The Ultimate Oppressor
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 **
