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Patients frequently come to me asking for advice about their newly diagnosed cancer. The word cancer has become a household signal for mortality. The media and press have created a vast array of cancer related euphemisms. People are now a victim of cancer; just the same way they are a victim of a random violent crime. There is a war on cancer just like we have a war against terrorism in the Middle East. We have elevated cancer survivors to hero status similar to those heroes who stop at the side of a burning vehicle and risk their own personal life to save another. Parks are being dedicated to those who have succumb to cancer just like memorial parks that showcase the tomb of the Unknown Soldier. The list goes on and on and on.

Weekly, I get the question: “What can I do?” Most times, patients are confused about the therapeutic approaches to “curing” the disease, but they have absolute ignorance about the disease itself. They do not know the cancer tissue type; they do not know whether markers or stains were used to identify and stage their cancer; they do not know the extent of the cancer in their bodies; and they seem to be so afraid, that they decide to give all power of decision making to their oncologists at the sacrifice of all other opinions about their possible therapeutic adventures.

Before I advise anyone about cancer treatment, I ask them two very important questions. Are they afraid of death? And are they afraid of dying?
In most living people, and we all know people that we consider “not-living”, death is a very scary proposition. However, I submit that if anyone steps back a moment and reflects on the subject of death, one will find that living is much more uncertain than death. In the natural course of living, it is much more frightening to live with the knowledge of death because we step closer and closer to death as we age. Death is unavoidable.

Almost every theist I have encountered has a worldview that the physical being is a mere shell of the religious being. Most believe that the soul lives forever if the proper religious conditions are met while the being is alive in the physical dimension -- although there is the great assumption that the consciousness that we have guiding us in physical life is the same consciousness that will guide us in the spiritual life beyond mortality. Those patients with cancer who have met the religious criteria for assuring “everlasting” life should have the greatest amount of internal peace when the diagnosis of cancer is made, but many times they have a great deal of fear leaving the physical realm for a more beautiful realm somewhere in the heavens and beyond. They recognize the necessity to die before they get to heaven. But they also recognize that when they die they will be somewhere else; so they will have to leave everything behind. Suddenly it seems as if all of what they have to leave behind is more important than what it is that they could experience on the other side of the veil. The religious anchor that got them through every dilemma in the living world no longer seems powerful enough to quiet their fears, and provide them enough personal power to listen and learn about their cancer without the fear of death. Sometimes I see patients who have an over-inflated sense of self; they wonder how the world will survive without them. They are very committed to staying alive to continue to guide their entire circle of family and friends. They are afraid of death because they seem to be so attached to a life that they feel they control. Although they acknowledge some higher power, a personal God who is actually in control, they still see themselves as the broker of that power; therefore, they must survive at all costs, even if it means living in an almost vegetative state from the effects of surgery, chemo and radiation. I believe half the time the cure kills more people than the disease. I can safely opine that life continues with or without us. Death is a personal adventure, not a communal one.

What is certain is that if any patient is afraid of death; they will become desperate to stay alive. And we all know that desperate circumstances lead to desperate solutions that reflect unrealistic expectations that never turn out for the one who posed the question. Making decisions out of absolute ignorance is absolutely ignorant. Cancer is not an emergency like a heart attack, a bowel obstruction, a stroke or severe trauma. It is a medical urgency with time to develop a plan. But if a patient cannot get over the fear of death, they will make bad decisions and learn to regret them if they remain alive, -- especially if someone else made the decisions for them because they were too afraid to face death as a real possible outcome.

The idea of dying conjures up all kinds of horrific images and fantasies. I have had some patients actually relate that they are comfortable with death, their wish is just not to suffer. A Buddhist friend of mine seems to believe that suffering is a state of mind and that any situation, no matter how desperate, can be viewed as divine in some fashion or another. I do not share that worldview. I have witnessed much suffering in my 30 years of medical practice. Most has come as a result of terminal patients refusing to see that their life is coming to an end, and their refusal to accept it. Or their families refuse to accept it and begin to force physicians to perform heroic deeds in order to keep their fathers, mothers, grandparents, spouses, partners or siblings alive. I hear about Hope every day, but I have come to realize that Hope is a powerful weapon of fear; it infects and spreads like a virus when our resistance to reality becomes paramount. The current state of medical care at the end of life assures that no one needs to suffer while dying. It is my experience that when someone accepts death as a truth, then they seldom suffer -- as long as everyone around them accepts it also. Those loved ones in a patient’s support system who deny the reality of death have a tendency to bring their personal emotional suffering to the decision making process. I have seen so many decide what’s best for their dying mother, or father, or even their child based on their own unacceptance, or incomprehensibility, of their loved one’s fate.

It’s not like I haven’t had to get my grip on cancer on a personal level. My father and uncle died of cancer. But most recently, four years ago, my lovely wife died of metastatic breast cancer. When I visited oncologists with my dying wife, they would walk to within six inches of her face and tell her that she was going to die. That was a very difficult time to navigate their beliefs; especially when a few minutes later they would tell her they had the only Hope for her. She had her yearly mammograms and had her yearly check-ups. She and I married four months prior to our discovery of her cancer which made it especially hard to decide what to do. The oncologist told her that she had only three months to live and she could only survive with weekly blood transfusions. She had breast cancer in her bone marrow. Medical science could not identify the primary tumor itself. She chose not to accept their suggestions, and only to use a few medications for pain and estrogen receptor modulation in an effort to slow or manage the cancer. She asked me to provide alternates to the traditional therapies, and I did. She would often tell me that when she experienced a good day, she was not going to spend that day in the doctor’s office. And she didn’t. I found her courageous; but more important, she never had a fear of death nor a fear of dying. She never suffered. After diagnosis, I supported her in living out her final 18 months of life on her own terms -- not mine or anyone else’s. There was some strong opposition to her wishes, but she knew best what was right for her. I knew best to do what she wanted for herself.

My advice: Cancer is not an emergency. If you get the diagnosis, take a step back. Grieve. Find some way to discuss death and dying with someone you trust and love. Be comfortable with those two important aspects of life. Remove all fear of both death and dying before you make a decision, and make it with your eyes wide open. Proceed to gather information. Get opinions from professionals who have different structures of education; don’t just jump from one traditional oncologist to another. Find one who is not as traditional, and get their opinion about cancer treatment. And do your best to find what works for you, not what works for everyone else but you.

After all, if you’ve been diagnosed with cancer, it’s your life and your death that’s the issue, not theirs. And you are in the best possible position to make the proper decisions for you.

Posted by Katie Reed at 8:33 AM
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