Rallies For The Treatment Ahead
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 Methodist Hospital in Merrillville, Indiana. The cytology showed severely degenerated cells, prompting the pathologist to recommend a second tap or biopsy. Sharon's doctors recommended a laparaoscopy for diagnosis.
On July 10, the Community Hospital in Munster, Indiana admitted Sharon for a laparoscopy, possible laparotomy and biopsy of a possible peritoneal mass. Pathological testing performed on the biopsy material obtained 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 was diagnosed with pleural mesothelioma in 1989. They knew this cancer was very rare. Lightning had struck twice! Dr. Nicholas Vogelzang, a renowned expert in the field of mesothelioma, administered experimental chemotherapy to Sharon's sister, who died from complications of the treatment. Sharon remembered with gratitude that this compassionate doctor cared enough to attend her sister's funeral. But the memory also troubled Sharon, for if a renowned expert like Dr. Vogelzang could not help her sister, what hope did Sharon have now?
Sharon's doctors at Community Hospital immediately ruled out surgery, and recommended chemotherapy with Taxol and Carboplatin. The Johnsons decided to explore their treatment options.
David Johnson set out to learn about his wife's treatment options with the same grit and determination that brought him rapidly through the ranks from journeyman machinist to project manager at the Inland Steel Company in East Chicago, Indiana, where David worked from 1957 to 1995. David, a big, gruff, bear of a man with a good heart, pored over every bit of information he could find. He found this website, and asked for our assistance in Sharon's fight for life. He worked for days on end with little sleep. He tried to quell the anguish caused by the realization that asbestos from his work clothes at Inland had poisoned his wife. His hair literally began to turn white.
On July 28, the Johnsons consulted with the University of Chicago's Dr. Kindler, who recommended an Onconase clinical trial. The Johnsons then contacted Dr. Robert Taub's office in New York City. On August 3, the Johnsons met with Dr. Taub, whose 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 and Interferon-gamma (see http://www.mesothel.com/pages/primer.htm). Then Sharon's doctors would perform a repeat laparotomy with a "hot chemo belly wash" of one hour.
Sharon's doctors told her to plan to be in New York City for six months, but the Johnsons are preparing for a nine month stay. Other patients have told the Johnsons that it can be hard to stay on schedule with the chemotherapy.
The Johnsons have done well for themselves and their four children through hard work. Still, the expense of an extended stay in New York City and their uncertainty as to whether health insurance would cover Sharon's treatment have daunted the Johnsons. The expense could take everything they worked for, but 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.
Dr. Chabot's surgery was a success! The mesothelioma was in the very early stages, stage I or "between" stages I and II. "All" Dr. Chabot had to do was remove the omentum and place the intraperitoneal "ports" for the non-systemic chemotherapy. They are now planning for the chemotherapy regimen in accordance with Dr. Taub's phase II protocol (weekly intraperitoneal infusions of cisplatin alternating with doxorubicin for a total of eight courses, followed by intraperitoneal interferon-gamma).
Sharon recently spoke with a man from St. Louis who had just completed the treatment with Drs. Taub and Chabot. This gentleman started his treatment last October and with his last Pet Scan in August was disease free. Yes! Every little bit of good news helps. Sharon and David have returned briefly to their home in Indiana, but must soon return to New York City for chemotherapy.
The Johnsons have been blessed with four children, three sons and a daughter, and with grandchildren as well. Their daughter works for a charitable organization in Nicaragua. 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 will miss their children and grandchildren during their long sojourn in the Northeast.
We hope the Johnsons continue to meet courageous and charitable people on their road to recovery. We wish them all the best and will keep you posted.
** POSTED OCTOBER 6, 1999 **
On December 12, we received an update from Sharon.
Dear Roger:
I am trying to take care of my affairs and get things in order for my family. Not that I am going any place real soon.
Dr. Taub told us that he is able to get rid of the disease in a little less than 50% of his patients. That is some accomplishment. How long it stays away I don't know, but considering the diagnosis I was given a year and a half ago, I'll take it! He is a brilliant doctor and his staff is the greatest.
I went back to work in October but I think it is too much for me so I plan on quitting when we return from Florida. It was good mental therapy for me, I had too much time to think about "Poor Me" and I needed to feel "normal" again.
Have a happy holiday. Thanks again for everything.
Sharon
** POSTED DECEMBER 13, 2000 **
An Update -- 1/24/01
Sharon and David are traveling to the Bahamas for treatment at the Immon-Augmentative Therapy Clinic ( IAT). We wish them well, and will follow her progress
An Update -- 5/15/01
On May 14, 2001, Sharon wrote regarding her recent immune augmentation therapy at the IAT Clinic in the Bahamas
We are back home in Indiana. It was an incredible experience in Freeport, we are very glad that we went. Hopefully the treatment will work at rebuilding my immune system. I recently had a PET Scan and CT Scan and there has been no change since my scans last fall. We were back in NY last week to see Dr. Taub and things look good. He has a doctor working in his office doing research in mesothelioma, he is really determined to find a cure.
Keep up the good work, Sharon!
An Update -- 8/14/01
Sharon traveled to New York on Thursday, August 9, for a check up with Dr. Taub. During the appointment, Dr. Taub informed her that the latest CT and PET scan showed no reoccurrence of mesothelioma. Needless to say, Sharon was ecstatic, "Dr. Taub's treatment is successful!
Sharon went on the say "Thanks to Roger Worthington, Trey Smith and their staff for working so hard getting the word out that there is some treatments available for us, we were able to find the best doctor in the world to fight this disease. We know we can count on your website to get the latest and best information on Mesothelioma."
Sharon is not experiencing any excruciating pain right now. She still speaks very highly of Dr. Taub and his staff. She considers him a "wonderful physician."
An Update 12/5/01
Sharon Johnson and her husband, David, are heading to Florida for the winter. They will be living halfway between Sarasota and Tampa Bay, and in close proximity to their son, David, and their grandchildren. Sharon had a CAT scan in November, and her results were good. We will keep you posted on the progress of this sweet woman, as she tries to stave off cancer and live her life.
"...she would not be alive today." -- 12/14/01
I believe you already know my sister. Her name is Sharon Johnson and she lives in Valparaiso, Indiana. She was diagnosed with peritoneal mesothelioma in 1999. It was Mr. Worthington that helped my sister find Dr. Taub. I firmly believe that if not for him and his web site she would not be alive today. Our other sister, Pat, died of pleural mesothelioma in 1990. She couldn't find any helpful information. There wasn't an Internet like we know it today.
I'm so glad that there is now a foundation (MARF) to help with funding for research. Research has been lacking for too many years. Too many lives have been lost to this needless disease. Thank you and all members for getting information out to people and hopefully someday a cure.
Sue
An Update -- 3/8/04
Sharon says she is doing very well - "considering." She continues to go in to the IAT Clinic every four months for her "two-week tune-ups" and advises that there is much going on at the clinic. She said the clinic will soon be conducting stem-cell research. The only drawback, if you want to call it that, is that her tumor had spread to the lining of her lung. The growth was minimal and they do have it under control.
*** Sharon Johnson passed away on September 11, 2008 ***
