cancerjournal

The nervous, worried, upset system endangers itself.

 The relaxed brain thinks clearly; the relaxed body is more able to fight deadly internal invaders attempting to survive. The immune system has been improved by evolution––the survival of the fittest––to attack and destroy what it does not understand, what disrupts its equilibrium, what is not part of its orderly world. Do not disarm it with your confusion and fears.
––John Roberts

To bear all naked truths,
And to envision circumstances, all calm,
That is the top of sovereignty.
––John Keats, Hyperion, 1820

You are going supersonic straight up, waiting for the airspeed to bleed off so you can reverse on the MiG chasing you and get off a shot before he does. You have eight seconds to wait. What do you do? Wind the clock.
––Fighter Pilot Legend

Ne’er saw I, never felt, a calm so deep!
The river glideth at his own sweet will:
Dear God! The very houses seem asleep;
And all that mighty heart is lying still!
––William Wordsworth, Composed Upon Westminster Bridge, 1802

Old age, calm, expanded, broad with the haughty breadth of the universe, old age flowing free with the delicious near-by freedom of death.
––Edith Wharton, 1862-1937

He who is of calm and happy nature will hardly feel the pressure of age, but to him who is of an opposite disposition youth and age are equally a burden.
––Plato, The Republic, 370? B.C.

  Pleased with the danger, when the waves went high
He sought the storms; but for a calm unfit,
Would steer too nigh the sands to boast his wit.
––John Dryden, Absalom and Achitophel, 1681

Cancer requires equanimity: we need to face challenges with composure and optimism, to remain calm, to maintain control, to rein in our emotions, to avoid overt alarm, and to suppress the internal worry and stress that are counterproductive. We do ourselves unnecessary harm, a form of giving up, if we allow the negative aspects of life with cancer to overcome us. Those emotions have a harmful effect on our physical condition. When we face a great and threatening challenge, when it is all up to our fighting spirit, when we must ignore our fear and maintain our tranquility, we may fall back on our strength of character and face whatever comes with a steadfast heart. No, it is not easy.

Serenity and self-control should dominate the shell of every personality, but should also be a deeper part of our permanent character trained in storms over a lifetime. Our positive demeanor and brave acceptance are rooted deep within, the endless sustenance of our burning need to live on and participate in life. This permanent, unfaltering framework sets the tone for what we are, what we do: it is an expression of our true self, as much a weapon as our spirit. Yet, that impassive core of strength is an assembly of so many things, every version is different. At its heart are our freedom and independence, comfort with self, the lack of wannabe, and a certain amount of distain for the conventional desires and pretensions. We can aspire to this, part of our self-respect; with new battles foreseen, we can construct our own calm within the limits of our own sincerity.

Poise under fire is how we deal with everything, and that is everything. Character is cool, because cool is what we really are, not what we pretend to be. To be really cool it has to be genuine, because phony, copied cool is the most uncool thing we can be. It collapses so easily. That means we have to construct, and then be satisfied with, what we are deep down. Cool, honest folk don’t reinvent themselves, which is not to say that constant self-improvement or changes of direction are out of the question.

This unruffled style and constitution enable our other strengths to function in a stable and positive organism. It spreads to all those around us, who are focused on our attitude and success.  Contrast that to the erratic, wandering, brainless cancer cells; they can be powerful in their collective growth, but are weakened by the evolved, united power of our controlled self-defense. But, of course, deeper at the core, beneath all that embedded repose, there should also be a seething heart bursting with fighting spirit and will to live.

Two days ago, Dendreon announced the successful trial results of their amazing new immunotherapy that can prolong the life of advanced prostate cancer patients. In essence, it removes immune cells from the blood, triggers them to attack cancer tumor cells, and returns them to the fight. It is not a cure, but it prolongs and improves life for some patients, and gives more time for other treatments, or even a cure, to be developed. This is a major advance, after decades of stagnation.

However, the company must prepare its application and do other work before it is submitted at the end of this year. The FDA will then go through a long, careful  process to approve the drug, which is likely in mid-2010, by which time I will be dead.

I used to manage a research company, and I have sympathy for bureaucratic rules and the scientific method. In the year (at best) that all this takes, 28,000 men will die of prostate cancer. Some of them, including me, with advanced PC that has spread to the bones,  will die unnecessarily because they cannot get the Provenge treatment that would prolong their lives.

The FDA approval process is necessary to insure that the trial was done correctly, that the treatment is safe, that it will be used properly, that there are no serious unintended and unforeseen consequences, and so forth. This is essential in managing the flood of drugs and treatments in modern medicine. The FDA has come under attack for conflicts of interest, inadequate warnings, and faulty approval processes. They are gunshy, and a new administrator has come on board.

Why, however, can there not be exceptions in terminal cases like mine? Half of the people in the trial were willing to receive the treatment vs. a placebo in a test; why can't I sign releases and receive the treatment that might prolong my life? What do I have to lose? Can't the well-meaning bureaucracy figure out a way to preserve the trust and reliability it needs while making exceptions to its rules in order to save lives? Are their priorities correct? There are procedures for off-label use and conditional approval in certain situations, but information is sparse so far.

I have an instinctive distrust of all bureaucracies, with a lifetime of experience to back it up. Now, one of them is threatening my life. I have studied the process and there is much I don't know. The FDA is loaded with compassionate doctors and professionals. They have to walk a fence, surrounded by shouting politicians, patients, investors, pharmaceutical companies, lobbyists, journalists, and politically-correct regulators. Somewhere in the midst of all that some common sense is lurking, waiting for someone strong to give it life, so that I can have mine.

I do not let frustration, defeats, or negative thinking affect what I do or think. I am still enjoying every day. I am preparing to start chemotherapy, which will give me more time, possibly a lot. My doctor says I am in the best condition of any patient in the cancer clinic.

Letting go is a normal part of the process of dying that may be managed by the patient. The person may realize, or the doctor may inform, that there is nothing more that can be done to cure; the new objective is to make the remaining time comfortable and to assist in the various mental processes that try to enable a passing in peace and understanding. This may take months, or just hours. In any case, it involves a change of attitude and focus. It does not mean taking down the barriers and wishing for death that will take advantage of no further resistance. It means shifting to attitudes that have been prepared in advance so that the final mental state is what one wishes. It therefore bypasses the resignation of defeat to a new stage of preparation and acceptance.

Letting go may permit a sense of relief, a new peace of mind without the rigor of fight, and a transition to a new kind of hope. We have been fighting long and hard, and may be unwilling to change that, ever. But, our stubborn refusal to accept the inevitable may mean only more painful but useless treatment and further suffering by both patient and loved ones. Aggressive treatment may do more harm, and shorten life, compared to palliative treatment designed to improve comfort. There are choices in a hospice setting when death is certain, even if the timing is not. The fear of dying may prevent a patient from accepting an easier passage. Frank discussions earlier may help in reaching decisions later.

In the broad picture of life, a few more days of aggressive prevention may be less important than a more restful and expected passing. This permits a smoother, less abrupt end that may be better for all. The change to final acceptance may also mean a change in the patient’s needs and preferences. A new silence and solitude may be desired, which may be disturbing to loved ones who wish to continue communicating and expressing love. The best interests of the patient must be seen, prepared for, and followed. It may be that the patient, with full understanding, will lead loved ones to the final farewell.

Our time is measured in quality, not quantity.

Losing time is worse than losing money. The money can be earned again, but the time is lost forever. A rare and wonderful sight is the young person who manages and values time even more than an old person who knows how little is left but lacks the energy and ambition to magnify the treasure of each minute.
––John Roberts

Man has risen so far above all other species that he  competes in ways unique in nature. He fights by means of complicated weapons; he fights for ends remote in time.
––Charles A. Lindbergh

 We cannot put off living until we are ready. The most salient characteristic of life is its coerciveness: it is always urgent, ‘here and now’ without any possible postponement. Life is fired at us point blank.
––José Ortega Y Gasset, The Mission of the University, 1944

 Cancer diagnosis locks our attention on the future, interfering with our need to deal with the present. You will never have a more challenging and rewarding time management problem than in making the best of the time before you die. Those years or months have great value in how we use them and how we view them. A vague perspective forms, but the cold wind swirls the mists.

 Time remaining is finite, but always uncertain, always surprising. There comes a time when we should place less emphasis on the amount of time remaining and think more on the quality of that time. Eventually, a doctor must say: “I can do no more to increase the quantity of time remaining; I can only try to preserve the quality of life and minimize suffering.” Care changes from treatment and cure to palliative recognition that there is little more to be done except make remaining time comfortable during the final journey. A different attitude must govern thoughts.

Time management is more than cramming as much work as possible into the limited time available. True, we waste a lot of time in our ordinary lives, and should learn to manage what we do so that the important things get done. When we do something can be more important than how we do it. Doing things at the right time changes the effect. Good things done at the wrong time can be a great waste of effort. Sometimes we may feel the need to rush into valued activities while they are still possible, but we may also discover the important therapy and happiness of just relaxing and enjoying the pleasures of long walks, good books, loved ones, children, and nothing but positive thoughts and light activity. We are slowly building an edifice of peace and understanding from many materials.

The value of time varies as the result of symptom fluctuation, erratic remission, and the waning effectiveness of treatments. There may be much uncertainty about the future. One must not allow emotions to fluctuate between extremes as news and feelings change. Maintain a steady, optimistic course, fitting together hope and realism and the construction of courage and acceptance for final days, whenever that may come. So many cancer patients become long-term survivors, with extended remissions or cures, that there is no sense in creating unhappy days with pessimistic attitudes along the way. We cannot flinch under fire.

Some people with cancer prefer not to contemplate death, thinking it may weaken the fight or cause despair––Ignore it and it may go away. It is not, however, the opposite of a positive attitude. Regardless of your effort to achieve a cure, make the best of every day, or believe in an afterlife, understanding and preparing for death is a positive experience that improves remaining days, however few or many there may be. The goal is to reach peace and understanding that enable a comfortable passage based on the self-respect of a good, if imperfect, life. This can be done early, then set aside. I have already done it.

Cancer, unlike the instantaneous explosions of a heart attack or flying combat, is often with us for a very long time, long enough to prepare for death even while we fight. My particular longevity is highly predictable, although half in my category will exceed by a few years the median three. My progress so far, however, says that, at the peak of the bell-shaped curve, I will probably die of kidney or some less-likely organ failure near the end of this year as the cancer gains strength and spreads. But, I have no symptoms and loads of good attitude and health, so I expect to beat the average while I search science for a few more months or the long-awaited breakthrough.

Thus, I have had time to study death and work out the attitudes with which I will accept it, even as I fight diminishing odds. I have dwelled in my book on using the final part of life to put aside all fear, worry, regret, denial, anger, depression, stress, and everything negative, and fill that mind-space and life with self-respect, optimism, happiness, love, laughter, strength, determination, and everything positive. In that way, I expect to receive the gift of a rewarding contemplation and permanent peace. It is easy to find the joy in life when we are healthy, much less so when we are ill. The greater value of short time remaining will not be realized if we do not seek and manage the activities and feelings that give us secure happiness.

The transition period from happy, healthy life to the acceptance of dying may be filled with a majority of difficult chores, problems, unhappiness, and mental readjustments. The fighter tries to fill in the gaps with positive thinking and experience that will contribute to overcoming the disease and reaching the turning point of recovery and cure. Even if that becomes impossible, the goal is still the maintenance of a stable attitude and benign conclusion. I haven’t been there yet, and I may not experience it or be able to write about it. For me, unsure as yet of my success or outcome, it is important to organize and contemplate the stages of life if my fight begins to turn negative. I cannot turn away from understanding and controlling the growing thought of failing, any more than I can stop fighting, for part of my ultimate success and happiness, live or die, will be how I handle whatever comes. I want my children, and my readers, to live on by this core example, and that will be my greatest happiness.

Now we are finally, after all these ignorant, technology-challenged millennia, getting down to the microscopic cell and DNA level where the problem lies. The cure curve is getting steeper. We are identifying and attacking cancer before it develops. Steadily we are filling the gaps in prevention, treatment, and cure. Hang on, survivors!

It takes a long time for new treatments to pass the necessary FDA Approval Process. As my other treatments fail, I may hope to use a magic treatment that has prolonged life in early trials: immune cells are removed from the blood, trained to recognize cancer cells (Danger! Danger!) and then returned to destroy the strangers they are now able to recognize. The treatment needs more proof before approval. The FDA has good reasons. Some patients have already died without access to the magic. But, we must not allow our compassion and need to interfere with the thorough scientific method that is the basis of the trial system. Perhaps there is room for a compromise for the dying who have exhausted all other options. Sometimes, bureaucracy should be flexible.

It is now likely that I will die around the end of 2009, according to the averages for my condition. I do not mean to be dramatic, but I believe in blunt talk and no denial. Acceptance of reality is not incompatible with fighting for life. I will, of course, continue to fight to extend the quantity and quality of my life. As the cancer tumors in my bones continue to grow and spread, as my immune system comes under assault, it is even more imperative that I continue the mental and physical strength and health programs that I have been fighting with for the past three years. Even if I fit into the middle of the bell-shaped curve where 50% of those with my condition die before three years, I know that good attitudes, fitness, and healthy practices can give me some additional time. It is still possible that I will move to the longer side of the curve and add more years to my life. I am 73 1/2, aiming for a party on my 75th birthday.

Meanwhile, science is trying hard to save me. Ten years ago, there were only a few drugs to treat cancer; now there are hundreds. Our new ability to see and change ourselves at the cellular level is on the verge of new cures. Earlier discovery has also helped. In the last 25 years, the five-year survival rate for all kinds of prostate cancer has shot up from 69% to nearly 99%. 10-year survival for everyone is now 91%, but in my case only 10%.

My problem is that my cancer metastasized to the bones before my prostate was removed, rooted and growing without the original source. That places me in the 1% of PC patients who will not live to five years because no cure has been found. In me, the two main treatments that prolong survival have now lost their effectiveness and only my strong efforts, good luck with the remaining minor successes, or a break-through by science will carry me beyond this year. However, I am in great physical and mental condition, and I know all the ways to fight, so I have good reason to believe that I will live longer than average.

Cancer is the toughest fight most of us will ever have. If you have cancer, you must fight. You fight to stay alive, but also for much more. If you win the fight, you have added another new life to your old one. Whether you are prolonging your life or sure to die, you are still fighting for other things, just as important: you are fighting for self-respect and dignity; you are fighting for peace and understanding; you are fighting for the ultimate reconciliation and love with your family and your spirituality. These are difficult challenges in the midst of your illness, but achieving these goals will give greater meaning to your life and the experience of dying, whenever it happens, whatever the cause.

This book is not a story about me. It deals with the general issues that most cancer patients and caregivers will have to deal with, and the focus is on individual actions and attitudes. My own writing and cancer experience, plus a history of determination and fighting, enable me to give some good advice and motivation as I practice what I preach.

A few weeks ago I wrote that the average man with my condition dies about three years after treatment begins. For me, that would be about a year from now, and my initial treatments are beginning to fail on schedule. But, I am in great physical and mental condition, I have no symptoms yet, and I fight in 100 ways, so I believe I will beat the average and celebrate my 75th birthday 15 months from now. A mighty party with my children is planned. Meanwhile, the scientists are finally creating some new treatments after decades of stagnation in prostate cancer. I will enter trials with enthusiasm.

My book is not about me, but is general guidance for others based on my experience. But, this year should be interesting, so I am going to write a Personal Cancer Journal, which will be published here and written as long as I am able.

See the website for numerous book chapters and other information about fighting cancer.