Preface -- Please Read and Take Action
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
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
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
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
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 ***
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.
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.