My Novels

Tuesday, March 27, 2007

"Surviving" terminal cancer

What is up with all the public people lately who have decided they will whip terminal cancer? D-E-N-I-A-L, not just a name of a river in Egypt. Elizabeth Edwards, mets to the bone from breast cancer; Tony Snow, Prez Press Secretary, colon cancer spread to his liver. I think most Americans are totally deluded; the pharmaceutical companies and oncology specialists have told us so often (via TV/media ads) that NOTHING is unbeatable, that we'll live, perhaps, forever...that when REALITY (impending death) rears its ugly head, acceptance is out of the question. We MUST soldier on, suffer as much as possible, bring untold grief and sorrow to our loved ones who must "witness" our useless suffering. Is it a mad, mad world, or what?

IF I found out tomorrow that I had ANY KIND OF CANCER, I would have NO treatment. None, zip, nada! I would request I be allowed to put my life in order, share with my loved ones, and try to be kept comfortable as I was dying. Or maybe I'd opt for an early out, before the medical establishment got hold of me and would NOT let me die without suffering pointlessly? I just know I wouldn't stand up and shout, "Hey, I'll beat this cancer! Look at me, how brave, how optimistic, how hopeful I am!" I think that is doing a grave injustice to all those who are on their death-beds, still in denial.

I remember Michael Landon making his last appearance long ago on the Johnny Carson show. It was obvious the man was in pain, but as he tried to smile bravely (more of a grimace really), he declared he would whip the fatal pancreatic cancer eating away inside him. About two weeks later, he was dead.

I know when DH was diagnosed with acute leukemia (in advanced stage), and I managed to get the oncologist alone outside the ICU, he was NOT optimistic. I mentioned a bone marrow transplant, and he just shook his head, said that DH was past 55 and not a candidate. And even if he was younger, he had a serious heart condition. In other words, it was fairly obvious the doctor was being HONEST with me, if not DH. And what brought that truth home to me was when this oncologist put his hand on my shoulder, and just kept shaking his head. It all happened so quickly, I'm not sure DH knew he was dying...but I DID. I thought maybe he'd live a few weeks, no more. People told me to have hope, and I just thought they were crazy. Sure enough, he died within a week of being diagnosed, (sooner than even I expected) after his first chemo. He would have died sooner, had I not taken him to the ER, and sometimes when I think back about his last weeks, I believe he KNEW he had some form of cancer (which was genetic in both sides of his family) and was trying to die at home. He often told me he'd kill himself before he'd suffer the way his dad and sister did when they went through terminal cancer treatment and then, of course, died.

In the book, "How We Die" by Sherwin Nuland, a physician, this excerpt explains what doctors understand and experience with cancer patients:

No one who has treated cancer patients will ever discount the power of the subconscious mechanism we call denial, which is both friend and enemy of a person seriously ill. Denial protects while it hinders, and softens for a moment what it eventually makes more difficult. As much as I applaud Elisabeth Kubler-Ross's attempt to categorize a sequence of responses to the diagnosis of mortal illness, every experienced clinician knows that some patients, never, at least overtly, progress beyond denial; many other retain large elements of it right to the end, in spite of every effort that might be made by a physician to clarify each issue as it arises. Explanations of the forecefulness of deninal's influence are themselves often denied.

Denial is one of two factors that immeasurably complicate our best intentions, when as physicians or the beloved of a dying person, we seek to enlist him as a full participant in choices that must be made in the days remaining. Few dying people with a clear understanding of the inevitability of their disease process are willing to suffer through heroic and debilitating attempts to fight off an end that seems close. It is in the "clear understanding of their disease process," however, that reason and logic sometimes founder, and denial is a major element that stands in the way. Denial is a significant factor, for example, in the surprising frequency with which dying people refuse to confront the nearness of circumstanes they anticipated when, while still healthy, they assigned advance directives prohibiting major resuscitative efforts. When the chips are down, almost no one wants his life to end, and one good way for the conscious mind to avoid it is for the unconscious mind to deny that it is about to happen.

The other hindrance to full participation is the refusal of many patients to exercise their right to independent thought and self-determination--in other words, their control. The psychoanalyst and legal scholar Jay Katz has used the term psychological autonomy to denote this right of independence. Many a patient worn down by the ravages of illness or overwhelmed by the immediacies of a dire situation will be unwilling or emotionally unable to use his autonomy. The need to be cared for and to be relieved of responsibilities is not easily dealt with under such circumstances, and it may lead to wrong decisions. But the problem may be lessened if both patient and caregivers reflect on it together. When this is done, a dying man will sometimes decide that he wants to participate more actively than he thought he could.

And one more important excerpt regarding false hope:

A promise we can keep and a hope we can give is the certainty that no man or woman will be left to die alone. Of the many ways to die alone, the most comfortless and solitary must surely take place when the knowledge of death's certainty is withheld. Here again, it is the "I couldn't take away his hope" attitude that is so often precisely how a particularly reassuring form of hope is never allowed to materialize. Unless we are aware that we are dying and so far as possible know the conditions of our death, we cannot share any sort of final consummation with those who love us. Without this consummation, no matter their presence at the hour of passing, we will remain unattended and isolated. For it is the promise of spiritual companionship near the end that gives us hope, much more than does the mere offsetting of the fear of being physically without anyone.

The dying themselves bear a responsibility not to be entrapped by a misguided attempt to spare those whose lives are intertwined with theirs. I have seen this form of aloneness, and even unwisely conspired in it, before I learned better.

And so, I conclude this entry with the thought/reflection that perhaps all this "false hope" by public figures is indeed, NOT a help, but a serious hindrance in allowing us all to learn ACCEPTANCE of that which we CANNOT change. Maybe they should think about THAT.


Ed Bellinger said...

I do not know about denial, but I have survived pancreatic cancer for four years and it spread into the liver four years ago. I have not had any treatment because it is not treatable until it is big enough. I live one day at a time by the grace of God ad I do not want to be put out of my misery because I enjoy life I am getting married later this year and I do not worry about dying if it happens it happens I go a day at a time.

Cara said...

Thanks for your comment, Ed. Yes, there are MANY forms of cancer, some with a better prognosis. What I was addressing in this post is for those who are at/near the end-stage of any cancer and their denial. And the useless, sometimes excruciating medical treatments that often do more harm than good. I find it interesting you are NOT receiving treatment, which might be part of the key to your survival thus far.

Good luck and take care.

Anonymous said...

You are commenting from an uninformed source - your own inexperience. Let me assure everybody that denial is a valid and simple tool - the easiest way to cross a mountain is to walk around it. I have twice survived terminal cancer the first 50 years ago and the 2nd was 8 years ago on both occasions I had radiotherapy and massively invasive and life altering surgery. I was born in 1946 - and I ain't dead yet :-)

ITI Istanbul said...

Nothing is certain. Miracles are part of our lives. Surprisingly perhaps for a teacher, I have scathing disrespect for so-called scientific knowledge and medical ‘facts’ and this is due to my personal experience with cancer.

The 30th June 2009 is the date I was confirmed as dying. My surgeon declared me inoperable, terminally ill and with at most six months to live. It is on this day my story starts.

I knew immediately, as I caught my sister’s worried gaze, that the operation had not been a success. There were whispered conversations behind the door between my wife Cheryl and the surgeon. The cancer had spread through out my body and was inoperable. I knew my condition was terminal before the oncologist confirmed I had stage 4 colon cancer and had at most six months to live. As far as the medical profession was concerned and indeed everyone else, I was dying.
On 17th February 2010, eight months after the aborted operation where I was declared clinically inoperable and terminally ill, I was admitted into Capa, a Turkish University teaching hospital, and anxiously operated on by the same surgeon, Turker Bey. This time after the operation it was smiles all round. The main primary cancer tumours in the colon and the tumour in the bladder were successfully removed along with 30% of my intestines. Subsequent analysis of the intestines in pathology revealed, to the incredulity of the medical team, that they contained 0% cancer cells. The cancer had gone! The surgeon admitted that in the space of 8 months I had gone from terminally ill to cured and was at a loss to explain how it was possible! Other doctors, who I have spoken to subsequently, either do not believe my account or question the accuracy of the original diagnosis. However I have all the medical reports and radiology scans to verify my experiences.

I now believe that we are physical, mental and spiritual beings and when these three attributes are in balance and interconnected our potential to heal, develop and create becomes unlimited. Unfortunately since the growth of modern science, the mind has acquired a supremacy over our bodies and souls: logic gets precedence over emotion, rational argument defeats intuition and academic research outweighs experience. The time has surely come to re-dress the balance. Only by recognizing the interconnectedness and synergy of our physical, mental and spiritual existence can we truly develop and achieve our potentials. We need to adopt a whole person learning approach to learning, healing and development. This means a balance and harmony both on an individual level of our physical, mental and spiritual domains but also balanced in terms of our connections to the universe and Mother Earth. We need to recognize that the grotesque consumer choice at the supermarket enslaves us to a capitalist materialism in a similar manner as the West African is captured by famine but also that the excesses of one results in the scarcity of the other. An unbalanced world is a ‘sick’ planet where cancers can spread.
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