't have to deal with their own worries about the situation is a better and clearer-headed listener than a loved one. I am NOT suggesting that family members be excluded. A counselor/psychologist is certainly not a replacement for a loved one and vice-versa.

I also did what I could to keep his spirits up. On his first day in the hospital, I brought him a computer to play with. He hadn't used the World Wide Web much, and I thought he'd enjoy surfing to combat boredom. I also attempted to give him some extra motivation to be stubborn and fight the disease. "Dad, you have to get through this. I expect you to walk me down the aisle when Chris and I get married. And you know what else? Chris and I plan on having children, and I want them to know their grandfather. And later on, Paul and Sean will have kids, and *they* will need a grandfather. And next summer you are taking Paul camping at the Boundary Waters. So you see, you really need to beat this disease." Dad smiled at me. "I will," he said.

While Dad was getting his continuous IV chemotherapy, Dad also got Radiation twice a day during the business week. He'd walk down to the radiation oncology offices, which were a surprisingly cheerful place, and get irradiated. Prior to treatment, the doctor had shaved Dad's chest, and a spot on his back. In each area a rectangle was painted on his skin, and were used to aim the radiation at the proper place. The machine used to irradiate cancer patients looked like a massive Hobart mixer laid over on its side. A technician told me it weighed over 20 tons. Dad would lay down on the table, which would then raise him up and over so that he was near the "Tuning fork" which would pivot and rotate such that one arm was over Dad, and the other under him. Simultaneously, one arm would deliver radiation to his front while the other did his back. A week and a half later, they painted new rectangles on each side of his rib cage, and adjusted the machine so that radiation would come through his sides, instead of front and back (It's to spread out the radiation so that it's less concentrated in the surrounding organs).

I visited Dad every day over my lunch hour during the week, and every day over the weekend. It was rough to say the least. As I mentioned earlier, the first week wasn't bad at all. Dad was in good spirits, and he hadn't yet experienced most of the side-effects of the treatment. The second week again wasn't as bad as any of us were expecting. I never saw Dad's hair fall out, but he never vomited, and didn't lose all that much weight. He was pale and tired, but mostly ok.

But it was during this second week that we got some rather unsettling news. While I was visiting, Dad's surgeon visited him for the first time, and told us a little about how he'd procede with the surgery. If at the time of surgery, Dad's lymph nodes were clean, and the cancer hadn't spread, then he had an 85% chance of surviving 2 years. If his lymph nodes were involved, but the cancer hasn't spread otherwise, then his chances dropped to 50%. And if the surgeon found that if the cancer had spread to outside the esophagus, then he'd close Dad up without doing the surgery at all. I had to go back to work soon after this, but I understand from my parents that the conversation was fairly brief.

Two days later, the head of the oncology group visited us. I again happened to be visiting. Dad's doctor, whom we didn't like very well (he was a competent doctor, but had a terrible bedside manner) was out of the office that day, and the head of his group came by to tell us the results of the ultrasounds, which would reveal whether or not Dad had lymph node involvement. The news was bad. The lymph node immediately adjacent to Dad's tumor was indeed involved. We had been hoping for that 85% chance, and Dad visibly sagged in disappointment. "I had hoped that wasn't the case," Dad told the doctor and I. "Well, I'm not great at reading ultrasounds. I can get the radiologist to interpret them for you, if you'd like," the doctor said. "No, that's not necessary," Dad replied.

It was also during this time that an amusing (in a dark sort of way) event happened: Some of Dad's chemo drugs spilled on the floor. Dad had gone to the bathroom, and rolled his IV pole over one of the dangling tubes, puncturing it. We called a nurse, who called an "environmental mess" team, who came in wearing full-face masks, gloves, plastic clothing, etc, to clean it up. Wow. I had had no idea that the stuff was so dangerous. The nurse told me that Dad's chemo drugs were not nearly as bad as one other very corrosive chemo drug that would actually burn if it got on the skin (!!). They merely try to minimize the exposure of hospital staff to these chemicals, since they are around them constantly.

The third week was a different story from the first two weeks. Dad clearly felt awful. He was weak, exhausted and ready to go home. The doctors said that Dad was doing so well, that they expected him to be home for Christmas. How could he be doing well, when he looked looked so wretched? Two things stick out in my memory during this week: He laughed at some ridiculous story that I had downloaded off the net, and the laughter was so unanticipated, especially with how awful he felt and how long since I'd seen him smile, that it brought tears to my eyes. And it was during this week that he spoke to his counselor about dying. All along, he had been so *sure* that he was going to make it. I hadn't realized how much Dad's certainty had given me hope, until he himself had doubts.

Dad was on painkillers by this point. He didn't have the mouthsores that many others do (some medicinal gargle prevented this), but his throat hurt terribly from the radiation, which I've been told is the part that tires people out the most. He also had hiccups almost constantly, and few of the home remedies that people told me about worked. The doctors tried different combinations of drugs, but to no effect. The hiccups, however, did stop when he was sleeping. Sleep is a better muscle relaxant than any drug, it seems. By the end of his final week, Dad was so weak, he could barely walk on his own.

Entry 5: The Second Interim (Post Chemo/Radiation, Pre-surgery).

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