Family Man Explores Options, Chooses EPP & a Chance for a Cure

A Mesothelioma Patient's Plea

Asbestos is the devil's shill!
When breathed it makes us very ill.
Where once inside it sets a fire,
Whose flames grow ever higher and higher.

Some call it meso, some a curse!
Men, women, old and young get worse.
Because no treatment's known to cure,
This tumor the exposed endure.

For each of us, our heart's desire,
Would be a way to quench this fire!
Omentum, diaphragm and lung,
We lost when cancer's trap was sprung.

Our suffering erodes our will,
We've tasted chemo's bitter pill,
With scalpels scarred and photons burned,
We've paid the price that meso's earned.

Please help us fight to save the lives,
Of sons and husbands, daughters, wives.
Those dying and all those who follow,
The thousands more who'll die tomorrow.

For those afflicted there's no choice,
But fight to stay the cancer's course.
Let research give them tools to fight,
And set this deadly wrong to right.

* * *

Please encourage your government to provide funding into mesothelioma research! Write your congressman and senators today to support research rather than the FAIR Act which seeks to pardon the asbestos companies who unleashed this poison on the public.

If you could only read one thing on our website, read this.

"You shall know the Truth, and the Truth shall set you free." This man has done more than any patient I have ever known to search for the Truth. He has interviewed the best and brightest doctors. He has found and read with amazing comprehension the published literature. He has spoken to other mesothelioma patients. He has zeroed in on perhaps the most critical question, that is, would an extra-pleural pneumonectomy (EPP) for a patient with early stage, epitheliod type and negative lymph nodes offer a better chance of long-term survival than a pleurectomy / decortication?

He has found the Truth, but it may not set him free. He has discovered that despite the giant strides modern medicine has made in curing cancer, and despite the long-standing epidemic of asebstos disease in this country as well as worldwide, we have not even begun to truly find a cure. As you read his story below, keep asking yourself how long must this cycle of diagnosis, despair and death continue before we as a nation fight back? Our nation has recently been reawakened to the importance of funding programs to target and eliminate terrorists in order to protect the health and safety of our people. And yet our government and the industry that is primarily responsible do little to nothing about eliminating the terror of millions of Americans, who continue to live with asbestos time bombs ticking in their chests.

The time is long overdue to launch a nationwide assault on mesothelioma. We must begin by addressing the fundamental need that doctors and patients have to evaluate the treatment options based on reliable clinical data. Over the past 40 to 50 years, patients have been treated at a variety of centers throughout this country with poorly documented results. It is imperative that a centralized databank be established in order to understand the natural history of the disease and the outcomes from treatments currently being used as well as those developed in the future, to better evaluate the benefits of the various current treatment approaches, and to best evaluate and prove effectiveness of future novel therapies.

My friend and I both ask you to read this profile with the idea of taking action. Make a difference. We must learn from our mistakes, build on our knowledge, and constantly strive for excellence.

--RGW, Oct. 1, 2001

TESTS, TESTS AND MORE TESTS

On Monday June 11, 2001, my friend was resting in his hospital bed when Dr. Colin Joyo, his surgeon, walked in with the test results. A few days earlier he had opened up his chest to harvest tissue specimens. Now he had come to deliver the news. The pathologists at Hoag Memorial Hospital in Newport Beach, he said, had reached a diagnosis of "malignant mesothelioma."

He had never heard the word before. He had been having trouble with hypertension and shortness of breath since September of the year before, and had even been told he had "congestive heart failure" (CHF). In October he came down with pneumonia. In treating this, his doctors detected a right sided pleural effusion of unknown origin. After conventional treatments, the effusion remained, so in February, his doctors performed a right-sided thoracentesis. The cytologic examination of the fluid was negative for any malignant cells, although the fluid was positive for the presence of "hyperplastic mesothelial cells," a finding that would later prove ominous. The doctors decided to wait and see if the fluid would return.

It did. Chest films in April revealed that the fluid was back. A recommendation was made to consult a thoracic surgeon for a biopsy to find the cause of what had become a partially collapsed lung. That's when he was referred to Dr. Joyo to reevaluate the working diagnosis of CHF and/or pneumonia. The working diagnosis was about to change.

NODULE FOUND DURING SURGERY

On Friday, after his surgery, he had been warned that his problems were bigger than CHF or pneumonia. When he regained consciousness, his wife explained what she had learned from Dr. Joyo. Dr. Joyo had found a large number of "nodules" spread about on his diaphragm. Dr. Joyo dissected several specimens from the lung, diaphragm and pleura. In addition, he insufflated talc in the pleural cavity. According to his wife, Dr. Joyo didn't like what he saw, but was going to defer his final opinion until after he received the pathologist's report.

The gravity of the "new" diagnosis did not hit him until later. Nowadays, it's easy to be lulled into a false sense of security about cancer. We tend to believe that there's no cancer that modern medicine can't beat. So, at the time, that Monday morning when Dr. Joyo dropped his bombshell, his only concern was how soon would he be able to schedule treatment and get on the road to recovery. Dr. Joyo handed him a set of color photographs taken during the surgery (see photograph on the right). The photographs showed sections of his diaphragm and chest wall. He could see with his own eyes a smattering of white, stringy, barnacle-like bumps that were imbedded on top of his diaphragm. Surely there had to be a way of removing these trespassers.

"YOU'RE AN EDUCATED MAN - YOU'LL FIGURE IT OUT."

Dr. Joyo quickly rebutted that can-do presumption. His message was short but decidedly unsweet. "This kind of tumor is very difficult to treat. You need to go and see Dr. David Sugarbaker in Boston." Dr. Joyo admitted this tumor was beyond his expertise. Dr. Sugarbaker, on the other hand, was a thoracic surgeon who specialized in mesothelioma. His mind began to pop with questions about treatment options, protocols, clinical trials, survival statistics, cures -- but before he could pick his doctor's brain, Dr. Joyo ended the brief meeting with this oddly flattering prediction: "You're an educated man; you will figure it out."

The cancerous cells are the white nodules

My friend was an "educated man." He had learned from his father at a young age to seize the day, to pursue knowledge like a hunter, and to avoid easy answers. These lessons became a way of life for him. After graduating with a bachelor's degree in anthropology, he had worked his way up the corporate ladder in the computer software industry to the top. He was now a program manager for a software company. When not managing his company or providing for his three daughters, he had made time to write a science fiction novel. He played drums in a rhythm and blues band. He was an amateur astronomer and charter member of the Carl Sagan planetary society. On top of all that, he collected jokes like a little kid collects bugs or trading cards. He knew when to play, and when to work, and more importantly how to do both at the same time.

SURVIVAL STATISTICS NO LAUGHING MATTER

But there was nothing playful or funny about what he learned about mesothelioma when he left the hospital and returned home. He and his wife and their three daughters huddled in front of his computer, punched in the words "malignant pleural mesothelioma" -- and began to read, focus and assimilate. Within a few minutes, he had learned the devastating truth that mesothelioma was considered "incurable." Within 15 minutes, he had found the survival statistics and learned that an aggressive, multi-modality approach offered the best hope for long term survival. Within 30 minutes, he learned that there were only a few doctors who were brave enough to treat the cancer. Within 45 minutes, he had resolved to learn everything there was to know about this insidious cancer. Within an hour, he had already begun making contact with Dr. David Sugarbaker in Boston, and was printing out the contact data for Dr. Robert Cameron at UCLA and Dr. Dan Sterman at the University of Pennsylvania.

He intended to be "one of the lucky ones." But to get there, he realized it was going to take the courage of a pioneer, the perseverance of an athlete, the patience of a birdwatcher and the indomitable spirit of an alpine mountaineer.

mesothelioma DIAGNOSIS CONFIRMED

This early in the game, the family was still holding out hope that perhaps the tumor was misdiagnosed. They had been advised that Hoag Hospital had sent the biopsy specimens to the Mayo Clinic in Scottsdale, Arizona for a second opinion. Unfortunately, a few days later Dr. Joyo's office called with the bad news that the pathologists at Mayo had confirmed the diagnosis. The fight was on.

He arranged to fly to Boston to meet with Dr. David Sugarbaker on July 10th. He only met with Dr. Sugarbaker for a few minutes, as the doctor had to leave for an emergency procedure. He spent the next few hours with Dr. Michael Jaklitsch, who advised that he was a good candidate for the famed tri-modal therapy regimen. Dr. Jacklitsch recommended the extrapleural pneumonectomy (EPP), during which the procedure they would administer heated chemotherapy. Within 45 to 60 days of discharge, they would then radiate the incision marks to reduce the risk of tumor recurrence.

DR. JAKLITSCH IN BOSTON RECOMMENDS TRI-MODAL THERAPY

He was sure that his tumor was "early stage." Although Dr. Joyo had not biopsied any lymph nodes, Dr. Jaklitsch was confident that the lymph nodes were negative, so confident that he saw no need to test the lymph nodes for disease. Dr. Jaklitsch advised that the biggest risk mesothelioma patients faced after surgery was recurrence of tumor, since you could fit a million malignant mesothelial cells on the head of a pin, and it was virtually impossible to record a 100% kill rate using the best techniques by the best surgeon. In an attempt to delay if not eliminate the recurrence risk, Dr. Sugabaker's team was experimenting with heated chemotherapy which they inserted into the chest cavity after removing the lung, diaphragm and part of the mediastinum. The idea was to take a two-pronged attack on the tumors -- if the heat did not kill the cancer cells (human cells, both "good" and "bad" can only tolerate so much heat), the chemotherapy drugs would. Although an elegant idea, the therapy had neither been rigorously tested in any clinical trials nor reported on in the literature.

GENE THERAPY RULED OUT

Naturally, my friend, who continued to feel relatively robust, was not excited about giving up his right lung and other body parts. He was also concerned about the risks of mortality and morbidity stemming from the radical nature of the operation itself. He decided to inquire about gene therapy. He contacted Dr. Dan Sterman at the University of Pennsylvania. He learned that the gene therapy protocol was not recruiting mesothelioma patients at the time. Dr. Sterman also indicated that even if the protocol were open, he would still urge patients to pursue the surgery/chemotherapy/radiation route first.

The issue now was whether he should choose the EPP or a pleurectomy / decortication (P/D), a procedure in which the surgeon would attempt to remove only the tumor and the surfaces adjacent to the tumors, without dissecting the entire lung and diaphragm. He set up a meeting with Dr. Robert Cameron at the UCLA Medical School in Los Angeles on July 16, 2001.

DR. CAMERON ENDORSES PLEURECTOMY

Dr. Cameron advised that the P/D was less intrusive, safer, and would achieve results that were equal to or better than the EPP [the mortality rate for EPP patients was 6% or greater, whereas the mortality rate for P/D patients was about 1%]. He emphasized that neither he nor Dr. Sugarbaker could offer a cure. In that sense, since neither procedure offered a probability of a cure, both were considered "palliative" (i.e., "serving to relieve, ease or alleviate, without curing") -- a term which hardly inspires hope for a young man shooting for a cure.

After looking at the CT films, Dr. Cameron expressed concern about what appeared to be enlarged lymph nodes. Dr. Cameron generally does not operate if there is lymph node involvement; instead, he urges the patient to undergo chemotherapy first, as research shows that the order of therapies (i.e., chemo first, surgery second) is critical in reaching maximum survival. Dr. Cameron was prepared to operate, but first he wanted to schedule a mediastinoscopy so he could biopsy his lymph nodes to rule out metastatic disease.

SEARCHING FOR SURVIVAL DATA

The more you learn the less you know? Not exactly. He continued to scour the literature for articles that compared the survival data for patients who elected P/D vs. EPP vs. Simple Pleurodesis vs. Chemotherapy only vs. "Watchful waiting." The more he looked the clearer it became that there wasn't any hard and fast data on this critical question. Despite mesothelioma's long and ugly history in this country, there was no nationwide patient registry that doctors and patients could utilize to compare therapies and their respective outcomes. There had never been a large, randomized clinical trial for mesothelioma patients. Every hospital operated as an isolated fiefdom, with each offering it's own protocol. It was very difficult to compare one therapy over another, as each doctor's opinion was not anchored by a universal "standard of care."

He read about a speech by Dr. Karen Antman who reported that the median 5 year survival for mesothelioma patients who chose P/D fared better that those who elected the EPP. He also read her disturbing conclusion that the EPP patients survived only a few months longer than those who simply opted for the palliative talc pleurodesis. He was convinced that he was "one of the lucky ones." His youth, vigor, and epithelial cell type, plus his will to live contributed to his optimism. He did not, however, know for certain that his lymph nodes were negative.

ASKING THE TOUGH QUESTIONS

Medical science had helped him define his diagnostic status, but now he needed guidance in choosing the best treatment plan for him -- a 51 year old male, epithelial cell type, (probable but not confirmed) negative lymph nodes, post-talc pleurodesis, minimal symptoms. He fired off questions to both Dr. Jaklitsch and Dr. Cameron, asking them to send him data on the percentage of their respective patients who were alive at two, five and seven years from the surgery. He posed the pivotal questions. What percentage had recurrence, and at what interval from the surgery, and where did the recurrence occur? How many patients with recurrence had adjuvant chemotherapy and/or radiation? What exactly was "a negative margin?"

He needed assurance that whatever treatment regimen he chose, it would offer his best chance for long-term survival. He was, in his words, "prepared to choose a more aggressive strategy in exchange for a realistic shot at a curative outcome." He instinctively shunned any option that fell under the "palliation" rubric. He was prepared to go the distance.

There was, in his mind, one major complicating factor. At the Hoag Hospital, his surgeon had performed two wedge biopsies of his right lung. He was concerned that the procedure may have inadvertently opened a pathway for the tumors to invade the interior of the lung itself. It seemed logical, therefore, that the best way to eliminate this risk was simply to remove the lung. This argued in favor of the EPP. Dr. Cameron, however, assured that he would be able to extricate a thick portion of the lung adjacent to the biopsy incisions. In the vernacular, he would be able to leave a "clean margin."

WHAT EXACTLY IS A "CLEAN MARGIN?"

The conceivable wedge biopsy risks led to a discussion on what exactly Dr. Sugarbaker meant when he wrote about leaving "negative margins" in his post-EPP patients. The "margin" for an EPP is basically the heart sac, soft tissues and the chest wall, which consists of muscle and bone -- not exactly the kind of surface that can be scraped clean. There is no diaphragm, which is replaced by a Gortex patch in an EPP, and much of the walls of the mediastinum are removed. Every surgeon is of course proud of his technique, but the architecture of the chest cavity and the diffuse and microscopic nature of the cancer do not lend themselves to "clean" margins, as the same surgeon would have to agree that mesothelioma cannot be whipped by surgery alone. The margins may be "clean" to the naked eye, but teeming with tumor cells through the lens of a microscope.

The premise for Dr. Cameron's P/D approach was that in those patients without lymph node involvement in the lung itself is uncompromised by the tumor and should be preserved. Granted, P/D patients do experience loss of lung function, but if they develop pneumonia or tumor recurrence in the other lung (which happens in up to 50% of all surgical patients), the extra capacity afforded by the preserved lung would prove vital in preventing suffocation.

DR. CAMERON ADVISES LYMPH NODE BIOPSY

Regarding his candidacy for surgery, Dr. Cameron agreed with Dr. Jaklitsch that he was an excellent candidate, but only if the lymph nodes, which appeared irregular to Dr. Cameron on the CT scan, were negative for tumor. It was standard procedure for Dr. Cameron to rule out lymph node involvement before operating. Dr. Jaklitsch called to reassure him that their data indicated that positive lymph nodes did not necessarily mean there would be no benefit from surgery and that life extension was still better with surgery than doing nothing. Brigham and Women's Hospital would continue to offer EPP and to offer the trial, even if his nodes were positive.

THE GRIM STATISTICS

Regarding survival data, neither Dr. Cameron nor Dr. Sugarbaker's team could point to timely, reliable, published statistics. Both reported having patients who have survived 7 years from the date of surgery. Dr. Cameron offered his summary of the survival numbers, as follows:

• Talc Pleurodesis only -- nine to 12 months (this means the average person has the disease progress to death by this time);
• pleurectomy / decortication -- 17 to 18 months; and
• Extra-Pleural Pneumonectomy -- 18 to 20 months.

Dr. Cameron cautioned, however, that the statistics don't tell the whole story. The EPP + chemotherapy + radiation regimen was not for everyone. Only a certain patient profile was eligible , i.e, relatively young, early stage, negative nodes, epithelial subtype. Just to be able to actually complete all stages required incredible strength. The published data from Brigham and Women's only included patients whose surgery went to completion and therefore completed all three prongs of the protocol. Patients who entered the trial but whose tumors proved to be un-resectable were not included in the statistics. And there's always the quality of life issue for the survivors -- it's not exactly easy to put Humpty Dumpty back together again after such a radically traumatic surgery, which often gives rise to secondary infections and chronic pain.

Dr. Jaklitsch sought to put Dr. Antman's unfavorable comments regarding the EPP in perspective. He credited her with encouraging Dr. Sugarbaker to begin the EPP at Brigham and Women's, but felt that the first two years of experience with the EPP had colored her perception of the procedure; the mortality and morbidity statistics were higher during the first two years, but had fallen afterwards. At the time of her experience with EPP, the multi-modality approach was in its infancy stage -- the surgeons and nurses were still "learning the ropes."

The surgical technique had improved and, unlike the earlier tri-modal approach whose results BWH had published, the timing and quality of the chemotherapy therapy had changed. The protocol offered to him (i.e., EPP + heated intracavitary chemotherapy wash + radiation) was experimental. The regimen was interesting, perhaps evenpromising, but the lack of published data certainly was not reassuring. Dr. Jaklitsch advised that they were in the process of assimilating the data using the heated chemo and it should be ready by Christmas, 2001. He indicated that the results certainly were at least as good as their previous results and did not represent an increased mortality risk or a poorer result.

SO MANY QUESTIONS, SO FEW ANSWERS

He was now confused. Here were two first class hospitals offering widely competing viewpoints. Dr. Cameron wanted to preserve the lung, Dr. Sugarbaker's protocol necessitated its removal. Dr. Cameron did not recommend post-operative chemotherapy unless and until a) there was a promising agent available and/or b) the tumor had recurred, as evidenced by CT scans taken every three months from the date of the operation. Dr. Sugarbaker absolutely mandated chemotherapy, not post-surgically but during surgery, using a technique that had not yet been certified by the FDA as safe for all surgeons to use.

But he was willing to "push the envelope." If both procedures were guaranteed to leave stray malignant cells behind in the chest cavity, wouldn't it be prudent to try to swish around an agent that by virtue of its cytotoxic and/or thermal properties had a chance to kill those bad cells? Sounded good, but after the lung, diaphragm, pleurae and part of the heart sac/mediastinum had been removed and/or replaced with synthetic patches, would "swishing" around a hot soup that included malignant cells result in leakages that would inevitably spread the tumor to the abdomen or elsewhere?

EXPERIMENTING WITH HEATED INTRACAVITARY CHEMO

And how do we protect the good cells from the toxic heat? The normal body temperature is 37 degrees Celsius. It's not clear what the temperature of the heated chemo should be -- 42.5 C? How do we maintain that temperature consistently throughout the chest cavity? The heart is like a sink that will grab and distribute the heat to the rest of the body through the circulatory system. So it can absorb the heat shock, but what about the rest of the chest cavity? Have models been set up in which thermometers have been placed throughout the chest to measure the actual temperature at key spots to make sure the heated fluids were not too hot or too cold? A stream of endless questions, each provoking a new stream of ponderables. No easy answers.

As my friend put it, "it's not the surgical procedure that scares me, it's what's left behind after the surgery" -- the millions of tiny microscopic malignant cells that thirst for eternal life. Radiation has not proven effective, nor has systemic chemotherapy. Despite the experimental nature of the heated intracavitary infusion, he was willing to run with it. He was ready to run, but again he ran into another brick wall. The trial at Brigham and Women's had FDA approval, but Brigham and Women's had changed the drugs, and was forced to go back to a phase I trial, which meant more delays.

CONTACTS EPP PATIENTS, COMPARES NOTES

With a dearth of published or even pre-published data, he found himself in the cockpit, at the controls, flying at night without any formal aviation training. He was forced to rely heavily on instinct. He began calling other mesothelioma patients from Brigham and Women's. What he learned both encouraged and discouraged him. The younger patients who survived the radical EPP told him about a slow, painful and miserable road to recovery. Some, however, were still cancer free. Other patients, including a 38 year-old patient, told him about qualifying for the surgery -- which raised their hopes and dreams -- only to have the operation aborted mid-stream.

The more patients he spoke to, the more he read, the more he worried about whether he really was a good candidate or whether he was being over-sold the availability of tri-modal therapy at Brigham and Women's. He assessed the situation as follows:

What we have going on in Boston reflects a willingness to operate on even some marginal cases, not always as part of the clinical trial but as a form of treatment. The ethics of that are something we can debate till the cows come home, but the bottom line is that Dr. Sugarbaker, by accepting marginal candidates and predicting a favorable outcome, may be giving all of these patients unwarranted cause for optimism. It's a tough situation. I don't know which is harder, being told you have a chance when you don't or being told no one can help you when there is a slight chance that they might.

LEANING TOWARDS EPP, BUT CONSENTS TO ANOTHER BIOPSY

He was leaning toward Brigham and Women's, but agreed with Dr. Cameron that he ought to have his lymph nodes evaluated. On July 16, he underwent another surgical procedure (the mediastinoscopy), which required an incision at the base of the neck and the insertion of a hose, equipped with a camera and pinchers, into the trachea.. A few days later he heard the good news that all five of his lymph node biopsies were negative for tumor. He was indeed early stage -- another plus for his prognosis. He also learned that the pathologists at Brigham and Women's had confirmed (for the third time) that he did indeed have mesothelioma of the epithelial cell type.

Although mindful of the negatives, he was not distracted. He focused on the facts of his case -- compared to most, he was not in dire straights. His pain and shortness of breath were not acute. His lungs continued to function, after his pneumothorax had healed. He was still able to swim in his backyard pool and ride his bike around the neighborhood. And his optimism remained strong.

CHOOSES THE EPP -- "best shot for curative outcome"

After weighing all the pros and cons, he chose the EPP. He reasoned that Dr. Cameron's approach seemed purely palliative.

I felt that Dr. Cameron's aim appeared to be prolonging life in the expectation of finding some other curative procedure in the future. Dr. Cameron is careful not to promise something he cannot deliver. Sugarbaker is more vocal about shooting for a cancer free result from his tri-modal treatment. As few of them as there are, those long term survivors of Sugarbaker's surgery offer hope for those of us who have favorable indicators.

To use a sports analogy, I am not the kind of person who will choose a nine yard play when I need a first down and given the options open to me, I simply don't have sufficient evidence to convince me that there is any benefit to P&D over EPP. Both are extremely severe surgeries and both offer only slim chances for survival. Given what I know today, I believe I have at list twice to three times the chance to survive this cancer with EPP as I do with P&D.

It was settled. He and his wife would fly to Boston. He had arranged to go under the knife in the week of September 17th. He was anxious to go forward. He understood that he could not "diddle" about while his tumors grew stronger. It had already been nearly three (3) months since his diagnosis and he would not remain "early stage" forever. He was ready to go, but then something inexplicably horrifying intervened. On September 11, terrorists had skyjacked four jet planes, including two jets that had been launched from Logan Airport in Boston. In the aftermath, commercial flights were cancelled and Logan Airport had been shut down for at least a week. He would have to wait.

AFTER DELAYS, SURGERY SET FOR MID-OCTOBER

As of this writing, he is scheduled for surgery in mid-October -- fully four months after his diagnosis. Throughout the ordeal, he has shown a remarkable detachment from the horror of his predicament. He does not dwell on the negatives. He has been staying busy. Disappointed that the medical community, after 50 years, has never attempted to build a patient registry or database in order to compare the merits of particular treatment options, he started his own database.

My friend was also writing a book for cancer patients, which he artfully sprinkled with humor and silly cartoons. He is a firm believer in the salubrious effect of laughter. As he wrote in the book's prologue

I have always laughed. Laughter is the window to my soul and I laughed at myself more often than I did at those amusing things that happened around me. You can imagine my delight when medical science confirmed that a hearty laugh is excellent medicine for what ails us. I strongly believe that this should apply to cancer too . . . ."

AUTHOR DEDICATES PROFITS TO MARF

Writing has also been therapeutic for him. Just recently he published his first novel, a provocative science fiction thriller about an elite corps of soldiers who teleport into the future to combate alien invaders, only to be captured and used as gladiators (see synopsis below).* He wrote the book in about one year. He dedicated the book "to all those afflicted with Malignant Mesothelioma, past, present and future. It would be wonderful if the miraculous medical technology of the Crystal Refuge were already available today."

Seizing the opportunity to make a difference for future mesothelioma patients, he has also pledged to donate a percentage of the book's profits to the Mesothelioma Applied Research Foundation (MARF), a non-profit charity whose mission is to eradicate mesothelioma as a life-ending disease. Like many of us, he is deeply disappointed at the lack of funding this disease has attracted, relative to other forms of cancer. He has vowed to help MARF raise both awareness and dollars so that the amount of money the government allocates to mesothelioma research at least comes close to approximating what it spends on a couple of cruise missiles.

HUMOR AND DIGNITY

Recently, as we prepared for his deposition, he asked me what the appropriate attire was. Since we were taking his videotaped deposition in his home, I suggested he dress casually -- certainly no necktie. Well, on the morning of his deposition, he greeted me at the door wearing a big smile and a presentable tie with an interesting pattern of little snowballs against a dark backdrop. I looked closely and grinned: the snowballs were none other than Luke and Leia, his loveable Bichon Frise pets. He was also wearing what looked like an apron. "What's that?" I asked, pointing to the garment. "It's an apron," he said without apologizing. "I've been baking chocolate chip cookies and pound cake all morning." I just shook my head, amazed. "Hey, just because I have mesothelioma doesn't mean I have to lose my sense of humor, or my good manners. Defense lawyers got to eat, too!"

Yes, he has chosen to try to stay positive. But he's human. Humor, hope and optimism help him cope with his mesothelioma, but at the end of the day, he still has a monster festering in his chest. What he wants -- what all mesothelioma patients want -- is a reasonable shot at ridding his body of the monster, or at least keeping it at bay. The anguish comes from knowing that despite his best efforts, his good attitude, his intelligence, the malignant beast has "a mind of it's own." The truth about the deadly course of this tumor may not set him free, but it has certainly made him determined to do everything within his power to get more life, and help others along the way.

* The ADAR Chronicles is an exploration of the meaning and purpose of humanity's existence. It chronicles the rediscovery of humanity's nobler purpose after a devastating, but stalemated, conflict with an alien species in 2011. A group of contemporary soldiers are fed into a new invention, the Atomic Disintegrator And Reintegrator (ADAR) in order to be teleported into combat against the alien invaders. They awake 300 years later only to find themselves being used as gladiators in a cycle of death and resurrection. Even though they are seemingly pitted against weaker versions of the alien invaders of 2011, it is modern humans who control the bloody games. Who are the occupants of Earth's only remaining city, the Crystal Refuge? Where did they come from, and what purpose is there to the organized carnage? Why did they abandon all pretense of humanity and justice? What master do they really serve and are they truly free to choose their own fate?

*** POSTED OCTOBER 2, 2001 ***

Dear Readers

An update on my treatments - July 4, 2002

First let me warn you that all the experiences are mine alone. If you are a victim of Mesothelioma and are contemplating treatment, your experiences will likely be different. I don't want to give you the impression that any of us has followed a roadmap to this uncharted place or that we know or can predict what will happen to us.

I had to wait until October 2001 to have the surgery. I chose Extrapleural Pneumonectomy with a clinical trial for concurrent intra-cavitary heated chemotherapy lavage. The chemotherapy drug of choice was Cisplatinum at 200mg per meter squared. The clinical trial wasn't open any earlier and although I was eventually offered the surgery earlier, I wanted to be in the second cohort (group) of three patients because I feared the starting dose of 175mg would be too low to be effective. Had I learned what I later knew about that dose, I might not have done it.

9/11 added a further month's delay since I had to come from California and Logan airport was either closed or handling only limited traffic. I therefore became patient 4 out of that clinical trial and the first one to receive 200mg. As it turns out, I had complications with my kidneys but these proved to be short lived. Those who followed me weren't as fortunate and the decision was made to alter the trial and lower the doses to 125mg, 150mg and 175mg. Only three patients received the 200mg dose and I was one of them.

Surgery took place on Oct 11th but I spent Oct 10th walking around Boston one last time with my wife and daughter. We walked to Boston Common and had burgers at Cheers. I was preparing myself for the fact that my life was about to change forever. I feel it's important to have that understanding going into any treatment for this cancer.

The surgery had been expected to last six hours but took eight and a half hours. After the first three or so hours my family realized that my tumor would be resectable (removable) since the operation had not been aborted. Many people have the misfortune to begin the surgery only to discover that the tumor has attached itself to a vital organ like the heart or the windpipe and can't be removed. Since the tumor had progressed since June into one of the incision sites from my Thoracotomy, I was classified as a stage II patient. No lymph node activity was found, however.

I have no real recollection of the first 48 hours after the surgery. I simply don't remember that time. I had no pain but also have no memory of my time in intensive care. I spent only half a day in the step down care area (four to a room) which is in preparation for being sent to a normal semi-private room.

I was up and walking within a few days after surgery (around day 4 or 5 as I recall). The sloshing about of the liquid in my chest proved to be quite unnerving. I hadn't expected this. Once the lung is removed, the body begins to fill the chest cavity with fluid that eventually jells into a semi-solid. I have been told that over time this jell is replaced with scar tissue. The first week was bizarre though, hearing the gurgling and splashing from inside my chest every time I rolled over.

I did have complications caused by the conflicting disciplines that are involved in such complicated surgery. I was placed on a "heart control" beta-blocker drug called Metoporal (Lopressor) as a matter of routine, but that drug caused edema (swelling) in me. I had noted this on my chart before admission but I guess it got missed or they didn't believe me. My swelling and retention of fluids led them to "believe" I must have a blood clot somewhere. They hunted around with Ultra sound scans until they found a miniscule object in a blood vessel in area of my right heel. The technicians argued in front of me over whether this was some abnormality in the blood vessel or a blood clot. Two votes out of three decided it was a blood clot, but they never proved this to my satisfaction. This led to an argument over the need to prescribe blood thinners. My doctor lost this argument to the renal team and agreed to a mild form of blood thinner but this promptly led to internal bleeding and put me back in the hospital for a further six days after my original release. I received two more units of blood, a cocktail of antibiotics given intravenously and suffered through another week of horrible hospital food while waiting to be given my parole so I could go home.

I didn't like the morphine based medications, which made me hallucinate, and avoided them. However, I also failed to recognize that even pain of 1 or 2 on a scale of 10 can prevent you from sleeping. I didn't sleep for almost 48 hours around day 5 or 6 of the first week until I finally figured it out. Time REALLY crawls when you are awake 24 hours a day. No one found it odd that I was sitting upright in bed for two days, sprawled over my tray table to keep the pressure off my back. It was the only time that the nurses weren't on the ball about something that was bothering me. They were otherwise outstanding.

Once I took the painkillers I improved dramatically and was able to catch some sleep. At no time was I really "doped up" or unable to function and I certainly never liked lying about in bed. I was active from the outset. One part of me that wasn't active was the bowel. Massive surgery with serious anaesthesia medications followed by liquid diets, followed by food that tastes like cardboard, isn't exactly a recipe for a healthy bowel. I had major discomfort for over a week trying to get something moving and wound up double dosing on Milk of Magnesia as well as Colace. This effect also returned during the chemotherapy stage and took constant management with fiber aids to stop it from becoming a major pain in the … oh well.

I was instructed to remain in Boston for four weeks from the date of surgery to ensure adequate response in the event of a complication. Accommodation is a very personal choice and very budget dependent. I personally hated the Longwood Towers apartment for its lack of room and lack of facilities but at $80 a day it was all I could afford. Temperature control was difficult and I found myself being constantly cold. This symptom lasted until May of 2002 so it couldn't have been the hotel but was probably something connected to a missing lung.

I returned home on Nov 11.

I was never on heavy medication. I have been taking one Darvocet at night and occasionally one during the day when needed. This is less than half the allowed dose. Pain is a personal thing. Some people experience a lot of it. I didn't and haven't to this point.

About four weeks elapsed before I started Chemotherapy on Dec 13. My regimen was two to four cycles of Cisplatinum and Gemzar. The Cisplatin was given together with Gemzar on day 1, followed by Gemzar on Day 8 and (supposed to be) on day 15. Day 22 was supposed to be an off day. The cycle repeated every 28 days. I had only two cycles and never got the third dose of Gemzar in either cycle one or two, due to complications.

In my case, chemotherapy was VERY debilitating. I was sick as a dog for the first week of the first cycle and had to have two units of blood plus regular saline to prevent dehydration. I was totally exhausted, barely vacating the couch. I completely lost my appetite and found my sense of taste and smell to be permanently altered. Even now, certain foods don't appeal to me any more, although I once liked them. The nausea was bad enough but I also developed a ringing in the ears called Tinnitus, which hasn't gone away. This is a nerve damage effect related to the Cisplatin and was the principal reason the chemotherapy was cut short to two cycles.

I lost over 35 pounds with chemotherapy. I started radiation treatment a month later and finished it 35 business days later. My treatments were daily and only on weekdays. Radiation was a nuisance due to the need to go every day but otherwise not stressful or painful. I never lost my hair with chemotherapy, which I am told is rare even for a guy who started out semi-bald. But I lost all the hair on my chest and back from radiation. I understand it will take more than a year to make a comeback. Radiation was otherwise not debilitating except that I was very tired.

It takes at least six months for you to begin to have a normal life again. Your daily routine can't really start again until you are clear of the radiation treatments that happen each and every day. I have just passed the eight month mark and have a relatively normal life, all things considered. I go to the fitness club and have played two rounds of golf now. I find myself needing a nap almost every day but I am not wasted or totally exhausted anymore.

My life is between an 8 and a 9 at the moment but most of that shortfall is probably psychological stress related to concerns about the risk of recurrence. Given the track record of this cancer and its nearly 100% mortality rate, living in the moment is paramount. I don't think I will ever be a 10 again because I have no assurance of seeing tomorrow. I can only hope that the treatment course I have pursued has removed the cancer and that by the time there is a recurrence, if there ever is, that new and different treatments will be available to help me beat this.

I thank my wife and daughters for their love and support. I thank my brothers and sister-in-laws for their support and for making the trip to Boston to be at my bedside. I couldn't have done this without them. I thank my friends, both inside and out of the office, for their constant encouragement. I wish to give special thanks to Sharky and Neal and the many members of the Wolf Pack League, whose kindness and generosity filled me with hope and gave me courage when I needed it most.

Update Sept 15, 2002

Hi gangJust finished a 6100 mile road trip of 21 days. It was a milestone (not millstone) of sorts, proving that I can sit behind the wheel of an RV for 8 hours a day without expiring. I drove LA to Toronto and returned by way or Roswell, NM and Carlsbad caverns. Really neat. Aliens and caves, what a combination. Actually, it went pretty well. Pain was under control but I experienced some breathing problems which I tracked down to allergy related symptoms caused by the weeds and plants in the eastern US. Antihistimines seemed to fix that problem so I was glad to find that it wasn't meso related. As of this writing, I have a pile of work to do at home before making my last preparations for a return to work Nov 1, 2002.

Regards

May 3, 2007

On behalf of my family, I am writing with sad news about the passing of my father. He died at home surrounded by his family members shortly after noon yesterday after an almost six-year post-diagnosis struggle with mesothelioma, a cancer of the lining of the lung caused by asbestos exposure. He fought a hard fight and endured multiple complicated surgical procedures and treatments. He succumbed due to complications from a recurrence of mesothelioma that was diagnosed last April. He will be missed dearly by all of us, including his wife of thirty-five years, three daughters and sons-in-law, and his new grand-daughter.

He will be cremated and a memorial service will be held shortly thereafter. For those who wish, in lieu of flowers memorial donations may be made in his name to the Mesothelioma Applied Research Foundation ("MARF"). My father was a patient-advocate and MARF'S Director of Communications as well as their first "Volunteer of the Year" award recipient, an award which will carry on in his name for future volunteers. They are an organization dedicated to funding research for a cure for mesothelioma. Donation information can be found at the following website: http://marf.org/Donate/donate.html Feel free to pass this message along to anyone we may have missed.