16th March; 2000
Dear Mrs. vanGerven
I just happened upon your website. I was
probing around on the subject of mesothelioma.
My family and I
have just suffered the loss of my brother to the disease. I just
came back from my parents house where we and one of my brother's
were just talking about Billy. He died at age 59. Its just been 3
weeks now and the reality of our loss is beginning to settle in.
Billy was diagnosed in early October this past year. He had been
having symptoms with his left lung since August of this past year.
Prior to this, he hadn't been feeling well for several months. He
had had a fairly thorough physical exam early in the summer. Nothing
was found wrong. However, early in August , he felt fluid sloshing
around in his chest. A chest x-ray was taken that confirmed this.
Also, scarring in the lung was discovered. This scarring was not
found in an x-ray that had been taken a few years earlier.
However, the pleural effusion became quite severe. Eventually 5
liters of fluid were removed. Cancer cells were found and he was
diagnosed with the cancer. He went into (------ -----)hospital to be
operated on. In retrospect, this was a mistake at the very least.
However, he was told that the cancer was only in one lung and that
he had something of a chance if they could remove the lung and its
lining.
The operation was quite brutal. After the initial operation he
had a lot of difficulty with swelling in the lower extremities. The
doctors figured that they may have caused a problem with his heart
in the operation and decided to go back in and fix the problem.
Also, he had lost his voice, his abiliy to swallow as before and
some sensation in his left arm.
The second operation was through the same incision as the first -
through the back of the rib cage. They worked on his heart to loosen
a certain material that was supposed to support his heart after the
removal of his lung. This material was thought to have been impeding
the normal operation of his heart. They told Billy that the
operation would be necessary to determine whether his "heart
condition" was due to an advance of the cancer or a mistake in the
operation.
However, after the second operation they said there was no
evidence of any spreading of the cancer to his heart and they
loosened the Teflon material to alleviate the problem. There was no
improvement in his condition after the second operation.
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Billy's health continued to decline. He could not hold his food
down. Eventually , he became malnourished and lost a lot of weight.
He was in no condition to receive the chemotherapy that was in store
for him.
After the two major surgeries, he was hospitalized on
three more occasions for malnutrition; malnutrition and difficulty
breathing; and finally malnutrition, difficulty breathing and
vomiting.
In his last visit to the hospital he was there for about 2 weeks
when he finally succumbed . He contracted pneumonia in his last two
days. After a day's long and valiant struggle to breathe, it appears
he completely relaxed for about 2 hours and quietly stopped
breathing.
We have recently begun to discover that mesothelioma is more or
less incurable- and therefore pointless with respect to surgery. My
parents and some of us brothers of Billy are wondering exactly why
he was subjected to surgery. The surgery he underwent greatly added
to his suffering and hastened his demise.
Finally, it was discovered that Billy's body was riddled with
cancer. His remaining lung, his heart, his kidneys and his liver
were all cancerous. However, despite a wide array of diagnostics
before his death, there was no evidence of cancer.
It is bizare to us all that such an array of mistaken diagnosis
took place in this environment.
I don't know whether mesothelioma is so typically difficulty to
detect or if it is untreatable. However, I am wondering whether
Billy suffered unnecessarily as a result of negligence from the
medical community.
You have had a lot of experience with people who have suffered
from the disease. I would like to hear your opinion on this matter.
Please send me an e-mail if you have a chance.
God Bless you in
all your efforts to comfort those suffering from this
disease.
Richard
18th March; 2000
Dear Mrs. vanGerven,
Thanks for your speedy response to my
e-mail. As you mentioned, I too think the doctors acted in good
faith in operating on my brother. My problem, I think, is that I
have heard conflicting information about the efficacy of surgery
with mesothelioma and I have heard that no one survives the disease
for more than a few years. Another troubling thing is the apparent
inability to detect the spread of the disease in my brother's case.
I've heard the term "diffuse" used in conjunction with the
disease. Also, the term "tumor" was used in connection to my
brother's lost lung. They say a tumor was found in the lining of his
lung. I think of a tumor as a cluster of cancer cells. However, no
cluster of cancer cells was visible in the x-rays or MRI's that were
taken. The "tumor" was diagnosed by the pathology done on his lost
lung.
I am lead to believe that, in my brother's case, the cancer was
so "diffuse" that it could not be detected by the imaging techniques
available. The cancer had in fact spread throughout his chest and
abdomen without detection - that is, until the pathologists got to
work.
I think the reason that I have so many questions is that my
parents, my surviving brothers and Billy's family are puzzled and
looking for answers. I'm afraid that we may be looking for someone
to blame for Billy's suffering.
I don't think anyone is to blame in this case. We don't know of
any of my brother's jobs that resulted any particular exposure to
asbestos. It seems to me that we have all been exposed to asbestos
in many casual ways and that any one of these exposures could cause
this cancer to develop. And again, while Billy's diagnosis and
treatment are puzzling, it seems the disease is quite a mystery in
itself.
I guess I would like to be able to convince my family that my
brother was, more than anything, a victim of circumstance. I may be
all wet regarding my impressions of Billy's treatment, but I would
still like to have some confirmation as to whether his treatment was
more or less typical.
By the way, you have my humble permission to post anything I
write to you. Also, I have a wonderful article, that I tried to
share with Billy some weeks before he died, regarding the eternal
meaning of human suffering that I would be happy to send to you.
Billy and I discussed the essence of the article and he responded
very positively to my effort to help and comfort him. I gave him a
copy of the document and urged him, with all my heart, to read it a
bit at a time. He promised me he would try. I don't think he ever
managed to read it and I am not surprised.
My intention was to
give him proof of the theology that I was trying to share with him:
that human suffering is not in vain. What prompted me to find this
document was something he said to me before his second surgery to
fix his heart problem. He was wondering why he shouldn't "blow his
brains out" if it was found that his heart was cancerous. Being by
own brother, this was one of the most heartbreaking things that I've
ever heard. However, my worst fear was not that Billy was going to
die, but that he would even think of hastening his own demise.
In the end, he died a rather heroic death. I am proud of him. I
think the discussion we had about the value of suffering was
infinitely valuable to him. Though Billy was a hard case in some
ways, he never forgot his Catholic roots.
Yours truly,
Richard
Hayes.
19th March; 2000
Hello again Deidre,
I've seen the photos of your husband Thom. He certainly looked
like a delightful man. I was wondering whether you folks were
Catholic. He certainly had a special sparkle in his eyes. You say
that if it weren't for fate, he would have entered the Marist
brotherhood. As hard as it was for him in the end, his training as a
Marist brother must have been a great comfort to him in this darkest
hour.
About my brother's work history, he worked at a small electrical
manufacturing outfit for a couple of years; he was a flight mechanic
in the US Air Force for four years; he worked as professional
photographer for the Air Force for a couple of years; in the
background, he was a professional photographer throughout his life;
for a brief time in the mid 1970's he worked in a foundry (where
they work with molten metal); and throughout most of his life he was
a machinist. I am suspicious about his work at the foundry.
My family (brothers, mother and father) and I were together with
Billy's daughter, Adrienne, earlier today. She is looking into
whether Billy was properly advised by his doctors regarding the
surgery he underwent. In retrospect, he would have been much better
off without the surgeries that he suffered through.
However, I have attached an MS Word document, Salvifici Dolores,
to this message. This is the document on the Catholic philosophy and
theology on human suffering that I tried to share with my brother.
Again, I don't think he ever read the document but I made a
contribution to share the essence of it with him.
Salvifici Dolores was written by Pope John Paul II. It is tough
reading. I've read it about four times. It was meant to be read by
people with some theological training.
I will write to again soon.
Richard.
PS: I did receive the
links that you sent me and will look into them.
Thanks again.
26th March; 2000
Hello again Deidre,
I contacted some of the websites to which
you sent me links to.
The Early, Ludwick and Sweeney website was
very good.
My brother did work on jet fighter aircraft and must
have done numerous "brake jobs" and he also did work in a foundry
for a short while. The foundry, however is no longer in
business.
Thanks for your help, I'll let you knopw what
develops.
Richard.
28th March; 2000
Dear Deidre,
Thank you for your terrific web site. I have
found many answers to many questions regarding my dear brother
Billy's ultimate battle- all from the opposite side of the world.
Despite the recent loss of my brother Bill on the 2/21/00, my family
and I are resting comfortably that Billy is in God's tender mercies.
Until we meet again dear Billy, Hail and Farewell.
3rd April; 2000
Hello again Diedre,
I read the recent update to your web site. I looks just fine to
me. These messages have their original chronological progression to
them. As a further appendage to this progression, I have discovered
that at (------ ------) hospital, where my brother was treated,
there is an established protocol for the treatment of Diffuse
Malignant Pleural Mesothelioma which includes the very surgery that
my brother underwent.
There are statistics with this protocol that confirm it as a
valid treatment. It was one of my concerns when I first contacted
you that perhaps surgery was pointless and that he may have been
mistreated.
I have since discovered, through some of the links
that you have provided me, that my brother's primary surgeon is a
recognized expert in his field. My suspicions that my brother may
have been mistreated, I think, are unfounded.
I tend to believe
that my brother was fully informed as to the risks of undergoing the
most aggressive treatment program at (-------Hospital) - which could
have given him a few years in addition to the time that he might
have had without surgery.
However, as the statistics reveal with the (--------) "tri-modal"
treatment program; not everyone benefits with surgery. Such is the
case of my brother Bill.
The staging process, which determines a
candidates viability for undergoing the tri-modal treatment program,
is extremely difficult and, it appears, is limited to the
state-of-the-art in technology.
Deidre, I would like you to have
this statement for your records or for adding on to my story at your
discretion.
Thanks for all of your efforts to keep an honest and
informative web site.
God Bless,
Richard
Billy,as a young man
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| EULOGY
WILLIAM ARTHUR HAYES
July21st-February21st,2000
Billy's exploits as a youth were legendary in the minds of his
younger brothers.
Just before Billy went into the hospital, he
entertained everyone at the family home with a story about him and
two of his buddies. Let's call it the Thunder Road Story. He had the
whole kitchen full of hearty laughter for a few minutes. This story,
like so many others , had a strange mix of innocence, danger and
comedy and always involved his old friends. The stories of his
exploits were especially funny by the simple and unembellished way
in which he told them. Thank God for the guardian angels of Billy
and his old friends.
Bill was an ever loyal and trustworthy friend. He never
criticized or talked behind a friend's back, treating them as
brothers, always avoiding the hasty word you can't recall.
Bill had a likeability that his fellow workers would express,
saying how helpful he was. One of the guys at work who came to visit
him in hospital was recently heard referring to him as "Dad". He
made the reference several times, saying, "Dad, how are you
feeling". Although he was not Billy's son, he explained later, away
from Bill's room, that Bill had taken him under his wing and shown
him the ropes. "Magoo," as he is affectionately known at work, said,
"I call him 'Dad' because he's like a father to me" That's the kind
of guy Bill was.
However, Billy did have a higher calling as a family man. Soon
after his service in the Air Force he was married. He proved to be a
most loving husband and father. His love for his wife and children
was complete. Billy thoroughly enjoyed the company of his son and
his daughter when they were growing up. Whenever he went anywhere he
always had one or the other with him. More recently, he was looking
forward to watching his only grandchild grow up.
Billy was a hard working and multi-talented man. He was
especially talented in the fields of photography and mechanics with
which he made his living. As an amateur, he was a skilled marksman
and gunsmith. Billy was known for his ability to rebuild vintage
rifles and old motorcycles from what looked to be lost causes into
masterpieces of restoration.
Billy was a natural patriot. He loved and respected America and
our God given rights.
In the end, Bill graciously accepted the sacraments of the Church
that were offered to him. Billy died wearing a Green Scapular. The
willing recipient of the Green Scapular is assured that he will be
reconciled with God. A nurse attending Billy in his final hours
noticed the Scapular and commented, "I haven't seen one of those in
a long time. He'll go straight to heaven".
As Billy's younger brothers, we have never known life without
him. His absence will forever leave a void in all our hearts.
Until we meet again.
Hail to you dear Billy and farewell.
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