"I feel like the man in Franz Kafka's 'Metamorphosis'." Clarksburg, NJ

As summer turned into fall in 1999, 68-year-old John Macron and Betty, his wife of 44 years, embraced a period of transition. Seventeen years ago, the Macrons had moved from Brooklyn to New Jersey, and now they were planning another move, to rural Pennsylvania. They would have their New Jersey home sold by the next summer, and John would move his construction business to that area, building affordable housing for low-income families. A happy, sociable couple whose lives centered around their four children, a throng of grandchildren and large parties thrown at their home for family and friends, they planned a magnificent home which would be even better for entertaining.

Looking back to that time, the Macrons know this was the high tide point of their lives together.

A big, burly man who had enjoyed such excellent health that he did not have a family physician, John started feeling run-down, and feverish.

On October 10, 1999, John was admitted emergently with complaints of high fever and shortness of breath to Center State Hospital in Freehold, New Jersey. These symptoms had appeared a day before admission. John experienced pain upon inspiration. He remained at the hospital for ten days. Chest films were taken. During his hospitalization, John's doctors initially attempted a thoracentesis in his room without success, but with a great deal of pain. He was taken to an operating room, where an ultrasound-guided thoracentesis via the back produced 600 ccs of bloody fluid. Cytological tests performed on the fluid were non-diagnostic.

The thoracentesis provided immediate therapeutic results. As John puts it, "I went home feeling distinctly better." He could walk a quarter mile along the beach. He could climb the stairs in his home. Four or five weeks later, John saw a pulmonologist, Dr. Frank Coppolino, in Monmouth County, New Jersey, for a pulmonary function test. John did his best on the breathing test, and his symptoms worsened thereafter. He could not climb the stairs or walk any great distance. He waited two months for his condition to improve, but it did not get better.

In March, he called Dr. Coppolino, who directed John to get a chest film taken. John had the chest films done at Center State. The same day, Dr. Coppolino called and told him to check into the hospital immediately. Dr. Coppolino performed a repeat thoracentesis at Center State, removing 600 ccs of normal, amber-colored fluid. Cytological tests on the fluid were non-diagnostic. Dr. Coppolino next performed a bronchoscopy. He could discern nothing abnormal, and did not take any biopsies. John had no fever, but his breathing remained restricted. On discharge, John was referred to doctors in New Brunswick for a video-assisted thoracoscopy (VAT). John scheduled, then canceled the appointment with the New Brunswick group; he wanted to get a second opinion before undergoing this procedure.

John sought the second opinion at the Mayo Clinic in Scottsdale, Arizona in April. After conducting a battery of tests and review of the films from Center State and CT scans taken at Mayo, the Mayo physicians arrived at a working differential diagnosis of recurring infection, cancer or mesothelioma. They recommended that John undergo a VAT, and offered to perform the procedure in Scottsdale. John wanted to be closer to home for such a serious procedure, and returned to New Jersey.

On May 16, 2000, Dr. Whidman, a pulmonologist, and Dr. Cavalcalli performed the VAT at St. Peter's Hospital in New Brunswick, New Jersey. John's concerns about the seriousness of the procedure were fully realized. Probably as a result of a reaction to anesthesia, John's heart stopped beating on the operating table, and he had to be resuscitated.

During the procedure, John's surgeons made several incisions on the right side, well beneath the armpit. John's right lung had collapsed. They did not insufflate talc because, as John puts it, "There was too much scar tissue."

Frozen section analysis performed intraoperatively yielded a preliminary diagnosis of malignant mesothelioma of the pleura. Dr. Whidman advised the Macrons of his opinion that John was suffering from malignant mesothelioma the same day. The diagnosis was confirmed through traditional staining techniques by St. Peter's pathology department three days later.

Dr. Whidman told the Macrons to consult with an oncologist. The Macrons' children surfed the Internet and looked into gene therapy. On May 19, the Macrons consulted with Dr. Larry Kaiser at the University of Pennsylvania. Dr. Kaiser, a member of the Science Advisory Board of the Mesothelioma Applied Research Foundation (MARF), told John to take a month to recuperate from the VAT and consider five treatment options: (1) extra-pleural pneumonectomy (EPP); (2) photodynamic therapy; (3) gene therapy; (4) radiation and chemotherapy; and (5) watchful waiting. With regards to the gene therapy, Dr. Kaiser advised the Macrons that the University of Pennsylvania was not offering gene therapy at the time, and he would have to look elsewhere for that treatment.

John underwent a stress test to determine his suitability for surgery, and there was "no problem" -- at least with regards to his body's ability to withstand major surgery.

The problem was John's assessment of the pros and cons of extrapleural pneumonectomy. The more he read about this radical surgery, the more convinced he became that surgery was not worth it. He understood that he would be cut open and carved up, with a lengthy recuperation period, followed by chemotherapy and radiation therapy, with their attendant side-effects of pain and nausea. His near-death experience during the less invasive VAT procedure also weighed on his mind.

John had learned through the Internet of Alimta, an experimental anti-cancer drug known as a multi-targeted antifolate (MTA). Alimta's manufacturer, Eli Lilly, was (and still is) conducting phase III trials throughout the country for this promising chemotherapy for mesothelioma. However, the trials were "blind", meaning that patients would not know whether or not they were receiving Alimta, and only half would get the experimental drug.

After hours and hours of working the phones and the Internet, the Macrons found that the San Antonio Cancer Therapy and Research Center (SACTRC) was offering an Alimta only trial. (The trials offered at SATRC may be accessed at http://www.ctrc.saci.org/drug.htm). John and his wife Betty flew from New Jersey to Texas for a three week stay. John reports that administration of the Alimta itself was painless, but the long time spent away from home, the repetitive withdrawals of blood for testing, and, undoubtedly, the blistering Texas heat wore him down. He was relieved when the time came to return to New Jersey.

Before leaving, John understood that he would have to return to Texas on October 5 for a "GFR" blood analysis at the V.A. Hospital in San Antonio, and for a repeat CT scan to monitor his tumor. His doctors at SACTRC told him that if the CT scan detected any tumor growth at all, he would be immediately dropped from the Alimta trial, no if's, and's or but's. Eli Lilly reportedly discontinues patients not receiving a "clear benefit" from Alimta because of "acquired drug resistance", that is, the resistance which cancer cells can develop over time to chemotherapy.

There were days when John sensed increased pressure in his chest cavity, and sensed that his tumor was growing. An outwardly stoic type, John held in his torment as October 5 approached. A few days before the moment of truth, John sadly remarks, "You are utterly powerless. They decide your fate with a thumbs up or thumbs down, like Roman emperors."

October 5 came, and John called with the news: he was still in!

Presently, John is somewhat short of breath and weak. He has lost perhaps 30 to 40 pounds since October. He stands 6'2" tall, and weighed approximately 230 pounds before he fell ill. The tumor is "all over" the right lung, and may have invaded the musculo-skeletal tissue and bone, with its attendant network of nerves.

A well-read, intelligent man, John does not show self-pity, and he is not maudlin about his situation. He wants to live, desperately, but he cannot shake the feeling that one day he woke up "different" from the rest of humanity, because of his mortal disease. Others make plans for the future, but he can only live day to day. John smiles and says, "I feel like the man in Franz Kafka's "Metamorphosis", who wakes up one day and he's a roach."

Now 69 years old, John Macron wants to live, to continue to feel the love of his family, which has enveloped him in this time of crisis. We wish the Macrons the very best in their struggle with mesothelioma, and will keep you posted.