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"I Hate This Disease"

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I lost my father on October 21, 1997, after a twenty month battle with malignant mesothelioma. My dad was 67 years old.

In April, 1996, he began to experience fatigue and a sharp pain in the region of his gall bladder. After a barrage of tests, an abdominal aortic aneurysm (AAA) was discovered and was thought to be the cause of his fatigue and pain. In March, 1997, he underwent surgery to repair his AAA. The recuperation time for this surgery was supposed to be 8 to 12 weeks. When, after four months, he had not yet recovered, he underwent more tests.

After meeting with his cardiologist, Doctor Pitts, a chest x-ray was ordered. The x-ray revealed fluid on his lung. Upon removal of more than two liters of fluid, a mass was discovered and a biopsy was scheduled. Four Doctors at Methodist hospital reviewed the results of the biopsy. Two felt that my father had asbestosis and two felt that it was mesothelioma. The biopsy results were sent to the National Cancer Institute in Boston, MA. The doctors there felt that the mass was malignant mesothelioma.

We were told that due to my dad's age and the extent of his physical deterioration any of the treatment possibilities (chemo, radiation, surgery) would be worse than the disease itself and did not have much of a chance at success. He weighed approximately 205 pounds at the time of his AAA surgery. Four months later, he weight 155 pounds and was a mere skeleton of the man I once new. He became so weak that simple tasks like getting ready in the morning or walking across a room exhausted him. He really only found comfort in sitting in a reclining chair. We sat by and watched him die slowly.

At the advice of dad's oncologist, Dr. Butler, we contacted Dr. Dale Gauyer who specializes in holistic medicine. Specifically, he gives massive doses of vitamin and trace minerals via I.V. in an effort to boost the body's natural cancer-fighting mechanisms. This treatment gave dad a little more energy but ultimately was not successful. My dad became very depressed. In 27 years I had never seen him cry but he began to sob regularly. The strongest man I had ever known was being broken right in front of my eyes and I could do nothing.

The doctor then prescribed Ativan to help the depression and anxiety. You see dad had seen several people die from lung cancer and emphysema and the thought of the ordeal that lay ahead caused him great fear. When his weight dropped to around 150 pounds we sought assistance to help him regain his appetite. He had to take a steroid called Megace to stimulate his appetite. At the same time he was prescribed the drug Darvocet to control the pain which seemed to manifest in his shoulder, neck, and back.

As the days grew into weeks we noticed that when he breathed, the side of his back with the cancer did not even move. His oncologist informed us that the mesothelioma was crushing his lung and would ultimately do the same to his heart.

Eventually, the doctors prescribed liquid morphine to control the pain. One afternoon the pain got so bad that no matter how much morphine my dad was given it couldn't help. My mom called an ambulance and he was taken to St. Vincent's hospital (wonderful place). They determined that he was suffering from pericarditis (inflammation of the lining around the heart) and that fluid was steadily building up as a result of the cancer. They said the pain could be likened to a heart attack.

In mid October he was admitted into St. Vincent's Hospice. The doctor told us that he did not expect dad to live two months. Dad began to experience hallucinations and severe paranoia as a result of the morphine. He became very suspicious and angry at us all. This was almost the hardest part.

They changed his pain medication to Dilaudid, a morphine-like drug. It didn't induce as much of a paranoid state as morphine but it made it hard for dad to talk and carry on much of a conversation. For six weeks he could ingest nothing but apple juice and milk. My mother moved into the hospice with him and lived there for six weeks. She worked occasionally but for the most part she just stayed with him. She learned how to care for him the way the nurses and volunteers did. According to the workers at the hospice, no one had ever moved in to take care of a relative for this amount of time.

On October 20, it became very difficult to administer the pain medication by shot so they hooked my dad up to a battery-powered computerized system which automatically administered pain medication. Within hours my father became unresponsive to us. My mother called me at work and I gathered the immediate family at the hospice.

In the end, seven of us sat around his bedside for 15 hours while he died. He gasped these horrible breaths and it appeared as if he was struggling to breathe but the nurses assured us that the medication was comforting him. When the end came, I held one hand, his older sister the other, and my mother cradled his head. As he slipped away I sat there helpless and angered by my helplessness.

My dad was a wonderful person. My dad's older sister met an American soldier that was stationed in England during World War II. They were soon married. The soldier was from Anderson, IN (a suburb of Indianapolis). After the war, his sister and her husband moved back to Indianapolis. In 1955, my father came to America via ship through New York. He had less than $100 and a suitcase that contained everything he owned in the world. His intention was to visit his sister in Indiana and then move on to Canada to accept a job as a watchmaker. After securing a good job in Indianapolis, he decided to stay.

Over the next 42 years, he climbed his way into executive management with a fortune 500 company, married, and had one child. Working in human resources, he touched the lives of thousands over the years. In addition, he was the most honorable and loyal man I have ever known. If it was the right thing to do -- he did it, regardless of the cost. If you were his friend -- you remained his friend, regardless of the cost.

His funeral was attended by over 250 people. Every person that talked to my mom and me told us of their respect for him and how much they admired his character and loyalty. Those in attendance at the funeral included executives from all over the country representing several companies. I can honestly say that I did not know how respected my dad was and how many friends he had because when he was alive he never bragged. I apologize if it seems like I am doing it now.

At 67, my dad was too young to die and I still reflect in disbelief that he is gone. The greeting on my parents answering machine still has his voice and I call it often. My mother is only 53. She was married to my dad for over 32 years. Her grief is painful to watch. My dad was a great man. Mesothelioma stole his smile, his joyful attitude, his independence, his health, and ultimately his life. It took everything he had and then it took him from us.

As unreasonable as this sounds, I hate this disease. It is a cruel death which leaves family members shattered in its wake.

Len Smith
December 4, 1997