By Bob Each | PCRI Helpline Facilitator
Nineteen ninety five started out to be another great year. I had just started my fifty-first year on the planet and life was good. My two girls were in college. My wife had a good job as an intensive care nurse at a local hospital. I was nearing a thirty-year career with the IBM Corporation. We both had a decent income and were investing in real estate and stocks in anticipation of a long and comfortable retirement. Traveling the world and flying small airplanes was going to be high on the list of activities we would be indulging in, when that retirement arrived.
I felt my health was excellent. I skied in the winter months, jogged two or three miles most days, did my forty or fifty pushups, a dozen pull ups, and forty or so sit ups, every day. I always had a slight high blood pressure problem and to offset that, tried to eat a reasonably heart healthy diet as I understood heart healthy diets. Little red meat, no butter, skim milk, lean animal protein, fruit, and vegetables, was the normal diet. I even did the Pritikin Diet, invented by Nathan Pritikin, to keep the old arteries clear. At 5 feet 11 inches, I was a lean 170 pounds and felt wonderful.
As the 1995 months progressed, I noticed a slight change in my trips to the bathroom. Instead of emptying my bladder every 4 or 5 hours, I seemed to be going every 3 or 4 hours. I wasn’t too concerned. I had few friends that were already dealing with BPH (benign prostatic hyperplasia). I felt I was too young to be dealing with any real health problems. In the past, if I had any type of health problem, I went to the doctor, and he helped fix it, or it just healed on its own. My family history showed a mostly long lived bunch with no real cancer or heart problems until they hit the seventy’s or eighty’s.
In early October, I went to see the friendly urologist. He did the usual “finger wave” and blood draw and told me I would be called in the next week with the results. As a week past, I became a bit concerned and called the doctor. A very pleasant lady told me the doctor wasn’t in and she couldn’t tell me the results. After I learned she had the results in her hand, I became “pushy and overbearing.”
Finally, she relented and quietly told me my PSA was over 100. After I nearly dropped the phone, I regained my composure and thanked her for the information. Pat Walsh’s book, Surviving Prostate Cancer, was purchased immediately and read cover to cover twice in the next few days. A week later, I’m in the hospital watching a big white eye pass back and forth over my body and trying to make deals with GOD. Please don’t send me to x-ray. I knew if I went to x-ray things were bad. Ok, the tech said, “you’re finished with the bone scan, but, you have to go to x-ray, we need to check several areas of your body.” Several areas! Good grief, this can’t be happening! To summarize; eight to ten bone mets, a PSA of over 100, and a PAP of fifty plus. An hour later I’m headed back to the doctor’s office, in a total daze.
“We have a miracle for you Mr. Each”, said the good doctor. An injection was given and a piece of paper was handed to me. A half hour later I’m back at my home and proceeded to indulge in a total meltdown. The rage and depression welled up in me to a level I still can’t believe. After an hour, I called my boss and told her the cheery news. She listened quietly and told me to take the rest of the week off to do what I had to do. I felt she had written me off and later learned she had lost her father nine months after he had been diagnosed with the same disease.
The next month was a blur of doctor’s appointments and dealing with massive depression. The more I studied this disease, and the more doctors I talked to, the deeper my depression became. The best longevity guess that a doctor could come up with was; “six months to three years, get your affairs in order.” I’m a happy guy, but this really did me in.
Nobody mentioned I would have any side effects from the drugs. Well, I enjoyed a bunch of them. The Lupron flare, joint aches, extreme fatigue, hot flashes, depression, etc., etc.
In mid-December, I attended my first support group meeting at the Cancer Community Center in Westlake Village. At best I had mixed feelings about the whole process. I was the youngest guy there and the most messed up. I felt like I was talking to my friendly uncles and they really didn’t understand my situation. They were discussing erectile and continence issues and I was thinking at a more basic “lizard” level. My twisted brain was fixated on never seeing my girls graduate from college, never meeting my future sons-in-laws, and never having to deal with those pesky grandchildren. One positive thing that came out of that meeting was a referral to the Los Angeles Prostate Cancer Support Group in Culver City. That was the first of several turning points in this nightmare odyssey.
The L.A.P.C. support group was the largest and oldest P.C. support group in Southern California. Normal attendance was around one hundred people with a sub-group of around twenty men who had very serious disease. That first meeting (January, 1996) I joined the “very serious disease” or “D” group. This group was still much older than I, but, at least, had similar disease and could relate to each other. Additionally, the next big milestone was a presentation by Dr. Stephen Strum (it was a two for one night). At the time, he was the only doctor who seemed to know anything about this disease and how to treat it. And, he was willing to share and teach. Wow!!!
The next morning an appointment was made for the next empty slot on the good doctor schedule. A week later my wife and I are sitting in his office with a couple other doctors and a pharmacist. For the next two hours, every blood test, x-ray, bone scan, and opinion was reviewed and comments made. Additional drugs were added to the Casodex and Lupron cocktail I was on; Fosamax for the bone and calcitriol, a vitamin D analog, which might slow the mutation ability of the cancer cells. At the end of the meeting, Dr. Strum shows me a graph that indicated a five-year survival rate of 23% with someone as advanced as I was. Twenty-three percent!!! WOW!!! That’s 23% more than I imagined!!! I thought it was zero percent. I decided I could do 100% of 23%.
The months are passing. The PSA is dropping. Communication with other men, with this disease, is expanding. Several men have become my mentors. Harry Pinchot becomes my primary “go to guy”. He spent three months in the UCLA Medical Library learning everything he could about the disease soon after he was diagnosed and ultimately, became one of the most informed laymen on the planet. We’re doing dinners before support group meetings, lunches after support group meetings, computer fairs, hikes in the hills. I’m the exercise freak and he’s the genius trying to stuff knowledge into my brain. By now, Dr. Strum has upgraded my drug program to include Aredia, a drug similar to Fosamax, but much more powerful. My PSA is dropping, but the descent had slowed considerably. Month 8 through 12 is a mere 10% decline and the absolute PSA number is still over four. Not a good situation.
Then the miracle arrives. It’s a quiet Saturday morning in October of 1996 and my friend Harry calls. “I have heard of an herbal compound that some people think works well against P.C. Thinking about driving down to Orange County to check it out.” “Wanna go?” “Sure.”
Ninety minutes later we’re sitting in front of a sales type guy and discussing an alternative herbal product. I had spent too much time and money on alternative therapies to believe in these types of things. BUT, this man showed us real data; in vitro, in vivo, and testimonials from the few men who had tried it—men, I could, and did, talk with about their results. A few hours later and $700.00 each, we left with a promise to see the product delivered to our home by the following Tuesday. Standard dosage was two pills, three times a day.
A month after starting on this product, the blood draw comes back with a PSA of 3.0, a full 25% drop. WOW!!!! More drop than the previous four months combined. Increasing the dosage to three capsules three times a day, another month later and the PSA came back at 1.8. Over a 50% drop in two months!!!
Now, I’m going to try really hard to compress time. For the last 15 years, we have kept the PSA below 0.1. I deal with all the side effects from long-term hormone deprivation, but I’m still here. I’ve watched those daughters graduate from college. In addition, one with a law degree and the other with a teaching credential. I’ve welcomed two fine young men into the family as my sons (in-law). Twelve plus years ago those grand children started showing up. Now I have three girls and three boys, totally beautiful and brilliant. Ok, ok- one of them is an adult. We mutually adopted one another and I adore her and they all have about thirty IQ points on me.
The bucket list is long and growing but check marks are increasing also. I made it back into the air a couple of years ago. Almost forty years after I stopped flying, my patient, gutsy, Certified Flight Instructor, signed me off to fly in my own little airplane. It and I are really old and slow but we are in the air together several times a month.
Luckily I have been able to travel the world. Drove sixty miles north of the Arctic Circle. Years later went to the Antarctic, let penguins stomp on my toes, learned territorial rights of 700lb sea lions-I can really exit fast, and will never be a Antarctic explorer. Too cold. Tried to climb Aconcagua (22,838 feet) in Argentina. Crashed and burned at 16,500 feet and had to walk back down, shucks. Visited Iguazu Falls and learned about “moon bows”- night time rainbows. Visited Africa three times. I will never forget the warm, wonderful people, the land and animals. Having a teenage elephant charge your vehicle really ups the heart rate. Looking a lion in the eye from a few feet is beyond scary. Having a monkey steal your lunch in Kenya is not something you see in old L.A.
SCUBA’d the Great Barrier Reef and was awed by the brilliant colors of a King Parrot in Australia. Stalked KEA birds (a large parrot) in New Zealand. If I had a brain, I would have brought a bagel and the silly bird would climb up my pant leg. I looked foolish and would have saved my knees.
Did some dumb things. Challenged a mother moose on a narrow trail in Alaska. Those things are huge and they will not back down when they have their baby close. I became much smarter in record time. It helped to have a dense forest nearby. Tried to play with small Lemon Sharks in Bora Bora. They don’t play but they were nicer than the octopi. Octopi have no sense of humor. Sting Rays are nice. Never chase a barracuda. They chase back.
Explored castles in Europe. The Eiffel Tower at night is beyond belief. And you French folks were all nice. Where did you get that reputation for being not so nice? The KGB in Budapest was not nice. Cost me twenty bucks because we went one stop too far on my metro pass. Still have to visit Southeast Asia and the Amazon, maybe Italy and about a million other things.
I have a bunch of wonderful friends, great doctors, and I love them all. I have lost too many friends to Prostate Cancer. I worry about my grandsons because this disease could be inherited.
For all you prostate cancer survivors; keep moving, keep hoping, keep planning, and keep researching. For you guys that don’t know how to use the internet, shame on you. It’s the greatest library on earth. You can become a mini-expert in minutes. An eight-year old youngster can teach you. Just buy and share some ice cream with them. Get out of the house. Do the best you can. Follow your passion. Join a club! Be around people who don’t have prostate cancer. They are cheaper than a ”shrink.” The airport and the sky are my refuge. There is no disease in either place. It “ain’t” easy sometimes. Trust me I know. Some days I just want to totally “veg” and after 6pm my brain and body do everything they can to forget the world. It’s still out there and it’s an incredible place. Go visit it!