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from
Ben Bunn's Page
Ben Bunn: A Warrior's Journey |
Ben Bunn was a warrior to the end. In this personal account written in October, 1999, he said,
Sometimes this battle feels like I'm a jet fighter pilot with a heat seeking missile on my tail.... I know it's just a matter of time and it's going to catch up eventually... but I keep on fighting... quitting is unthinkable.
It caught him on September 1, 2000. Warriors like him is why we fight this killer. His story is posted here in his memory.
Ben's Story
by Ben Bunn
I have officially been a Prostate Cancer Warrior since October of 1992
when I was 54 years old. In truth I'm certain the battle was going on
inside my body for many years or even decades before that date. The
first PSA blood test, done as part of a routine physical exam in late
1991, came back at 11.5 when the normal range is 0-4. Some things since
then I remember all too well, some others I know must have come and gone
without making any track whatsoever in my memory cells. This story is
some of what I remember.
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October 1992. I remember the call from my doctor saying simply that
the biopsy sample came back indicating "adenocarcinoma of the prostate".
The doctor's simple statement hit like a baseball bat to the stomach
even though it was not a surprise. After the first biopsy six months
earlier did not report any cancer, I had been living in limbo as the
doctor had stated that he believed the probability for cancer was high
even though he did not hit it with a biopsy needle (I've come to
understand the biopsy process as being rather like searching for an
unknown quantity of worms in an apple by probing with a needle).
This biopsy process had been pretty exciting, even compared to the
biopsy done earlier where six needle samples were taken. This time the
doctor took eighteen needle samples! Each sample is taken by driving a
hollow needle into the prostate through the wall of the rectum. The
driving force comes from a gigantic sounding spring -- I know I shall
never forget that very special "twang"!
But now we had a firm diagnosis. By this time my PSA had risen to 19.6.
I did not understand it at that time but PSA over 10 is highly
indicative of CaP (Cancer of the Prostate) and PSA of 20 or greater is
highly indicative of systemic spread beyond the prostate. My doctor, a
urologist, obviously said "let's operate", as urologists are classical
surgeons and they absolutely believe in surgery. As an engineer, I
wanted to know more and shifted into flat-out crisis learning and
cramming. And, as an engineer my view was simply that this machine (my
body) had a bad part and we just needed to find the best way to fix the
broken part... as time has passed I now have a much more holistic view of
illness and healing. At the time we lived in Tucson AZ which has an
excellent medical school with a library open to the public. I guess I
sort of moved in for a while.
What I found was too much information, too many conflicting views and
opinions, and no definitive answers for a curative treatment. I did
learn that CaP is tough to kill and is notorious for coming back even
after the doctor says, "I'm sure we got it all." And, my prognostic
factors were not considered favorable for a cure. A round of second
opinions showed that surgeons believe in surgery, radiation therapists
believe in radiation, and oncologists believe in drugs. But it was the
oncologist who was honest enough to not forecast a definitive cure as the
high PSA, poorly differentiated cell structure and a high Gleason Score
of 7 (an assessment of aggressive tendency) suggested to him that
systemic spread had most likely already begun even though nothing was
evident on bone scans or CT scans.
March 1993. I remember inspecting the cryosurgical equipment in the OR
just before dropping off to sleep. My decision was to participate in a
clinical trial for "cryosurgical ablation of the prostate," a procedure
where the prostate is frozen and left in place, at Allegheny General
Hospital In Pittsburgh. I was especially concerned that cancer was found
in the apex, the lower tip of the prostate; this is an area which is very
difficult to excise cleanly in a retropubic radical prostectomy. And,
there was some suspected potential that the body might produce cancer
antibodies after the freezing procedure and that these antibodies may
scavenge any stray cancer cells.
The protocol for the clinical trial specified that the freezing probes
are inserted toward the upper end of the gland through the perineum
(pelvic floor) for a first freeze and then pulled back for a second
freeze in the lower end or apex where I had known cancer. When I
received a copy of the surgical report I found the words "the entire
prostate appears frozen with the initial freeze and the second freezing
was not performed." My initial reaction was absolute despair and all I
could think of was, "HE'S KILLED ME!" Maybe he did, since later
examination showed the prostate had not been completely frozen, but it's
also possible that the cancer was already systemic... I'll never know. I
did see an attorney to consider a malpractice suit but decided not to
invest the spiritual and emotional energy in an adversarial legal action.
I am convinced that was, and continues to be, a good decision.
January 1994. I remember having to get up from the gurney to go to the
bathroom on my way to the Operating Room for a Salvage Radical
Prostectomy. No surprise, the cancer had come back after the
cryosurgery. In the interim we had moved to Longmont Colorado and I was
receiving care at the University of Colorado Medical School in Denver.
It was a long, difficult surgery as there was significant scar tissue in
the area from the prior freezing. The surgery successfully removed the
prostate and recovery was uneventful in the Doctor's eyes, in my eyes I
came to believe that the surgery failed terribly (as I still had cancer)
and my recovery was miserable. The trip home from the hospital certainly
was eventful: the transmission on the car stripped out in the middle of
Interstate 25 rush hour traffic. The special help people provided to get
the car to the shop and me home to my bed I will always remember.
The catheter came out in a few weeks and I no longer had to drag that
special pocketbook with "the bag" everywhere I went. Incontinence
continued for some months and required several biofeedback training
sessions at an incontinence clinic. Like most prostectomy patients, I
have reasonable control today but always wear some kind of "drip catcher"
in case of sneezes and belly laughs. And, I had become permanently
impotent after the cryosurgery as my nerves did not regrow as does happen
in some cases. Although it's now more than five years later and I've had
several hundred hours of massage and neuromuscular therapy I still have
muscles & tendons which have not fully recovered from the effects of
surgery. Or, maybe it's just "old age"?
March 1994. I remember: no surprise, we didn't get it all! It was
now apparent that the cancer had already escaped the prostate as my PSA
was 1 where it should have gone to zero when the prostate was removed. I
knew then that any systemic prostate cancer is considered incurable but
there are hormone blocking drugs that can delay progression. The basic
idea is to hold it back long enough to die of something else first.
Sometimes that strategy works, more often in higher grade, more
aggressive cancers it doesn't. About forty thousand men die of prostate
cancer each year in the United States and progress in reducing that
number is terribly slow.
I have come to believe that it probably doesn't matter very much which
therapy one selects for low-grade CaP as it almost always turns out OK.
And, I also believe that it probably doesn't matter very much what
therapy one selects for high-grade CaP as it almost never turns out OK.
Maybe that's a little cynical, but with today's medical technology I
don't really think it's too very far from the truth.
Beyond March 1994: I worked my way through several hormone blocking
protocols each of which became ineffective in turn. We had bought some
time but there was a price attached as well. I've lost over an inch in
height, and lost a significant amount of muscle mass, gained some pounds
and grown a bigger set of breasts than most girls I dated in high school.
The hormone blocking drugs all shut off testosterone and that has lots
of consequences. When ever I mention the hot flashes, tender nipples and
pms feelings in mixed company I always get big grins and giggles from the
gals.
By the end of 1997 it was clear that my cancer was well established in
the pelvic skeleton and I had exhausted just about all the hormone
blocking options. The drugs I have not yet used have greater and greater
side effects and are progressively less and less effective, so for now
I'll pass on those. The chemotherapy options don't look so great
either... responses in some cases, usually temporary, and all the
classical negative effects on the rest of the body. Some of the doctors
have recommended palliative radiation as the tumor in the sacrum is
pressing on nerves; this can potentially result in loss of bowel and
bladder control. The tradeoff is that radiation of the pelvic area
generally destroys much of the body's reserve of bone marrow and of
course destroys the normal bone growth and re-absorption process.
There have been countless hours devoted to investigating allopathic,
complementary and alternative options which might either directly attack
the cancer or just improve the body's ability to resist. One reads of
so many people who have had either partial or total remission that I
remain convinced that for some cases there are nontraditional therapies
that work. But, every therapy which works for someone fails for others
and we are quite unable to know in advance what is going to happen.
In the world of complementary and alternative therapies and things that
are technically not "medicine" I have found several options to be of
great value although I cannot claim a cure:
(the list of things which did not have value is probably longer)
** Meditation and Visualization: If there has been a gift from the
cancer it is in the peace I have found in meditation and prayer. In 1994
I trained in The Silva Method, a technique for meditation and
visualization, which has become an integral part of my life. Some have
been able to resolve their cancer or other illnesses with the power of
their mind. I have not found that gift but I have certainly found a
healing and resolution of the anxiety that comes with the knowledge of
impending demise. I believe that is a fair tradeoff. If I can
recommend only one thing to others who may be seriously ill it would be
to learn and practice meditation.
** Body Work: Chiropractic, Neuromuscular Massage, and Reflexology have
all aided in resolving physical difficulties, some associated with the
cancer, some from just living.
** Energy Work: Reiki and Healing Touch are two methods which bring
healing energy into the body and the spirit. This concept is well beyond
traditional physical medicine and science but I will vouch that they make
me feel better than any visit to any doctor has.
** Acupuncture: For close to two years I went twice a week to an OMD
(Doctor of Oriental Medicine) for treatments which generally used more
than 20 needles. I have no regrets about this as I almost always felt
very good after a session... I do believe that my Chi was balanced. But
my cancer was not cured and in fact, I could not perceive any effect on
the growth curve.
** Vitamins, Herbs & Nutritional Supplements: There is great value
here, but there is also great risk with this self-medication. Not
everything 'natural' is harmless. But, having said that, I am thoroughly
convinced that we do need supplementation to obtain maximum health and
resistance to illness.
** Diet: From the ancient Greeks: Food is our medicine and our medicine
is our food. I know that at some point in the future people will look
back on this time as the dark ages of nutrition. We tend to contaminate
our crops and livestock in the fields and then denature and refine our
foods in factories. This is not the fuel we were designed to burn and we
will continue to pay the price in reduced health and chronic degenerative
diseases... yes, like my cancer!
** Sharing & Caring: Very early in this journey I choose to be very
public with my experience with the hope that I might be able to help
others and have gone on to become an activist. I moderate an on-line
mail list for alternative therapies and participate with several other
on-line groups so I have contact with some three to four thousand CaP
patients. I also work with the Grillo Information Center in Boulder
where a volunteer staff provides one-on-one assistance in researching
health issues. The Grillo Center also sponsors the Gary Stahl Lecture
Series on cancer and other serious diseases. I lead an Us Too Prostate
Cancer support group and often participate in a general support group at
the local hospital. Even this story you are reading has been written
with the hope that it might provide support for someone at just the right
time. These activities do provide a sense of contribution and I know my
efforts have made a helpful difference for some people.
** Emotional & Spiritual Support: Last but certainly not at all the
least. I thought I had the full support of my wife as a spiritual anchor
while I committed myself to the battle for survival. It turns out that I
was not paying enough attention to the relationship and my wife found it
impossible to continue... she moved out last June and we are now in the
divorce process. Maybe, if I could understand how and why this had to
happen, then it wouldn't have had to happen... but I really don't think
I'll ever understand. The three children do continue to provide an
anchor and spiritual support for me. These few words cannot begin to
express all that I feel... WHAT AN UNDERSTATEMENT!
Sometimes this battle feels like I'm a jet fighter pilot with a heat
seeking missile on my tail. I turn & jink & drop flares but it's still
there... sometimes I gain a little... sometimes it's gaining. Lately the
missile's gotten really close. At some point I know it's just a matter
of time and it's going to catch up eventually... but I keep on
fighting... quitting is unthinkable. And now, my copilot has bailed
out... a terrible sense of aloneness as I go forward to my eventual fate.
But, without my copilot there is also a new sense of freedom and release
to fight with even greater recklessness & abandon and even greater
commitment to the battle. So it goes on, and on, and on. Maybe someday
quitting will become thinkable...
At this time I think I am having partial success in limiting the spread
of my cancer with a holistic cancer therapy practiced by Dr. Nicholas
Gonzalez in NYC. This is a very intensive protocol which compromises
three primary aspects:
1) Pancreatic enzymes which along with the immune system attack the
cancer cells.
2) Detox & Cleansing routines to eliminate the toxic waste from tumor
breakdown.
3) Diet & Supplements to restore health and balance to the body.
Dr. Gonzalez claims about 80% success for people who will follow his
program. I've been on it for almost two years now and don't appear to
have any soft tissue tumor although the bone mets have increased during
that time. I do know others who have had better success than I have but
I am continuing to work hard at keeping the faith.
In February 1999 I added a proprietary blend of Chinese herbs, called
PC-Spes, to my program. In the first month it reduced my PSA tumor
marker from 415 to 128 and by June it was down to 43. I was very pleased
with this response but at the end of July the PC-Spes began making me
violently ill and I had to stop taking it. With the sudden stop,
Testosterone & PSA shot up and rapid tumor growth squeezed the nerve
branches in the sacrum causing some numbness and loss of bowel & bladder
sensation as well as greatly increased pain level. This is pretty
scary... I was picturing a wheelchair except that it was even too painful
to sit.
I'm now on another hormone blocking drug, DES, which is basically
estrogen. So Testosterone is shut down again and breasts are filling out
again. But, PSA is down to 217 and much of the numbness and pain is
diminishing... life looks better again.
I have been experimenting with a number of "unproven" therapies in
attempts to stimulate the immune system to seek out and destroy the
cancer. Sounds like a reasonable approach but it seems prostate cancer
has a remarkable ability to hide from immune attack and especially so
when it's inside the bones. I continue to be optimistic that something
will surface which along with all that I'm already doing will be
effective... perhaps not a cure but even long term control would be OK.
Sometimes people ask how have I changed and what have I learned in my
cancer journey... it's not easy to condense to simplistic statements.
** I think that people go through life being as happy or as sad as they
decide they want to be. My attitude is one of the few things I have
any control over... and sometimes not.
** It's hard to ask for help... but sometimes that can be a gift to
those who want to help.
There is support available when it's needed; sometimes you need to ask,
but that's OK.
** If you wish, cancer can teach which things are most important in
both your physical and spiritual life. I like the person I have
become much better than the person I was before.
** Even if you have cancer you can still make a difference in the world
and in other's lives.
"How much time do I have?"
"Enough time to make a difference," God
answered.
So this is a journey which doesn't have an end just yet. I continue to
work hard at the things which I think may be helping but I know some day
in God's time (not mine), maybe with the cancer, maybe without, I'll go
home...... and that is just the way it is supposed to be!
Ben
Photos by Jeff Haller,
Longmont Colorado Times-Call |
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| This information is provided for educational purposes only and does not replace or amend professional medical advice. Unless otherwise stated and credited, the content of Phoenix5 (P5) is by and the opinion of and copyright © 2000 Robert Vaughn Young. All Rights Reserved. P5 is at <http://www.phoenix5.org>. P5's policy regarding privacy and right to reprint are at <www.phoenix5.org/infopolicy>.
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