John McNamara September 28, 2005
You instantly notice John McNamara when he walks into a room. A burly figure,
with a grayish beard and ruddy cheeks, John is the spitting image of Kenny
Rogers, the country western singer. Intimidating? Not a chance. More like
charismatic. He's one of those guys you just know has a story and
wants to tell it.
More often than not, his stories are about his wife and children. John
and T.C. have been married for over thirty years.
AN UNTAMED SPIRIT
John is an active man who would never blink at a broken bone. In fact,
he once broke his left leg in a skiing accident, and shortly thereafter,
broke his right leg at work. While at work, John took the brace from his
left leg and actually molded it to fit his right leg, setting the bone
before driving himself to the hospital. When he got to the hospital, the
doctors found that John had done such a good job setting the bone, that
there was nothing more they could do! He's never been afraid of a
Although just shy of 60 years old, John was not ready to slow down. As
a crane operator, he had no problem with climbing up tall tower cranes
and nimbly maneuvering the booms and winches with the precision of a Swiss
watchmaker. He was working steadily at his job until August 2005 when
he began to have shortness of breath and pain in his lower back.
At first, John attributed his shortness of breath and cough to a simple
cold virus. But the symptoms became serious enough to push John to visit
the emergency room at Holy Cross Hospital in Mission Hills, California
in early August 2005. At the hospital, chest films were taken that revealed
fluid build up in his lung cavity. To relieve the pressure, the doctors
performed a thoracentesis, withdrawing over one liter of pleural fluid.
John recalls they used a big needle, and once the skin was punctured the
fluid "started shooting out like a fire hose." The fluid was
sent out for testing, and the results showed mesothelial and atypical
cells, but it was not conclusively malignant. John's doctors kept
him in the hospital for continued observation.
REJUVENATION IN A HAWAIIAN GETAWAY
The McNamaras had planned a family trip to Hawaii at the end of August.
But, as the scheduled day of departure approached, John was laid up in
a hospital. He was feeling better and growing restless. The doctors agreed
to discharge him, and John spent the next month with his family on tropical
shores. His trip was rejuvenating, and he only had occasional problems
When the family returned to California the next month, John returned to
Holy Cross Hospital for more testing. In September 2005, John underwent
another thoracentesis where doctors removed two liters of fluid behind
his right lung cavity. This time around, testing of the fluid returned
a confirmed diagnosis of malignant pleural epithelial mesothelioma. His
doctor painted a very bleak future coping with mesothelioma and wrongly
gave him only a two-month prognosis. The only so-called advice offered
by the uninformed doctor was to get busy doing the "five best things
you ever wanted to do." John immediately replied that he just wanted
to be with his family and live out life on his own terms. However, when
it came down to it, John really wanted to fight for his life.
ASSEMBLING A TREATMENT PATHWAY
The McNamaras did not take this grim prediction lying down. For the next
month, they searched high and low for doctors who had experience treating
mesothelioma. Most of the doctors they talked to simply suggested chemotherapy.
None offered any hope. John and T.C. did not accept the gloom and doom.
Finally, T.C. found hope with Dr. Robert Cameron, the Chief of Thoracic
Surgery at UCLA Medical School in Los Angeles, California.
Post surgery, November of 2005
They met Dr. Cameron in the fall of 2005 at the Mesothelioma Applied Research
Foundation (MARF) symposium in Las Vegas, Nevada. They learned that Dr.
Cameron's approach to surgery is far different than most. Instead
of performing an extra-pleural pneumonectomy ("EPP"), a radical
surgeryinvolving removal of the tumor along with all of the encased lung,
the pleurectomy / decortication procedure ("P/D") that Dr. Cameron
performs involves meticulously removing the tumor and leaving the lung
intact. Dr. Cameron's procedure affords patients a much better post
surgical quality of life and, when followed by radiation and immunotherapy,
has produced median survival rates far in excess of that associated with
the EPP procedure.
John was convinced that Dr. Cameron's plan afforded him the best opportunity
for long term survival. Dr Cameron performed the P/D surgery in November,
2005. The procedure lasted approximately eight hours, far longer than
the alternative EPP procedure, but Dr. Cameron was able to remove the
tumor and leave John with the use of his right lung.
John's experience in the hospital after the surgery was challenging.
John has never been able to lie on his back comfortably, and following
surgery, he could not lie on his right side either because of all the
protruding drainage tubes and surgical incisions. So John spent eleven
days lying on his left side, trying to recuperate. He spent sleepless
nights there, every breath painful with four chest tubes for seven days.
Two tubes were removed on the seventh day and the other two removed on
the tenth. As he started to recover from his surgery, however, John began
to have atrial fibrillation or an abnormal heartbeat, which continued
to keep him in the hospital. T.C. never left his side. Finally, after
eleven days, the hospital released him to his family.
John walking the halls of UCLA Medical Center after undergoing a pleurectomy
with decortication. November 2005.
After he recovered sufficiently, John began radiation therapy which lasted
from late January through mid March, 2006. Following radiation, he had
another CT scan that revealed abnormalities in his right lung. Dr. Cameron
attributed these abnormalities in part to surgery, radiation, and the
Two months later in May, John embarked on the next phase of treatment.
He began taking low doses of interferon to help bulk up his own immune
system to combat the mesothelioma. Interferon is a relatively new treatment
option for mesothelioma patients, but has shown good results for some patients.
However, after administering the interferon for one month, John's shortness
of breath grew worse. By the middle of June 2006, he decided to discontinue
the interferon medication. According to Dr. Cameron, increased shortness
of breath is a rare side effect of the interferon treatment that occurs
with some patients.
John discussed future treatment options with Dr. Cameron, including the
benefits and drawbacks of chemotherapy. Ultimately, John decided against
it. Since June 2006, the only treatments he takes are painkillers to help
soothe any soreness in his chest.
LIFE AFTER SURGERY
Even though the surgery went well, John was distraught physically from
residual pain and medicinal side effects. He had to take so many drugs
(just in the first month he worked down from three pills every three hours
to one pill every five hours) that he became nervous about how the medicine
was affecting him.
In the months following his surgery, John found it difficult not to partake
in all of the physical activities he shared with his young daughters prior
to his diagnosis. But, instead of lying on the couch and feeling sorry
for himself while life passed him by, John began going on walks with his
girls, first around a local shopping mall, then, when he could make it
up the stairs, he joined them on hikes in the trails around their home,
eventually making it to the top of the notorious look-out hill.
John showing Roger Worthington (l) and Senator Dick Durbin recent photographs
of him climbing a mountain in Hawaii, post-surgery at the 2006 MARF Symposium
in Chicago, Illinois held in October, 2006
In August of 2006, John decided to take his family back to Hawaii for another
family vacation. Perhaps the trip was just what John needed because he
found that he was able to enjoy walking on the beach and even a little
climbing. John felt a special sense of accomplishment when he hiked with
his daughters to the top of Diamond Head. John proudly boasts that he
passed many other hikers on the way up and celebrated with a "Rocky
Balboa-like" victory dance at the top.
It's no secret that John attributes much of the success he has experienced
to date in his battle against mesothelioma to the work of Dr. Cameron.
On August 4, 2006, John had a follow up visit with Dr. Cameron, and a
PET/CT scan of his chest, abdomen, and pelvis on September 29, 2006. Results
from these scans indicated a possible recurrence of the tumor. Dr. Cameron
advised John that another PET/CT scan is needed as well as another bronchoscopy
to determine the disease's progression.\
Even through this, John has not lost hope; he continues to live every day
fully. He returned again to the third annual Mesothelioma Applied Research
Foundation symposium during October 2006 in Chicago, Illinois. At the
symposium John shared his story. He spoke about pain, about the support
of family, and of finding the best medical treatment available. He even
shared a picture taken of his victory dance atop Diamond Head Mountainwith
the other attendees, including Senator Dick Durbin who spoke about the
need for asbestos reform and mesothelioma funding.
John has not stopped fighting and continues to share his story along the way.
John McNamara and Roger Worthington, October, 2006
*** POSTED NOVEMBER 27, 2006 ***
Mr. John McNamara passed away on October 8, 2007