Writer Beats Back MM

Bill Tice, an incomplete quadriplegic and writer, was previously diagnosed with malignant mesothelioma at Alton-Ochsner Hospital in New Orleans in the winter of 1992-93. He was diagnosed after an exploratory laporotomy, which revealed the presence of a "huge" tumor in the omentum. His doctors sewed him back up, sent him home to hospice care, and told him he had ten days to live. The surgical wound was infected, and left "a gaping hole." He was prescribed Cipro for the infection, and, in defiance of his doctor's morbid prediction, he gradually got well.

Bill Tice knows adversity. He knows what's it like to be a statistic. And he knows how to put himself in a position to beat the odds. He was involved in a 1968 automobile accident in which the spinal cord was damaged, but not completely severed. Bill has loss of muscle tone, balance, and coordination, but he is not paralyzed. He can stand. Had the accident occurred today, with prompt treatment he would have been left less disabled.

His disability has not embittered Bill; he faces his troubles with a sweet nature. Besides, who has time for bitterness when you are busy being a productive and decent citizen?

This is Bill Tice's incredible story.

In June 1999, because of his quadriplegia, Bill had to have a suprapubic catheter inserted. About a month later, in July, 1999, he developed a low grade fever, in the 99 to 100 degrees range. By August 25, 1999, he had developed a non-productive, hacking cough. He only had a cough when he had a fever, and the cough would go away if he laid down. The bouts of fever started getting worse. He also had pain in the upper right quadrant of his abdomen. He consulted with Dr. Armin, his family physician, who prescribed antibiotics for a possible respiratory infection and took a urine culture . The culture tested positive for a urinary tract infection, which was treated with Cipro.

By September, Bill was becoming anemic; his hemoglobin count was dropping. The fevers and cough persisted. He had no appetite, was starting to lose weight and was lethargic. He returned to Dr. Armin on September 10. Dr. Armin continued Bill on Cipro for ten more days, and started him on iron for his anemia. On September 17, Bill returned to Dr. Armin for a chest film, which was negative. Bill was also tested with negative result for tuberculosis. He still had fever. Dr. Armin started Bill on another antibiotic, Biaxin. On September 20, the fever broke only to resurface three days later.

On September 23, Bill was coughing, shaking, and having spasms. His nailbeds turned blue, and his temperature soared to 103 degrees. He was taken to the Emergency Room of Pershing Hospital in Brookfield, Missouri. A blood test revealed that his anemia had worsened.

On September 27, Bill was referred to the University of Missouri Hospital in Columbia for an infectious disease consult and CT scan. He was admitted September 28. His anemia was worse. The CT scan showed a small amount of ascites around the liver. Bill's doctors administered Prednisone, among other medications, which his girlfriend Sandy Tate believes caused the fever to temporarily abate. The attitude of the doctors was, "You don't have a fever, there must not be anything wrong with you." Bill was discharged on October 1 with a diagnosis of fever of unknown origin.

By the time of his discharge, his fever was already climbing back to 101.5. Sandy continued calling doctors. Bill's fever continued, and his coughing was growing worse. On October 6, he was readmitted to University Hospital. He underwent a battery of tests, including a Gallium scan and bone marrow biopsy. The Gallium scan was performed on October 15, and revealed inflammation around the liver, which was diagnosed as a subphrenic abscess. Bill's physicians attempted a CT-guided aspiration, but could not get any fluid. He was discharged from the hospital on October 18 with intravenous antibiotics.

From October 18 through 30, Bill remained at home on the i.v. antibiotics. His condition improved somewhat, but his fevers continued, although controlled with ibuprofen. On November 4, Bill went off ibuprofen "to see what would happen", and his fever shot back up.

On November 18, Bill was re-admitted to University Hospital for purposes of a liver biopsy to test for granulomatous hepatitis. A liver biopsy can cause blood loss, so he had a blood transfusion before the procedure. He was running a temperature of 103 degrees. He had pain in the right upper quadrant of his abdomen. The liver biopsy showed non-specific, reactive hepatitis.

Dissatisfied with his treatment at University Hospital, Bill traveled to Northwestern (University) Memorial Hospital in Chicago on December 13, 1999 and consulted with an infectious disease physician. On December 15, Bill underwent a fine needle biopsy. The working diagnosis was a subphrenic abscess. His doctors again attempted to drain fluid for a culture, but were unable to get any fluid. Finally, his doctors used an eighteen-gauge needle to perform a fine needle aspiration at the area around the liver. Tissue was biopsied and submitted for pathological testing.

On December 17, Bill was diagnosed with inoperable hepatocellular carcinoma (liver cancer). On December 20, Bill's doctors advised him that there was a misdiagnosis, and they weren't sure what the proper diagnosis was. Northwestern sent for the slides from Ochsner for comparison purposes. The slides looked the same under the microscope. However, the doctors at Northwestern expressed skepticism that he was previously correctly diagnosed with mesothelioma, given his prior complete recovery with antibiotics and disease-free state for seven years. He was discharged on Christmas Eve and told to get a second opinion.

Bill consulted with Ellis Fischel Hospital in Columbia, Missouri on February 23, 2000. Columbia, Missouri. He was admitted to the hospital on March 1. On March 9, Dr. Boris Kuvshinoff performed an exploratory laparoscopy with tissue biopsy. Pathological testing on the biopsied material resulted in a diagnosis of malignant mesothelioma of the peritoneum, epitheliod type. The tumor sits beneath the right diaphragm, covering the top and back of the liver, and extends into the area below the left diaphragm, in the left upper abdomen.

Dr. Kuvshinoff consulted with Dr. Paul Sugarbaker in Washington, D.C regarding cytoreduction with perfusion chemotherapy. Even though Dr. Kuvshinoff had never performed this procedure before, he told Bill that he would obtain the necessary equipment for the cytoreduction and perfusion. However, Bill was aware that there was a possibility that the tumor had invaded the diaphragm, and that all or a portion of the diaphragm might have to be removed. Because of his quadriplegia, Bill especially needs his diaphragm to breathe. Bill declined surgery with Dr. Kuvshinoff.

Bill forwarded his records to Dr. Paul Sugarbaker, who declined. His girlfriend Sandy writes of the agony they experienced with the decision to decline surgery by Dr. Kuvshinoff, and with Dr. Sugarbaker's refusal to treat Bill:

Bill is not a candidate for the surgical procedure developed by Dr. Paul Sugarbaker, as Bill is an incomplete quadriplegic and uses his diaphragm to breathe. However, we had a surgeon here in Missouri who wanted to do the procedure on Bill, and planned to include a thoracoscopy to determine the extent of tumor above the diaphragm. He had never done the procedure before. After the consult with the thoracic surgeon who would also be involved, it was clear that Bill might come out of the surgery without most of his liver and part of his lungs and diaphragm. We were told it was our only hope.

We agonized over the decision to proceed. We prayed for guidance. We asked every doctor we knew and respected, as well as the anesthesiologist present during Bill's laparoscopy on March 9. We feared Bill would not survive the procedure. We knew if he did, he would probably be ventilator dependent the rest of his life. As things are now, we are also dealing with the illness of my mother, which began as pneumonia in December. She is in a hospital in Kansas City now attempting to wean from an ventilator. She has severe lung disease. She lived for years with my dad, a builder using products containing asbestos. Connection? Maybe. Bill sees her struggle on that ventilator. He does not want to live that way. We sent the CT scans to Dr. Sugarbaker himself. He refused to do the procedure on Bill. He is the expert. We decided not to let the Missouri surgeon learn on Bill. We were devastated, knowing he might have been our last hope.

It was March 29 when we learned Dr. Sugarbaker would not do the procedure. I helped Bill to bed for a nap. I sat at the kitchen table. I was furious, heartbroken, confused, my faith was shaken to the core. I try to do the worrying, the research. Bill is too weak, too emotionally and physically fragile. When I can get nothing done, I feel I have let Bill down. I told God that day, there at the table, to please, PLEASE, let me know what to do. I opened my eyes. There on the table was a web page I had printed with a list of mesothelioma specialists. I checked U.S. News and World Report for the ratings. M. D. Anderson was #2 for cancer centers. I called Dr. Verschraegen. Again by the grace of God, I got through and told her Bill's story. We were sitting in her office less than a week later.

Dr. Verschraegen, a member of the Science Advisory Board of the Mesothelioma Applied Research Foundation (MARF), was able to meet with Bill on April 4. She has prescribed Megace, megestrol acetate, which is normally used to treat cachexia. According to Sandy, in a 1985 study of 23 patients, one with mesothelioma had a complete response, survived 96 months and was disease free after taking high doses of megestrol acetate. Megace is not considered to be a cancer cure. Bill is doing a two month trial. He takes Megace in liquid form, once a day. Bill currently weighs 159 pounds. He weighed 206 pounds last summer. Bill and Sandy had planned to get married this summer, but have had to put those plans on hold.

We wish these two special people all the best in their struggle with mesothelioma.

*** POSTED MAY 21, 2000 ***

On May 22, Bill married in long-time love Sandy while admitted to the Boone Hospital Center in Columbia, Missouri. On the morning of May 25, 2000, Bill died of mesothelioma.

Following is a tribute Sandy Tice wrote which was read at his funeral:

Thank you all for coming. I got to know Bill through his writings and through verbal communication in its purest form unhindered by body language, eye contact, and subtle nuances that define our relationships with others. Over time I learned that a relationship with Bill involved much more than simply "knowing" him - Bill was a man to be experienced.

As I experienced Bill, I encountered a man with strength of spirit and depth of character unlike anyone I had ever known. He brought out and nurtured the sensitive, loving aspects of my own personality that had long been stifled. I felt safe and protected, and always wrapped in a cocoon of his love. Bill said, "Wiggle your toes," and I learned to relax and savor the moment, and to appreciate the simple pleasures of life. I was the happiest I have ever been.

Bill was a teacher. He considered Christ the greatest teacher of all time, and sought to emulate him. He taught strength in the face of overwhelming adversity, and humility. Bill said, "Stay humble and don't stumble." He taught kindness and graceful acceptance of circumstances beyond our control. When my faith was shaken to the core, he gently reminded me, "God loves us," and helped me believe it. He helped me continue to pray, and he continued to pray his frequent one-liner, "Jesus Christ give me faith." When I grappled with issues of guilt imposed by criticism from the community, Bill told me, "Don't hold yourself bound up." His belief was that Christ came to teach us forgiveness and abundant life free from guilt and self-condemnation. Bill possessed wisdom beyond my understanding. When I questioned how a man could possibly attain his level of wisdom, he said simply, "A fool is a man who doesn't know, but doesn't know he doesn't know. A wise man is a man who doesn't know, but he knows he doesn't know. But when he knows, he knows he knows."

Bill was selfless. As his health failed and we met obstacles at every turn in seeking a doctor who would help him, he worried about me. And he worried about my mother and her own life and death struggle, and he prayed for us. He worried about his children, as all fathers do, and continued to reach out to them, and to teach them. In his selflessness, he taught me perseverance and helped me recognize and build on my own strengths as we pulled together and became our own support system, even as our hearts were breaking.

Despite enormous physical challenges, Bill never complained. He endured the indignities imposed by his disability, and always, always said, "Thank you" for any help received. Caring for Bill became a joy with reward far exceeding the effort expended. As he grew weaker and we had even less contact with people and the world around us, we strived to maintain normalcy and draw strength from the people who remained in our lives, especially Bill's sisters and two very special women, Joy Wade and Nora Rhodes. With their help, Bill was able to maintain his daily routine and his dignity, and and to continue to hope for the future. Bill was a man who appreciated. When I commended him for his bravery as he faced his illness of the past ten months and strived to maintain his health, Bill said, "The gem cannot be polished without friction nor the man perfected without trials." As he lay dying, he said, "I want to do this right," and he did. He left this earth polished to perfection. Bill is my hero.

Bill was my soulmate, the great love of my life. He brought out the best in me, and said I did the same for him. When speaking of our relationship even until the very end Bill told me, "I'm the luckiest man alive." I knew I had been paid the highest compliment I will ever receive. His last words to me, summoned with every ounce of effort and breath available, were, "I love you." As I held him as he took his final breaths, the room became brighter and clearer and outside sounds faded, and I knew we were surrounded by holiness. Bill has gone on to abundant reward beyond our limited imaginations. I have been privileged to live the love of which poets write and songs are sung. My heart is filled to overflowing with love for and precious memories of this exquisite man.

On this beautiful day of celebration of the life of my beloved sweetheart, Bill Tice, please remember his mottos: "No killing, no stealing, no lying," and "Please, say please and thank you. Thank you."

Mrs. William A. Tice, Jr.

*** POSTED JUNE 6, 2000 ***