In April of 1999, Sharon Johnson,
a 58 year old housewife and clerical worker living in Valparaiso, Indiana, began to feel
abdominal pain. She saw her family physician in Munster, Indiana. A battery of tests,
including a computerized axial tomography (CAT) scan of the abdomen and pelvis, ultrasound
and pelvic sonography revealed moderate fluid accumulation called ascites.
Sharons doctors assured her
that it was irritable bowel syndrome or diverticulitis, nothing too serious. But
Sharons 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.
Sharons 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. Sharons 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 Sharons sister, who died from complications of the treatment. Sharon
remembered with gratitude that this compassionate doctor cared enough to attend her
sisters 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?
Sharons 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 wifes 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 Sharons 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 Chicagos Dr. Kindler, who recommended an Onconase
clinical trial. The Johnsons then contacted Dr. Robert Taubs 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.
Taubs 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 Sharons doctors would perform a
repeat laparotomy with a "hot chemo belly wash" of one hour.
Sharons 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
Sharons 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. Taubs 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 Sharons treatment.
Dr. Chabots 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. Taubs 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. |