Jack Jensen has looked danger in the eye before. In 1979, he went to work
as a United Nations (UN) administrator of a refugee camp on the Cambodian
border. His job was to make sure that the refugees actually received the
donated food, medical supplies and other services that they needed to
survive, as Khmer Rouge bandits were crouching in the jungle waiting to
hijack the supplies.
The Khmer Rouge would sometimes raid the camp in broad daylight to capture
refugees, who'd they torture or even execute. Jack, armed only with
compassion and his own wits, would intervene. He helped free many refugees,
but he seems to remember most the ones he didn't. Jack doesn't
like to talk about the executions, but his wife Bernita whispered that
the grisly spectre involved large cauldrons and boiling water. Over the
course of six months, Jack's courage garnered attention. The refugees
relied on him -- they loved him -- and before long he became an official
enemy of the murderous Khmer Rouge. After six months of service to the
United Nations, the Khmer Rouge came for him, and Jack was forced to flee
for his life.
In the early 1990s, Jack spent three weeks in war-torn Rwanda, assessing
a bullet-riddled hospital to plan its restoration. In 1995, Jack again
went abroad to assess the operation of a hospital, this time in bombed-out
Sarajevo. A cab driver's fear of snipers forced him to enter the city
by crawling inside a drainage pipe, at the end of which the police were
waiting with guns raised. Fortunately, the police were in a mood to ask
questions before shooting, and after reviewing his credentials he was
allowed to continue on.
Jack had known external threats. He faced them with the confidence of a
man with a clean conscience and a strong heart. He kept physically fit.
In May of 2001, the 64 year-old began training for a marathon scheduled
for autumn of that year. In the first few weeks, he noticed that something
inside was amiss. He began to feel worse after a hard work out. He was
losing wind, and his pace was decreasing, while his fatigue and shortness
of breath increased. Instead of achieving the much sought after "runner's
high," he found himself struggling with pain and misery.
WARNING SIGNS APPEAR ON THE RADAR
Jack visited his primary care physician in October. The doctor thought
that Jack was suffering from allergies and he prescribed allergy medication.
But Jack's symptoms persisted, and he returned to his doctor. A chest
film was ordered on October 18; it showed fluid around Jack's left
lung. He underwent a CT scan on October 26, revealing a more detailed
image of a large, left free-flowing pleural effusion.
Jack's doctor referred him to a pulmonologist who examined the CT scan
and performed a thoracentesis, withdrawing approximately 1100 ccs of dark,
amber, bloody fluid. Cytological tests returned negative for malignancy;
however, the fluid contained high levels of protein. The thoracentesis
temporarily alleviated Jack's breathing discomfort, but he continued
to lose weight and endure night sweats.
On November 5, Jack presented with a persistent left pleural effusion to
a pulmonary surgeon at Long Beach Memorial Medical Center. A review of
the CT scan showed a large left pleural effusion, with "a suggestion
of some irregularity of the parietal pleura in the anterolateral portions
of the left chest." Further examination of the chest revealed diminished
breath sounds over the entire lower posterior and inferior portions of
the left lung fields.
Jack's entire left lobe was
atelectatic (collapsed), and he underwent a thoracentesis in the surgeon's office,
in which 1700 ccs of fluid were removed. It was recommended that Jack
then undergo bronchoscopy and left thoracoscopy with biopsies of his pleura
and one parenchyma. The possibility of a talc pleurodesis was discussed.
PAIN IS CAUSED BY SOMETHING MORE THAN ALLERGIES
Jack's pulmonary surgeon performed a fiberoptic bronchoscopy, left
thoracoscopic assessment of chest and biopsy of pleura times six, as well
as a talc pleurodesis. Jack's left lower lobe lower bronchi was compressed
externally, probably due to the effusion. A chest tube was inserted, and
600 ccs of fluid were then aspirated from Jack's chest after a visual
examination. Doctors then further collapsed the left lung for purposes
of observation. On examination of the pleural surfaces, from the apex
down over the diaphragm, there was flank large studding with significant
masses which were pinkish and white in color. These extended over all
free surfaces of the pleura and included the pericardial and mediastinal fat.
Biopsies were taken from the anterior wall and submitted for frozen section
analysis, and reported as probable mesothelioma. Talc was then introduced
into the pleural space. Jack's lung was reinflated, and the incision
was closed. The chest tube remained in Jack's chest to allow any air
and fluid still present to drain.
A radiology report from November 6 noted patchy atelectasis at the lung
base, left greater than right. Jack's oncologist suggested that the
tumor's diffusion ruled out surgical resection.
Jack was discharged on November 7 to home care with Advil and Vicodin and
with a follow-up visit planned. After immunohistochemical staining and
electron microscopy, the pathologists confirmed the diagnosis of malignant
pleural mesothelioma.
HOW DO YOU CURE AN INCURABLE DISEASE?
On November 19, Jack's oncologist started Jack on a four-week cycle
of Cisplatin and Gemzar. On November 28, Jack underwent a battery of tests,
including CT scans, which raised the concern of possible lymph node involvement.
Jack's son, Stephen, and his brother-in-law, Jeff, had been investigating
treatment possibilities after Jack's diagnosis. They found several
treatment options and expert physicians. Two physicians stood out, Dr.
Robert Cameron and Dr. David Sugarbaker.
On December 3, Jack and Bernita consulted Dr. Robert Cameron of UCLA Medical Center for a second opinion. Dr. Cameron is one of the
foremost treating physicians of mesothelioma in the world and helped found
the Mesothelioma Applied Research Foundation (MARF). Dr. Cameron noted that Jack continued to have dry cough and mild dyspnea
on exertion after one flight of stairs. He had also lost 15 pounds over
the six weeks prior to the visit, and he still suffered "drenching"
night sweats.
Dr. Cameron discussed Jack's options with him. They included no further
therapy; chemotherapy alone; or surgery followed by post-surgical radiation
and possible further treatment with an
angiogenic inhibitor . Dr. Cameron felt that Jack would be a good candidate for his procedure
at UCLA, a pleurectomy with decortication (P/D), which consists of peeling
away all visible tumor from the chest wall, lung, diaphragm and other
organs. Jack was interested in surgery, and Dr. Cameron tentatively calendared
surgery for the end of the month.
On December 18, Jack consulted with Dr. David Sugarbaker at Brigham and Women's Hospital in Boston, who determined that Jack
was a suitable candidate for his extra-pleural pneumonectomy (EPP). An
EPP is a procedure in which the tumor, the affected lung, the diaphragm
and the pericardial sac are removed. The diaphragm and pericardial sac
are replaced with Gore-Tex patches during the marathon procedure, and
Dr. Sugarbaker's protocol for Jack's surgery called for an intracavitary
chemotherapy wash during the surgical procedure. Chemotherapy is washed
around in the pleural cavity from which the affected lung has been removed
for the purpose of eliminating microscopic tumor cells that could be lingering
after all visible tumor had been resected.
There is currently a debate about which surgical method is better for successfully
treating mesothelioma. The P/D is considered a "palliative"procedure,
based on the notion that as there is not yet a cure for mesothelioma,
the best option is to extend the life of the patient and balance that
with a sustainable and acceptable quality of life. The rationale underlying
the EPP is that mesothelioma can be cured, and it is best to aggressively
attack the tumor in order to eliminate as much tumor as possible in making
this objective a reality. Klaus Brauch, a former software company executive
and mesothelioma patient, wrote an essay detailing his investigation into
whether EPP or P/D would work better for him.
On January 17, 2002, Jack Jensen underwent the EPP with Dr. Sugarbaker
in Boston, an endurance test of a procedure lasting anywhere from six
to ten hours. Because of Jack's prior chemotherapy, Dr. Sugarbaker
used three chemical washes of the chest cavity consisting of Cisplatin
and Gemzar in order to preserve a consistent chemotherapy treatment protocol.
Jack was then to resume chemotherapy with Cisplatin and Gemzar eight weeks
after surgery and then continue his treatment protocol with radiation therapy.
LEARNING TO RELY ON OTHERS AND LIVE
Following surgery, Jack suffered complications including an irregular heartbeat,
a cause for great concern for him, Bernita and his treating staff. A five-day
hospital stay was extended to 12 days. Following his release, he was still
not out of the woods. For three more months, Jack's heart needed monitoring,
requiring him to take medication to correct the problem.
In addition to worrying about his heart, Jack had to learn to live with
only one lung. No more training for marathons, no more strenuous activity.
He was now adjusting to a life that revolved around the timing of pain
medication.
After his release from the hospital, Dr. Sugarbaker instructed Jack to
gain weight and start walking. Jack began by walking for 15 minutes away
from his house, then turning around and walking back, just making it.
The next time out, he again walked for fifteen minutes, but this time
doing it just a little bit faster. Each time he'd walk, Jack strove
to maintain just a slightly quicker pace than the one he did the day before.
He found some comfort in the mini-victories -- climbing a flight of stairs,
a trip around the block, making lunch without collapsing.
Some days are better than others, but Jack continues to try each day, struggling
to overcome his new physical limitations. He is at least twenty pounds
under his "playing weight" and much of his lean muscle has gone
soft. Pain persists, and oxycodone provides inconsistent relief with unwanted
and even debilitating side effects.
Jack dreams of returning to work at the Christian Outreach Appeal (COA),
a charitable organization he founded in the fall of 1980. COA began as
a program to run orphanages in Mexico and, under Jack's guidance,
it expanded to include a program to teach Mexicans how to farm efficiently.
The farming program in Mexico continues to operate to this day. Jack later
opened a branch of COA in his native Long Beach to provide low-cost housing
for those who need it. He expanded COA in Long Beach to include transitional
housing for men and for women with young children. The programs continue
to blossom.
He also thinks of his family's future. He wants to see his children
grow and prosper. He worries about Bernita. Married in 2001, Jack and
Bernita couldn't imagine the life they now have. They dreamed of companionship,
of old age. Jack has always provided for others, always ensured that those
who needed help received it -- even complete strangers, whether they were
refugees halfway around the world, or locals who simply needed a break
to get their lives moving again. Now, missing a lung, facing formidable
odds, and unable to work, Jack feels helpless in supporting his own wife.
Jack has faced many dangers. He has learned not to panic. He maintains
a deep and abiding faith that good will triumph over evil. Even then,
Jack understands that the courage and strength he mustered to survive
the horrors of the Khmer Rouge may not be enough to beat an even more
formidable enemy. He will need help from his doctors, and they will need
help from the medical laboratories where, we hope, men and women of good
will are working hard to find a cure.
*** POSTED SEPTEMBER 12, 2002 **