Living with cancer and our sick care system

Blog 1.

This is the first of several blogs I intend to write memorializing my cancer odyssey and my experience with a sick care system that at times performs well but is in many critical ways disappointing, failing to deliver the quality and level of care I and other patients need and deserve.  My HMO is Kaiser and has been for forty years.  On the whole I have been satisfied with the service and acknowledge that Kaiser serves well a large member base at the best price.  Unfortunately, I have found that, especially for older patients, it’s services are limiting and that I would have more options outside the system.  I am about to enter a crucial phase of my treatment and will be testing the system.  If it fails to provide the kind and quality care I have determined is best for the most effective treatment my cancer requires I will be forced to leave Kaiser.  I don’t want to but if I have to in order to survive longer I will.      

I write because I find it therapeutic.  It is also a way of helping others, giving special meaning and purpose to my disease and is one of several reasons I now view my cancer as a gift. 

Living Love with Cancer

May 30, 2011

Peter Douglas

I began writing occasional musings when I first developed cancer in 2004. As with any life-threatening disease, my initial reaction to the diagnosis of stage 4 head/neck cancer was disbelief and shock.  I was nearly overcome by a feeling of being all alone in the world.  After a few moments of confusion, I regrouped and concentrated on what I had to do.  I certainly was not going to let the “Beast within” take me away from the many things I had yet to do with my life.  “Beat the Beast” became my mantra.  My approach involved traditional Western treatment accompanied by occasional acupuncture sessions with a wonderful healer.  I was an active participant in my own healing from the outset.  Fortunately, I had dear friends and family who became involved as effective, assertive advocates on my behalf.  In addition to aggressive treatment, I began writing about my experience, with some philosophical musings thrown in.  I found creative expression extremely therapeutic and never stopped.  I also had the notion I could give purpose and meaning to my suffering by sharing lessons in health-care delivery and life-living thoughts with others that might help them through similar difficult situations.  My attitude was inspired and informed by Viktor Frankl’s seminal work, Man’s Search for Meaning.  I “beat” the Beast then, having endured months of painful, debilitating radiation and chemo treatments.  I learned many profound lessons but not the most critical one:  Cancer, an insidious, relentless disease, will always be with me and it was incumbent on me to drastically change my lifestyle, especially relative to nutrition, and to engage in an active, lifelong practice of prevention.  Like many cancer “survivors”, I was simply relieved to get through my ordeal, put it behind me and resumed life as I had known it not thinking it might come back.  With wisdom born of hindsight, I soon realized I had made a perhaps fatal mistake!

In May 2010, one month after having been declared “cancer-free and cured”, I was diagnosed with stage four metastasized head/neck cancer in both lungs.  My shock was no less acute than it had been five years earlier, only this time my doctors at Kaiser were quite pessimistic and advised I get affaires in order and focus on my bucket list.  But I am an inveterate survivor and aggressive activist not about to give up on life, especially not my own.  My time will come, but not quite yet I hope.  Besides, I am too busy to die. 

Once again I turned to conventional Western medicine for primary treatment, but this time engaged a remarkable Eastern medicine practitioner, Michael Broffman at the Pine Street Clinic in San Anselmo, California.  I also returned, on a regular basis, to my wonderful acupuncturist, Pam Heaton, in Oakland. 

The first oncologist I saw at Kaiser in San Rafael, like virtually all Kaiser oncologists, was a general oncologist not specialized in my unique manifestation of cancer or even lung cancer.  Having learned key lessons the first time around, I sought “second opinions” from specialists at UCSF and Stanford.  I requested but was denied coverage for those medical services even though Kaiser had no such specialists in its system to advise me on both the diagnosis and course of recommended treatment.  I have no doubt my course of treatment would have been different and less effective had I not, on my own initiative, sought other opinions from specialists.  My experience in 2010 mirrored that of 2004 when I had also sought second opinions at UCSF.  It cost me thousands of dollars, out of pocket, for advice from specialists outside Kaiser.  So began my hard lessons with a sickness care provider who I soon realized might not provide me with the kind of care I knew to be necessary for my longer term survival.  It became incumbent on me and my dear, invaluable partner advocates to inform ourselves about alternative and complementary treatments and courses of action. 

I summarize below my observations and lessons learned, and suffice to say am now, one year beyond initial diagnosis and still above ground, upright, and active despite dire predictions.  I am convinced I would not be in the reasonably good condition I am in today had I not pursued and engaged complimentary therapies that my Kaiser doctors did not recommend, some of which they even advised against.  In fact, after my last CAT Scan in March my oncologist recommended hospice!  I should have asked if I ought do that before or after finishing my daily full-time job!
 

Observations and lessons

·        Learning to live with it:  For most who have it, there is no cure for cancer.  It is something we must learn to live with, try to control, and survive as long as possible while maintaining a good quality of life.  I hope for remission but strive for survival.

·        Self-advocacy is essential.  I think it imperative we take responsibility and actively participate in our own healing for several reasons.  Doing so ameliorates feelings of helplessness.  Doctors make mistakes so it is important to pay attention, become informed, ask questions, and insist on answers that are comprehensible and make sense.  Western medicine is corrupted and crippled by corporate control (i.e., the role of Big Pharma, insurance companies, the AMA) and a litigious culture that inhibits integrated therapies, creative thinking and drives good doctors out of the field.  Cost controls often trump best treatment options, including drugs and application of cutting edge technologies.  Unfortunately; you have to track down specialists and appropriate medical expertise because your HMO or sick care provider isn’t going to give you that information (one of the most challenging hurdles is finding the best physician in whom you have confidence).
 

·        Western medicine:  Western medical education and practice promote narrow minded thinking and risk avoidance.  Medical students are not taught to think creatively outside the box.  The focus is on treating the sick and not health promotion through prevention, education, good nutrition and other integrative strategies.  I was shocked by the ignorance and absence of curiosity I found among many doctors.  Despite overwhelming affirmative anecdotal and real-world experience, nutritional and complimentary therapies, such as supplementation with herbs, acupuncture and thousand year old eastern medicine are dismissed out of hand as beyond the doctor’s ken, not approved by self-serving, exclusionary medical associations, “voodoo” or not being “medically indicated” or “evidence based” because they have not been “clinically proven.”  This narrow and exclusionary thinking does a great disservice to many patients who often pay for it with their lives.
             

·        Broken system:  America is governed by a corporate kakistocracy in which greed, insider and self dealing rule at devastating expense to the general public good and welfare.  Sadly, this rule by corporate oligarchy was shamelessly guaranteed by the recent U.S. Supreme Court 5-4 decision in Citizens United.  In the health care field, one need only look at the insidious ways corporate controlled food, chemical, pharmaceutical, insurance and advertising industries promote their narrow, profit-driven enterprises at immeasurable public expense in coin and long-term well being. 

Our way of dealing with health and sickness in this country is regressive and has evolved into a system designed to maximize profit, perpetuate unhealthy life-styles, focus on fixing the sick not prevention, and protect exclusionary practices by pharmaceutical, insurance, health care provider, and medical associations.  Additionally, we have a legal liability system that encourages litigation and consequently discourages innovations in health care delivery and integration of important, beneficial non-conventional treatment practices, including those hundreds, even thousands of years old.  As a result it is left to individuals to inform ourselves and actively resist unhealthy, destructive practices by, among other things, demanding and supporting chemical free foods, clean drinking water, a pollution free environment, health care delivery systems putting people above profit that integrate therapies and approaches shown to be beneficial though not necessarily proven by exclusionary and corporate profit serving criteria.
 

·        Second opinions are invaluable, not only at the diagnostic stage but throughout treatment.  A confounding consequence of this approach can be conflicting opinions, but at least you will have more information on which to base treatment decisions.  Though some may view it as unnecessary and costly redundancy I am convinced it is an essential paradigm promoting failure avoidance.  And when one is dealing with cancer, as well other life-threatening illnesses, success is or should be measured not in terms of achieving a “cure” but in avoiding failure and that requires more information and more beneficial complimentary, integrative approaches not less.
  .

·        Bring a friend:  Never go to doctor consultations alone.  Take one, better two relatives or friends who can take notes, ask questions, ask for clarifications and help evaluate the session afterwards.  You, as the one who is sick, will invariably get hung up on red-flag bits of information and won’t hear what’s said next.  It is helpful if the same person can attend as many sessions as possible to ensure continuity and better understanding of the situation.
           

·        Information:  Avoid information overload and develop effective filters to weed out interesting but unessential information.  Of the many books I read about cancer, most helpful were: Anti Cancer: A New Way of Life  by David Servan-Shreiber;  Life Over Cancer  by Keith Block (Co-Founder of the Block Integrated Cancer Treatment Center – I write more about this remarkable clinic I a future blog); The China Study by Colin Campbell; and The Cancer-Fighting Kitchen by Rebecca Katz.
   

·        Mind-body connections:  As temple of the body, our mind controls and influences much that directly affects our physical and psychological well-being.  Stress is a key driver of illness, including cancer.  Stress reduction is important and ways to reduce it include meditation, soothing visualizations (I like waves washing a white sand reach of beach), exercise (especially Qigong, Tai Chi, and Yoga), deep breathing, expressions of creativity, and mindful spiritual engagement.  I can’t overemphasize the critical role attitude plays in healing.  The body can’t heal if the mind is not an active companion in the cause. 

A positive mind-set during trying times is vital.  It is therapeutic, restorative of body and soul, regenerates resolve to live, helps dispel despair, and inhibits release of disruptive, injurious chemicals into the body.  It generates positive energy and helps keep hope alive.  Whenever demons of doom gnaw at me I immediately shift into mindful offensive mode and displace them with positive thoughts of blessings gifted me in my life.  As part of my own attitude adjustment since my first bout with cancer, I no longer consider cancer “the Beast within” but a gift which I would not wish on anyone and one I would rather usher out of my body with love and gratitude in my heart.
        

·        Support circles:  Another of healing’s helpers is the support function of loving family and friends.  People want to help.  For your sake and theirs, let them.  There are countless ways others can help – preparing meals, organizing records and documents, scheduling, transportation, companionship, a buffer for well-wishers you’d rather not see just then, and conducting research.  In our knowledge and technological age of instant, global communication it is a daunting and almost overwhelming challenge to wend one’s way through this Byzantine medical information world.  Finding someone who is knowledgeable and can help with this aspect of your ordeal is invaluable.  I was contacted by a “medical concierge” who specializes in managing others’ disease who offered his help (Leslie Michelson at Private Health Management” in Los Angeles).  His assistance has been invaluable.  A final word of caution, many mean-well people will recommend treatments, remedies and supplements they think will help.  That may or may not be the case, but you won’t have the energy or resources to track them all down.  Don’t even try.  Rather, refine your information filtration system to identify the essential and most likely to help suggestions.

·        Faith and spirituality are also essential elements of a healing paradigm.  Spirituality is a personal prerogative we all (or many of us) craft and actualize in our lives in unique ways.  No matter our own particular spiritual beliefs, important is that we have one which evokes inner peace, strength and hope. 

Suffering is inherent in sentient life, as is joy and carefree exuberance.  It is what sparked Buddha’s search for enlightenment and was perhaps a major dynamic in Christ’s wanderings during the missing years.  The quest for an antidote is private and personal, occasionally marked by barkings of snake oil sellers.  For many well-meaning thinkers and healers it became their philosophers’ stone.  Each of us knows well pains and scars branded on our psyche by suffering – both our own and that of others, including Mother Earth’s.  As compassionate, empathetic and emotional beings the suffering of others is often more difficult to bear than our own - perhaps because we have more control over how we respond to personal pain and suffering.  However, to help alleviate suffering in others we must first deal with our own in which faith and spirituality play an essential role.  The lengthening shadow of my life has taught many things, the most powerful being coming to terms with suffering and fear. 

My disease has inspired the most powerful spiritual migration in my life.  Through meditation and mindful reflection I have learned to detach from desire, anger, anxiety, worry, expectations and other discordant, distracting emotions.  I moved beyond fear (I call it non-fear) and actualized equanimity in my life.  I have learned to live love with passion and purpose, in the process achieving higher levels of meaning and awareness that embrace and celebrate life affirming, Earth-centered values: Living fully each moment with joy and gratitude in my heart.                                 

Words, concepts, values I associate with my spirituality are love, compassion, joy, harmony, happiness, equanimity, awakening and wisdom.  It is neither purely faith-based (i.e., “blind faith” or numinous) nor intellective (esoteric or academic), though both faith and deep reflection are essential to my perspective and actualizing it in my life.  In this context faith refers to confidence derived from applying in my daily doings lessons rooted in mindful reflection and insights learned over time.  It reflects an internalized set of insights, values, and principles that calibrate the moral, ethical and philosophical compass of my life.  True learning necessarily involves reflection and putting into practice what has been taught through reading, listening, observing and discussion.  Lessons learned obviously influence my emotions, attitude and mindset which in turn shape my actions and reactions to internal and external forces affecting my life.  I consider this the essence of mindful living.

Spirituality is the bedrock of my being, my emotional refuge nesting inner peace, harmony and happiness.  My spirituality is seemingly always a work in progress requiring discipline and practice.  Also required is an acceptance of the beginner’s mind characterized by a deep understanding of impermanence, the importance of “non-self” being (the non-discriminating wisdom of seeing our co-being and interconnectedness with everything else and our belonging to the Universal stream of life), and freedom from confounding fetters of pre-conceptions and perceptions that obscure essential reality, deep truth, purity of vision and knowledge.  This spirituality is informed by many mentors and source teachings:  Buddha and Buddhism, The Teachings of Don Juan (Castaneda), logo-therapy expressed by Viktor Frankl (Man’s Search for Meaning), Christ, Thich Nhat Hanh, Don Miguel Ruiz, Charlotte Kasl, Albert Schweitzer, Gandhi, Kazantzakis, Muir, Thoreau, Dylan, my grandmother, and others. 

My life experiences joined with my evolving spirituality have instilled a profound understanding of the curative, transformational, palliative power of love which means many things to many people.  To me and above all, it means a celebration, an honoring of life-affirming, Earth-centered values marked by compassion, joy, kindness and affection seasoned by equanimity.   

Equanimity is a poorly understood virtue of cosmic consequence.  I internalize its meaning as a powerful reminder of my humble smallness in the stream of life, the impermanence of all things and that every moment is fleeting, precious, and to be cherished.  Understanding impermanence enables us to live more deeply in the present without attachment to past or future resulting in greater happiness and less suffering.  Equanimity, joined with its companions love, compassion and joy, is a predicate for awakening, wisdom and the healing of suffering, loneliness and other debilitating attachments such as fear and preoccupation with ignorance, indifference, human cruelty and myopia.  Equanimity does not mean denial or emotional indifference, aloofness or disconnect.  It does not disable one’s ability to empathize or shed tears of joy, sorrow, and sadness.  Rather, it entails a certain clarity, purity of mind manifested in a condition of emotional stability, tranquility and composure offering safe harbor for enduring loving kindness in trying times.  It is a deep keel on troubled waters: An insight and state of being, not a value, thought or emotion.  Empathetic equanimity is ennobling and enables enlightened, easy acceptance of living in the Now. 

When I speak of “detachment” I don’t mean disengagement, insensitivity or remoteness.  Rather, I refer to a salutary separation or distancing from those mind-mixer thoughts and emotions that cause us worry and needless stress and suffering – fear, anxiety, anger, hatred, desire, despair, inordinate egocentricism, expectations, unforgiving judgmentalism, and debilitating emotional attachment to outcome.  As the Buddha taught, it is this irrational attachment to things and negative, discordant emotions that causes suffering.  When I learned to liberate my being of discordant emotional burdens I experienced a remarkable transformation and an incredible lightness of being.  This detachment or emotional distancing enables me to live mindfully, fully and peacefully the magic of the moment.  I call it mindful existentialism.

·        Meaning and purpose:  As Nietzsche reminded us, “He who has a Why to live for can bear almost any How.”  We all strive for meaning and purpose in our lives which can be found in nearly everything we choose to do if we have the right mind set.  I discovered this truth early in life after first reading Man’s Search for Meaning – a profound little book summarizing Frankl’s remarkable survival-counseling of prisoners in Nazi death camps through logo therapy (the therapy of purpose and meaning).  As he explained:  “In some ways suffering ceases to be suffering at the moment it finds meaning….”  Despite horrific conditions, he helped many survive.  I have read this work several times and now know how it fundamentally influenced my life.  I learned to focus on the “Now” of every moment, every day and to find purpose and meaning in every interaction with other people, other life beings and my environment.  This is how I came to view cancer as a gift and to find meaning and purpose in the journey.

I stopped asking “why” questions long ago when I realized there are no answers to the more profound ones, only our own formulations of how we live our lives with uncertainty and the not knowing.  (Why are we here?  What is the meaning of life?  Is there a god?  Why do the young and innocent die?  Why can’t we know there is life after death?  Why did I get cancer?)  In the end it is “how” we live our lives that matters most, not the stuff we accumulate.  By internalizing and actualizing in our lives enduring values such as integrity, passion, compassion, empathy, love, good will, and respect for all life we transform the “how” into the “why”.  Inherent in this way of living is meaning and purpose and a measure of our life’s journey.  It offers markings by which to calibrate our moral and ethical compass from time to time.        

No matter how seemingly trivial, especially when viewed in the insipid context of materialistic contemporary culture of superficiality and escapism, we can find meaning in what we choose or have to do.  So it is with cancer or any disease.  There is meaning in how we react to and approach our condition.  We can find purpose in healing and our participation in it.  More therapeutically important is meaning and purpose found away from our disease whether in the garden, vocation, avocation, service to people and planet, time spent with family and friends, travels, creative expression, or spiritual quests.  There is ample proof patients do better when they bring passion to some purpose, some activity not connected to illness.
         

Epilogue:  The most obvious, yet important advice I pass on is:  Take care of yourself, stay healthy, adjust your lifestyle and don’t get sick!  In addition, know your health insurance plan - its strengths and limitations.  It’s a bummer when you first find out you don’t have coverage for a certain treatment when you need it or that your options are severely limited. 

If diagnosed with a life-threatening disease shock, disbelief, feelings of being all alone and denial are normal reactions.  The trick is to not allow denial to morph into despair and capitulation.  Take responsibility and know you are not helpless.  Lean forward forcefully into the traces.  You have options, as well family or friends who want to help.  Let them.  Don’t waste energy cursing your lot or asking why.  Search for meaning and purpose in your condition.  Bring your spiritual compass into focus and up to speed.  Celebrate life and be grateful for blessings bestowed.  Carry good will and good cheer into the sunshine and your doings every day.  Remember, laughter and positive attitude heal.  Live mindfully and fully every moment.  Keep hope alive.  Look within, where the enduring light of love, peace and harmony nests deep in your soul.  Live strong the love in your heart.  When the time comes to pass over to the other side, try to embrace that passage with dignity and grace knowing you have done well.