We are so in love and doing what we want with our lives but time has betrayed us. He wants a birthday party; he doesn’t want chemotherapy; he wants to speak with his daughters. He renewed his driver’s license today and doesn’t expect to be around to renew it again. I can’t bear this day. Next week are scans and more news and more reality and this isn’t fair. I shouldn’t publish while I am feeling so bad (but writing helps). He’s still strong without symptoms. We laugh and dance and hold each other through the night. I look forward to being together for many years to come. He has to believe in that potential just as I do.

One of his doctors said the goal was to keep him symptom free and to have him live life and not think about the cancer between three month checkups.’ Richard chuckled, “how can I do that?” My life  is lived in three month increments – waiting for his next PSA reading and not a second taken for granted. Life lived as fully as possible now and forever.

~ Suzanne

Our presentation at the American Psychological Convention in San Diego went well.  All presenters did great work sharing new clinical applications of virtual technology to help returning veterans, adolescents, and many other populations in need.  But much more happened. Suzanne and I had an opportunity to learn some of the latest techniques that are being developed to help people deal with crisis that may occur in their lives and talk with a wide variety of people who stimulated thought.  As a result of the conferences and experiences we had experienced during the last few weeks we have been able to put pieces together to create techniques that can help build resiliency for people who discover that they will be facing a crisis such as a life limiting illness (e.g. Cancer, heart disease, AIDs, etc).

As I wait for my test I’m in a booth next to a mother with a two year old daughter who is about to have a CAT-SCAN.  I can hear them but can’t see them. They don’t seem to be strangers to this treatment. Above the sounds of the Disney Snow White cartoon which comes over the six foot cubicle wall separating us, I hear, sense, feel, and am tremendously moved by the steady reassuring voice of the child’s mother giving them both patience as they wait to be called for testing. I knew she would have toe put to sleep for successful testing.  We have all been waiting much too long…perhaps an hour  longer than the 45 minutes it should have been.   But I’m more concerned for the child and mother than I am for myself.

I hear the child note from the video ” the glass slipper broke”  As a thousand mothers comment ever hour, the mother responds “you are so smart.  I hadn’t  noticed that.”. The mother sounds so reassuring and the child so sweet and innocent. Finally a nurse comes to take them both to the procedural room.  The child begins to cry,. The mother tries to reassure her. “don’t worry honey” she says.  As the little girl travels down the hall, her wailing begins the fade. Then becomes louder. Then is eventually gone.  And as I continue to wait for my turn, my eyes moisten as I wonder what her fate will be.

An hour later my tests are over. I’ll have to wait a week for results.  As Suzanne comes to meet me we pass a beautiful little child in a pink dress asleep on a gurney in the hospital corridor. I knew at once that it was the innocent child I had heard earlier. One more cancer victim. One more human being whose life cut short will flood the hearts of loved ones with tears.

My results came a week later.  The hormones where working but were beginning to weaken.  But they should protect me for more than a year. New treatments were being developed every day.  More than ever I was determined to launch our project in the wonderful time Suzanne and I have together.

~ Richard

Note: this was written two months ago but is only published now.

1. Be hopeful and be realistic.  Critical or life-limiting illness is manageable and there are medical breakthroughs happening all the time.  The collective intelligence of the world can be tapped into.  Take a slow deep breath and remember the resiliency of mind, body, and spirit.
2. Take extra good care of you.  Eat well, exercise, sleep enough, and see doctors for regular checkups.  For some — myself included — it’s too easy to postpone indefinitely.  Bad idea because you’re needed. Remember what flight crews tell us about putting on your oxygen mask before helping the child sitting next to you.  Well maybe this is taking a leap or stretching my point but you get it, right?
3. Consider getting help if the psychological stress is too much.  There are well qualified psychologists and counselors available.
4. Consider integrative medicine practices such as meditation, yoga, or acupuncture.  Remember that all the time — but particularly when we are angry, afraid, lonely, and depressed — that the mind AND body are connected and communicating.  Take a slow deep breath and do something new.
5. Make every minute count.  Don’t take anything for granted. Experience love of others and the world.  Live as fully as possible in the now (present).  This is my “secret” coping style because that’s the time I have with Richard.
6. Remember that you are not alone with your experience.  It may not be a consolation but there are countless other friends, spouses, parents, siblings who are support and care for someone with life-limiting illness.  Consider joining a support group for caregivers.

Well, I never considered myself to be an advice giver.  As a psychologist, I was trained to avoid that role and help others find their own questions and answers.  I make this exception:  please take my advice.

~ Suzanne

For four generations our families have been uniquely close. When our parents were children they played with each other while our grandparents played cards and shared life stories. For two days we all lived with slim hope. Then came final results. No one can be sure, but our beloved friend might live two more years.

Weeks before her cancer was known we had been invited to their house on Squam Lake NH (i.e. Golden Pond). Although we traveled there a few times every year this time would be different. Now that I had advanced prostate cancer that threatened my life, the gift of time with great friends was more precious than ever. Without words we all knew this. Suzanne and I had been handling our situation well. We had begun our projects (including this blog) to help people with critical illness learn about and defend themselves from attacks on their relationships, mind and spirit. Traveling more freely externally and internally Suzanne and I were “walking the walk and living the talk”. And then the universe warped. Two weeks before we went to visit our friends we received unexpected news that a pain in her right arm may be caused by cancer rather than tennis elbow. Instead of a visit focused on the celebration of life, the fear of unknown possibilities loomed deep in our hearts. Running from unlabeled feelings, we shared days together racing over Squam lake in our friends’ speed boat, facing stalwart winds that blew trepid thoughts from our heads. Now and again we jumped into clear fresh waters, enjoyed the bounty of generously ripe wild blueberry bushes and basked on deck with the present. We left with news that our friend indeed had cancer, but probably “only” breast cancer. And then came the devastating call of terminal lung cancer.

First I’m stunned. I find myself unsure of what I’m feeling. Within I sense rage, numbness, disbelief. Intense mixtures of feelings. Thoughts going nowhere. I want to bring comfort to my friends and those who love them. I want them to know we are there for them. But I don’t want to intrude. They need each other now. They must find their way to begin to process this together. But my (and Suzanne’s) lifelong knowledge in psychology combined with decades of close friendship, and Suzanne and my own personal journey to deal with my critical illness may be helpful to them. How much room should we give them? When should we be there? When should we not?

There’s an old expression that says “Man plans and God Laughs.” A better expression is “God acts and Man adjusts”. How well we adjust to the unexpected nightmares that invade our lives depends on many factors, including attitude and determination to cherish and appreciate the amazing journey life offers us. Three days before we were married Suzanne and I discovered I had prostate cancer. In the 2 1/2 years since then we have gone through endless operations, radiation and medical treatments together. We have paid a high price, but we have learned much. As time goes by we will learn more. For now here are the points I wish for our beloved friends who face critical illness to know. This is a blog, so I must make a disclaimer that this advice comes from me not as a psychologist or trained professional, but solely as a very human being who is on a similar journey with critical illness. As such I believe that the sooner these points are grasped, the better.

• Be and / or have an advocate that will see that everything that is medically possible is being done.
• Get help (professional and otherwise) when you or a loved one needs it.
• Critical illness has the power to move you. You have the power to choose the direction you move in.
• Cherish the present. Live every moment fully.
• Accept love. Be able to truly receive as well as to give.
• No one lives forever. Having this reality brought home can result in the desire for and achievement of increased quality of your life. Your ability to experience and become aware of the quality of life can definitely increase though the quantity goes down.
• Critical illness will weaken or strengthen your relationships (e.g. spouse, partner, friend, relatives) and spirits. They will not be the same after critical illness (ACI). You have the power to make choices that will affect outcomes.
• Critical illness will go after your body, mind, spirit and relationships. It may eventually get your body. But you and those who love you can stop it from claiming your relationships, spirit and mind.
• The more successful you are at protecting and strengthening your relationships, spirit and mind, the better you can protect your body from the impact of critical illness.
• You and your caregiver can use the time you have together to soar to new heights of life or to burn in despair. Heaven or hell is within your grasp now. Again the choice is yours to make.
• Critical illness can bring both partners in marriage to unforgettably beautiful heights of love.
• When you first discover you (or someone you love) has a critical illness, whatever you feel or don’t feel is OK. This is also true when you find a condition has worsened. You may experience strange and/or contradictory feelings and thoughts. After a while most of the negative thoughts should begin to subside. Watch out for destructive thoughts that don’t go away, such as extended guilt or blame. These thoughts will not serve you well and must be dealt with ASAP.
• Forgive friends and family that don’t know how to handle what you are going through. Some of the smartest people may say the dumbest things. The thought of critical illness may be too much for many to bear.
• Avoid negative energy, negative people, bullshit and things that waste your time. You (both) owe it to yourself to enjoy and make the most of you life while you have it.
• Think positive. You have everything to gain and nothing to lose. Nourish resiliency.
• Accept that “there is more to heaven and earth….than you or I have ever dreamed of.” (William Shakespeare). An existential awakening at this point is both natural and a magnificent.
• Be good to yourself and those who you love.
• As strange as it may seem, fully enjoy the ride.
• Much more to follow.

~ Richard

His passing presence swept me into another state. I was witnessing a level of human endurance rarely seen. It was utterly magnificent. Before we knew it he was gone. Later I learned he completed this rugged 100 mile endurance race at an average speed in excess of nine miles an hour.

The next morning we went down to the high school track to witness the other runners who managed to complete the race by running through the night. Every person who went through the finished line had an amazing story announced by over a loudspeaker. The first woman I saw dash through had been in an elevator accident a few years earlier and was told she would never walk again. The second person had a different but equally amazing story. And so it went until it was time to go.

Never again will we smugly dismiss the motto of a town (or a person) with ignorant assumptions. As a couple passionately respectful of the role of the human spirit to battle illness and live fully daily, providence nearly ran Suzanne and me down with the lead runner of the world’s greatest endurance race to make its point. Once again the universe reveals amazing presents that run along our paths. By providence lottery or not, I have advance prostate cancer. In the not too distant future, I may have to endure incessant intense pain. I’ve often wondered how I will manage that. When that day comes I’ll think back to this late afternoon walk on the California gold rush trail. And I’ll mine for inspiration to endure from the memories collected today.

~ Richard

As someone who deeply loves someone fighting cancer, I watch out for his mind body harmony as well as my own.  Writing seems to help us and others. In two weeks, we will attend a workshop “Stories Told, Stories Untold” led by psychologist James Hollis. Richard is finding much satisfaction expressing his thoughts and feelings in written words.  But one of the most amazing experiences that we recently had was to be sheltered in a living tree that has lived many, many centuries as witness to human history.  Standing within that red wood tree (in Muir Woods California) was for me — mind and body and spirit in TRUE harmony.

A few days ago, we met someone by chance (or not) who just wrote to us stating ” Everything really does happen for a reason and there is no doubt in my mind that the our meeting was for a purpose.”  He continued with C.G. Jung’s quote:

“As far as we can discern, the sole purpose of human existence is to kindle a light in the darkness of mere being.”

Need I write more?  At least for today?

~ Suzanne

One was a store that specialized in gold panning and mining equipment in the town center. The second was the town motto “endurance capital of the world.” “Oh,” we thought cynically “that must refer to the fact that this town is still around after the gold rush ended more than a century ago.” Photo-1 (4) Little did we know that we were about to discover a mother lode of priceless gems in this historic gold rush territory on this amazing evening one night after a partial eclipse of a full June moon, at the exact same spot where California gold was found and panned, on the banks of the Western river, at the confluence of North and Middle Fork.

We had come to northern California to visit some very special but relatively new friends. Dr. Walter Greenleaf is an amazing human being, entrepreneur, champion of the use of 21st century technology to serve the world, and an internationally renowned executive and leader in virtual technology applications.

His key assistant Ivana Steigman MD and PhD also merits great praise both as a dedicated professional and an exceptional human being. Suzanne and I came to visit as both friends and colleagues and share thoughts and possibilities regarding how new virtual environment technologies may best serve those who could benefit from it. After two days it was decided that Walter, Suzanne and I would visit Walter’s new bride Danusia who had just bought a house in Auburn CA two and a half hours away from Palo Alto. Suzanne and I would drive up that day and Walter would follow after dealing with business the next morning.

As we arrived into town we spotted a pioneer gold rush store. Before proceeding to Danusia’s home we decided to stop for a bite at a building that housed a quintessential conglomeration of California mind body health stores. After a quick macrobiotic lunch we were drawn to a store that carried healing crystals and more. A professional crystal healing singing bowl, hand held via a curious stem attracted our attention. When we swirled a singular wand around its outer rim it resounded in an extraordinary and powerful all-embracing vibration designed to stimulate the third eye. The object drew us into an amazing conversation with the saleslady…… who we exchanged e-mails with. We bought two singing bowls, one as a house warming gift for Danusia and one for ourselves.We also developed a new relationship with …. Who gave us her only copy of a book she owned about healing relationships, and called us soon after to tell us how happy she was to meet us.

Onward we traveled to meet Danusia, a remarkably shining, spiritual, creative, worldlyand independent woman involved with international consulting projects with major high tech companies that most professionals would envy. After a warm welcome she suggested we all walk her two regal standard poodles on the banks of the Western River and the Confluence of North and Middle Fork, a few miles away. Suzanne and I eagerly put on our Vibrim shoes and climbed into her car with the dogs to our journey’s next stop. As we passed enchanted scenery we learned we would walk on a path along on the high banks of the river where panhandlers flocked to follow golden dreams 150 years before. Danusia parked near a tow-away sign off the road under near a very high bridge. Photo (4) As we walked the dogs down the path we passed signs and tents that announced that we had stumbled smack-dab onto the sole route of the 37th annual 100 mile in 1 day Western States Endurance Run then going on. This is considered the toughest endurance run in the world. The event is so extreme that the 400 participants (who must first qualify and then are selected by lottery) are meticulously studied before, during and after the race to provide data for scientific research applicable to ultra marathon running as well as other stressful conditions. The object is to begin in Squaw Valley at 5 AM and run 100 miles through a variety of difficult terrain to the Placer high school running track of Auburn within 24 hours to get a gold place, 30 hours for a silver award, and no award after that except to know you finish. People have died during this race. Data gathered here has also saved lives of others around the world. And this was not the only high endurance race Auburn hosts annually. Now we understood why the banner of Auburn is “the endurance capital of the world.” But we were about to face an even greater lesson…. one that could serve me well in my darkest hours. (Continued in tomorrow’s blog California Gold Rush (Part II of II)

~ Richard

~ Richard

My guess is that

1.  Women are offered more clinical trials than men.

2.  Men may be more dependent on others to make prostate cancer treatment decisions.

3.  Women are more likely to take the risk of being in a placebo control group.

4.  ALL of the above.

5.  NONE of the above.

I asked Dr. Petrylak about the current thinking regarding immunotherapy clinical trials for men with early advanced prostate cancer.  It seems to me that the earlier the better in strengthening the immune system to fight cancer cells. Wish it were that simple.  Without clinical trials, we don’t know the outcome, particularly the benefits and dangers of using something like Provenge or Prostvac as early as possible after a recurrence and way before the hormone resistant stage.  A week earlier I posed this same question to Richard’s trusted oncologist who also wants the evidence but sees the potential of this strategy.

Interestingly, Richard’s doctoral dissertation was on the effects of positive and negative reinforcement on risk taking.  Here we are decades later after his research at Columbia University– now faced with decisions about life and death risks.  As for me, if I had a condition where a clinical trial might help, I don’t know what I would do. I’d like to believe that I would consider it — not only for me — but for the impact it might have on generations to come. Right now, I thank all those men who have or are participating in clinical trials because those results may help increase the quality and quantity of the time that Richard, I and others have to share together. Thank you gentlemen.

~ Suzanne

The gracious bride is an old friend and an early business partner of Suzanne. In her fifties, this was her first marriage. Friends and family, most of whom had traveled hundreds of miles to celebrate the happy couple, showered them with warm wishes. The wedding rehearsal event was beautiful in many ways. The southern barbecue (dry ribs and chicken served with sauce on the side) went perfectly with the cold beer, wine and sweet lemonade on that hot southern summer night. The bride is a leading figure in the meetings and hospitality industry, so we all knew that the weekend’s events would be exceedingly special. Conversation flowed among the guests under a huge white tent erected close to a picturesque pond surrounded by manicured acres of tall southern pines. Time drifted softly to the rhythm of sweet southern jazz until it was time to leave, Suzanne and I were looking forward to a pleasant sleep in a decent room after a very full day.

When we returned to the hotel, I asked the night front desk manager what room we would have. In a veritably indifferent voice he replied there was no change. I noticed that there were more than a dozen keys in unused room boxes behind him. Indignant or indifferent, he replied that he was holding those unclaimed rooms until midnight. It was past 11 PM and we were exhausted, so we decided to go to our previously assigned room. We climbed the three flights of steps and walked down creaking corridors to the end of a hallway that slanted sharply down. When we opened the door we found the room was much worse than we had remembered. The room was freezing and the air conditioner appeared to be stuck on high. There was a crack in the bottom of the front door that was large enough for a mouse to enter. There was no available surface to place the bed covers. The sheets were too small for the bed and kept coming off. The only way we could recharge our cell phones was to dangle them into a wastebasket from an outlet near the sink. The room was in a dead zone. The worn and meager early 20th century furniture forlornly reflected the 100 year old history of the room. We began to wonder what secrets were hidden in this dark old space. After an unsuccessful hour of attempting to sleep, we split a mild sleeping pill I found in my toiletry travel bag. Surrounded by unsettling Karma, slowly we drifted away.

In the middle of night I woke up with a startling revelation. “Don’t you dare!” I immediately said in a stern but soft voice. I was facing away from Suzanne in the bed. but without missing a beat, Suzanne responded from her world of sleep “I have to, love.” “Don’t you dare!” I repeated. Suzanne was now slightly more awake than asleep. “You shouldn’t be thinking about such things in the middle of the night,” she whispered. Whoever needs proof that we live in a world full of miracles has it here. I woke from a restless sleep with a totally new revelation that Suzanne has determined to end her life when I die. I had never thought about this before, much less discussed this. In fact I have always encouraged her to keep our love alive when I’m gone by living fully every moment. Suzanne’s sharp understanding of my few odd words and her instant response to my completely unexpected revelation in the middle of the night, without any hesitation, is a testimony for the unexplainable connections that exist at times between lovers. Psychologists have been trying to explain phenomena similar to this for years. But even the physician Sigmund Freud, so practical in his neurological explanations of the workings of the human mind, unabashedly suggested that what may happen at times between people in dream worlds cannot be explained by western science alone. Once again the universe challenges us to see beyond its surface. That night, in a strange room in which we had been promised a view, I awoke to the ugly site of lethal waste festering in a potential future if I did not pay more attention to love’s needs and fears today.

relationships inspiration cancer

The next morning the hotel manager found us an extremely charming room with a clear view of the golf course. Mid Pines Inn & Golf Club really is a charming treasure. We were grateful for his help. I’ll write more about Dawn and Jim’s fantastic wedding weekend later, but for now I’m caught in reflection of last night’s revelation present. Perhaps Suzanne’s response in the middle of the night was simply the result of an odd dramatic thought in a dream. Perhaps the dark karma in that strange room distorted words and vision. As true as that may be, I cannot ignore the terrible view I saw in that room. It’s time to move. More than ever I’m determined to fight for long life for us both.

~ Richard