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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.

photo of ben bunn 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.

  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.

Ben with his dog Missey

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.

photo of ben with his grandson on a train

** 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!


Photos by Jeff Haller, Longmont Colorado Times-Call

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