Lightning struck the same family twice on July 12, 1999, the day doctors diagnosed 58 year-old clerical worker and housewife Sharon Johnson with peritoneal mesothelioma. Ten years earlier, Sharon's sister had been diagnosed with pleural mesothelioma.

In April of 1999, Sharon had begun to feel abdominal pain. Her family physician ordered a battery of tests, including a computerized axial tomography (CAT) scan of the abdomen and pelvis, ultrasound and pelvic sonography. These tests revealed moderate fluid accumulation in the abdomen called ascites. Sharon’s doctors assured her that it was irritable bowel syndrome or diverticulitis, nothing too serious. But Sharon’s abdominal pain worsened.

On June 22, Sharon underwent a paracentesis at the local hospital. The cytology showed severely degenerated cells, prompting the pathologist to recommend a second tap or biopsy. Sharon’s doctors recommended a laparoscopy for diagnosis. Sharon was admitted on July 10 for a laparoscopy, possible laparotomy and biopsy of a possible peritoneal mass. Pathological testing performed on the biopsy material led to the diagnosis two days later of epithelial peritoneal mesothelioma.

Sharon and David, her husband of 40 years, went into shock. Sharon’s sister had been diagnosed with pleural mesothelioma in 1989. This cancer, which they knew was very rare, had now struck the same family twice! The Johnsons were also painfully and personally aware of how difficult the tumor is to fight. Sharon’s sister had been treated by a renowned mesothelioma expert, but had died from complications of an experimental chemotherapy. Were there any advances in the past 10 years which would help Sharon?

At first it appeared not. Her doctors immediately ruled out surgery. Three different doctors told her that she was not treatable and would probably only live six months! All they could recommend was either hospice or to "try" chemotherapy with Taxol and Carboplatin. The Johnsons decided to keep searching. David, determined that his wife would not share her sister's fate, worked for days on end with little sleep, researching mesothelioma treatment options with the same grit that brought him through the ranks from journeyman machinist to project manager during 38 years at a steel mill.

On August 3, the Johnsons met with Dr. Robert Taub in New York City. His enthusiasm and knowledge impressed the Johnsons. The surgery was scheduled for September 17th. The plan was for Dr. Taub’s associate, Dr. John Chabot, to perform the surgery, shaving down all tumors one centimeter or larger. After surgery, Sharon would undergo twelve weeks of chemotherapy utilizing Cisplatin, Adriamycin (doxorubicin) and Interferon-gamma. Then Sharon’s doctors would perform a repeat laparotomy with a "hot chemo belly wash" of one hour. Finally, she would undergo a course of radiation therapy. (Dr. Taub’s updated version of this protocol is described on the Clearinghouse of Mesothelioma Clinical Trials..." page.)

Sharon’s doctors told her to plan to be in New York City for six months. However, other patients had told them that it can be hard to stay on schedule with the chemotherapy, so the Johnsons prepared for a nine month stay.

The Johnsons have been blessed with four children, three sons and a daughter who works for a charitable organization in Nicaragua, and with grandchildren as well. The Johnsons are a very close family. Before Sharon fell sick, David was finishing out the basement of their rambling home, a place for the grandkids to play. Now they had to face being separated from their kids and grandkids for up to nine long months. Also, the expense of an extended stay in New York City and their uncertainty as to whether health insurance would cover Sharon’s treatment was daunting. While the Johnsons have done well for themselves and their four children through hard work, the expense could take everything they had worked for! Nevertheless, the Johnsons just damned the expense and plowed ahead, and in the process experienced something wonderful. They met some people in Dr. Taub’s waiting room with a condominium in New Jersey 75 minutes away. These good people, basically strangers, offered their home to the Johnsons for the duration of Sharon’s treatment.

The surgery with Dr. Chabot went very well. He found that the mesothelioma was not as advanced as feared, but was in the very early stages, stage I or "between" stages I and II. He removed a portion of the peritoneum known as the omentum, and placed intraperitoneal "ports" for the non-systemic chemotherapy. She was in the hospital for about five days after this surgery.. Then she and David were able to return briefly back home to Indiana for a visit and rest before heading back to New York City for the chemotherapy.

Sharon’s experience with the chemotherapy was not as bad as she had expected. Dr. Taub kept close watch on her, and the medications she was prescribed helped with the nausea. She would be in the hospital for one or two days for the chemo, depending on whether it was the Adriamycin or the Cisplatin. This continued for eight weeks, and then Sharon began her Interferon-gamma treatments. These were given on an outpatient basis, so Sharon and David were able to return home to Indiana when this treatment started. Each week for four weeks, they would fly into New York on a Sunday evening, go to the hospital on Monday for the treatment, which usually took about three hours, and then fly home Monday evening.

Sharon says she learned during the chemotherapy treatments not to move around much, the motion would make her ill. She also did not eat much at that time; saltine crackers and popcicles were her diet. She lost some weight but regained it all after the treatments stopped. The Cisplatin caused some side effects. She had some neuropathy (nerve degeneration) in her fingers and toes, and some hearing loss. Her vision is not as good as it use to be, but she says that is a small price to pay for the results she got. She had no side effects from the Interferon. In fact she had lots of energy during that treatment.

After these twelve weeks of chemotherapy, Sharon was finally ready for the "second-look" surgery, with the one hour "hot chemo belly wash." This surgery also went well. However, after the surgery, a CT scan of the chest and abdomen -- intended to make certain every thing was OK -- showed a tumor with mesothelioma cells on Sharon’s lung. She had to wait a few weeks to recover from the abdominal surgery, and then have a third surgery, a thoracotomy to cut through the chest wall and remove the tumor. Sharon found that it took some time to recover from three surgeries so close together. She also had twenty radiation treatments she had to recover from.

Since recovering from this rigorous treatment, Sharon has been doing fine. By October 2000, she had returned to work. She found this to be good mental therapy, since without work she had too much time as she says to think about "poor me," and she needed to feel "normal" again. After several months, she decided it was too much physically, so she retired, to focus on other things. She is not on any medication. She has been returning every three months or so to New York for check ups with Dr. Taub, including CT and PET scans. Sharon received a very pleasant call from Mary, Dr. Taub's assistant, just this week (mid-November, 2001). Her most recent scans continue to show no reoccurrence of mesothelioma! Needless to say, Sharon is ecstatic with Dr. Taub and his successful treatment. She considers him a "wonderful physician" and speaks very highly of his staff.

With the confidence and joy of someone who has had her health, and her life, restored, Sharon has been busy living, enjoying life and family. She joined the ladies’ golf league last summer and has done a lot of traveling. She and David are preparing to go to Florida for the winter. Last September they were in Nicaragua with their daughter to experience their granddaughter’s first birthday. All this for a woman who, more than two years ago and while in excruciating pain, was told by three doctors that she was not treatable and would probably only live six months!

As Sharon says, she and her family refused to accept that death sentence without a fight. They kept searching, believing that there must be a treatment out there somewhere. In the end she believes she was fortunate and that God has taken care of her. Acknowledging that this is a tough disease, she wants others to know that as there was for her, there is help somewhere for them.