Here ya go, Nielsen. Count your blessings.
curly
Advanced Non-Small Cell Lung Cancer
Introduction by Steve Dunn
xxxx xxxxxxxwas an extraordinary person.
Although he died of his cancer in May 1997, he not only far outlived his prognosis, but he also inspired many people with his ability live fully even with such a serious disease, his sense of humor, and his willingness to help others despite his own situation. What follows is Chuck's story in his own words from May 1995 with an update in 1996.
DIAGNOSIS
I first suspected that something was wrong over a year ago. I could feel a swelling above the sternum. After an appointment with my local doctor I was referred to several doctors and ended up at in a surgeon's office at St. Thomas Hospital in Nashville. The surgeon was to see me at 1:00 PM after I had a CT Scan. I never met him because while I was waiting in his reception room a young nurse's aid came out and asked who was Mr. Crawford. She told me that I would not be seeing the surgeon today but he has made an appointment for me to see Dr. Murphy at 3:00 O'clock. "Who's Dr. Murphy?" I asked and she told me he was an oncologist. I didn't know what an oncologist was so I asked her what an oncologist does. She responded, "Oh, he treats cancer." "Cancer ... Cancer!" I shouted and jumped to my feet and started pacing around the reception room full of people. "Cancer!" I shouted. "You're telling me I've got Cancer.....Sara, What am I going to do?" The people in the reception room must have had strange reactions to this man running up and down the isle shouting, "Cancer...Cancer!" I'm sure this is not what the doctor intended for his patients waiting to see him.
The next two hours were the longest two hours I have ever spent. I was terrified of the thought that I had cancer. When I finally saw Dr. Murphy he was kind and patient. He carefully explained to me what he had seen in the CT scan and in his opinion the tumor was malignant. He said it had invaded the surrounding tissues and it would not do that if it was benign. He said he would need a biopsy to be sure. He suggested that we would probably start radiation treatments after the biopsy and the final diagnosis was made. He also suggested that I visit the Cancer Center on the lower level of the Hospital where the radiation treatment would be given. I was terrified. I looked at my wife, Sara, and said, "I want to go home, I don't want to visit the Cancer Center." Dr. Murphy was understanding and suggested to Sara that she take me home.
THREE BAD DAYS
My memory is missing for the next three days. Somewhere in there I had the biopsy done and I guess we visited the doctors office. I was scared stiff. I paced around the house all night and after a day or so became catatonic. Now I know what they mean by "Scared stiff." All I could do was sit in a recliner. I could hardly swallow and Sara worked to get nourishment in me. Our friend, Diane, was at the house with her father, Buddy within an hour of learning of my diagnosis. She brought a juicer and books on nutrition. Sara decided that she would concentrate on the nutrition factor. She studied the books and came up with a nutrition game plan. She fed me milk shakes with raw eggs and protein powder and who knows what else in them. The doctors told her that they had to snap me out of it or the catatonic state would lead to pneumonia and I could die from it. During the days I would escape from the house and wander around town or try to go to work. Friends and fellow workers would bring me home and Sara would acknowledge that I had escaped again. At night I would pace the floor. I remember wishing the sun would rise. I dreaded the night time. But, it only lasted for three days. The diagnosis was confirmed as stage IIIb squamous cell carcinoma of the lung and we were ready to start treatments. I began to see some daylight and the stiffness disappeared. The tumor was about two inches in diameter in the mediastinum and was protruding from above the sternum. It had invaded the lymphatic system and the sternum. It was inoperable.
TREATMENTS
I had radiation treatments five days a week for 6 weeks. I didn't have many side effects from radiation but this was mostly due to the job my wife, Sara, did in maintaining my nutrition. Most people lose 30 to 50 pounds during a radiation series. I gained nearly 20 pounds. The doctors and nurses would laugh as they weighed me. My spirits were picking up rapidly. I got to know the people at the cancer center and looked forward to going in for my treatments every day. I worked full time while taking treatments. I also attended aerobics classes three times a week and taught classes at the local community college
PROGNOSIS
When the radiation series was completed they sent me back to Dr. Murphy for consultation. I had never really asked or understood my prognosis. I asked Dr. Murphy what my chances were. He said, "Without further treatment you have no chance of survival and six to twelve months to live." "What about with additional treatment?" I asked feeling that additional treatment would make a great difference. He went on, "With additional treatment you can expect to live twelve to eighteen months ... I think you have about a year to live." he said. I paused for a moment. I didn't expect to hear that the time was so short. Then, I thought about Sara sitting there listening to this. "Are you OK, Sara," I asked. She responded that she was. I turned to Dr. Murphy. "I'm not afraid of dying," I said. He put his hand on my arm. "That's good," he said. As I sat there a feeling of peace came over me. It seemed strange even to me. The doctor had just told me that I had only a few months to live and I was at peace. Why didn't I panic?
BUYING SOME TIME...
Dr. Murphy told me that the chemo would be "hard". I asked what he meant by hard and he indicated that the side effects could be difficult to cope with. It wasn't too bad. I would take chemo on Fridays and would be sick on Saturdays, better on Sunday so that I could go to church and back to work on Mondays. I was a little puny on Mondays but I was back on the job and I really didn't miss much work. I had to spend the entire day at the doctor's office because I was taking cisplatin and it could damage the kidneys and liver. They spent the entire day flushing me out with IVs. I would push the iv stand around the doctors office and get involved in things. On one occasion., they were having a staff meeting and I wandered into the room. The explained that they were having a staff meeting. I asked if I could join them. They looked a little surprised and then said OK, I guess so. I learned a lot about how the office operated. Of course, they thought I was crazy but they put up with me. I was cleaning things up around the office one day and the receptionist said, "Hey, Mr. Crawford, when your done putting things away, how about going down stairs and washing my car? Chemo lasted about 5 months and then I was on my own. Dr. Murphy told me to come back in three months and sent me on my way. That was about a year ago and I have had good news on each visit to Dr. Murphy's office. On one of the visits, I made up my mind that I was going to read my entire file no matter what. I waited until the nurses were not watching and took the file from the rack in the hall outside my room. I was reading it when the nurse came in and told me she had been looking for the file. "Oh, I'm checking the rads," I said. She looked puzzled and left the room without the file. I finished reading the it and then put it back in the rack. I have been at peace since my diagnoses and my prognosis and I understand a lot of things that I would not understand if I had not read the file. Some parts of it were somewhat scary, but I wanted to know the whole story.
LIFE GOES ON
People think I have a weird sense of humor but I started finding humor in the things I was experiencing. I even found ways to make people laugh about my prognosis. The stories I told are all real life experiences like the time the hospice lady was looking for me at the bank. I had moved my office up to the second floor and when she inquired about me, they told her "he's moved upstairs." She paused and looked down. "Oh, I'm sorry," she said. "No, no" shouted Denise, "he's OK, he just moved his office to the second floor. I started giving humorous and spiritual talks to local church and civic groups. People didn't know what to make of me at first. Here was this guy with a terminal illness telling jokes. Well, the doctor still says I have a poor prognosis but I am at peace, working every day, going to aerobics, feeling good, in good spirits and enjoying life.
... UPDATE ...
NOVEMBER, 1996
Well.......I ain't dead yet!!!!!
It's been almost three years since I was diagnosed with lung cancer and I'm doing fine. The two tumors in my lungs and sternum are gone. The cancer that had spread to the lymph glands has not metastasized and there is no evidence of cancer in me. I'm in full remission with no symptoms, no treatments and no medication. I'm working full time at a bank, teaching at the local community college, active in several civic and church organizations and go to aerobics classes three times a week. My prognosis is still not good and I'm prepared to accept whatever comes next. I just live one day at a time and am thankful for each day that I have with my family.
