Tag Archives: courage during cancer

The most difficult question

20141027_101624Doctor-assisted dying is not a choice for ill people in my state. Nor is it an option nationally, as it is in Switzerland, Belgium, the Netherlands and several other more enlightened countries.

Many people will immediately protest: “But obviously, suicide should never be legalized or encouraged.” To which I reply, as a person with terminal cancer, “My desire to take an early exit is a completely different thing than a healthy person who commits suicide.” I want only to hasten the inevitable and painful death that already looms on my horizon; I do not seek to end a healthy life filled with possibilities.

Speaking rationally and without depression, and after a lifetime of considering the ethics of the question, I would choose physician-assisted dying in a heartbeat, knowing what I am soon to endure. But it’s not legal here.

(Warning: skip the following single paragraph if you are easily horrified.)

I have carcinosarcoma, also called Malignant Mixed Mullerian Tumor, which is so rare that there is little research being done on it, and no cure. After living with it for a year and a half and enduring major surgery and various chemotherapies, I’m now in the terminal stage of the disease. The cancer has spread throughout my abdomen and into my liver and lymph glands, but this won’t be what kills me. A large inoperable tumor is embedded low down between my intestines and is impinging painfully upon my bladder and rectum. The rapid growth of this tumor will soon pinch off these vital systems and leave me completely blocked, unable to urinate or defecate. The tumor is growing so fast that my belly already resembles that of a woman five or six months pregnant; this distension will increase swiftly in the weeks to come. Any surgical attempt to correct the blockage would only temporarily extend my life while exposing me to even more continued suffering.

Quite calmly and rationally I ask you: why is it against the law for a physician to help me make a dignified early exit with my head held high? Why should control over the end of my own life be dictated by other people’s emotional and religious scruples? An assisted death with dignity would spare me horrible suffering and would prevent my family and friends from seeing me waste away to a skeletal form with a hugely distended belly. Why do lawmakers feel so certain that dying people should have to endure their full quota of pain?

In this country it’s legal to put down a dying pet. In fact, it’s considered to be the most humane solution to ongoing pain. So why does our government compel human beings to go through the kind of suffering that we would never allow in our own cats and dogs?

Perhaps you happen to believe that human life has a sanctity that must not be tampered with. That’s fine, and I respect your religious values (although I must point out that the Bible nowhere contains the phrase “sanctity of life”). But an enlightened society should not allow followers of a single religion to enforce their religious beliefs upon others, nor should those religious tenets be encoded into the default government over all Americans. I believe that subjecting me and my family to extended suffering serves no useful governmental purpose and displays a profound lack of compassion.

I seek only peace, and a quick end to my suffering. And this is exactly what’s being denied me. I believe that the Swiss, the Belgians and the Dutch have it exactly right when it comes to compassion for the suffering: after a waiting period of several months, and a close vetting of the medical records, patients are allowed to gently and painlessly pass away in the presence of their family and friends. We need this option in the United States.

Please share this text with your legislators and your governor.

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Inspirations

Photo copyright http://www.hawking.org.uk/
Photo copyright http://www.hawking.org.uk/

When the newspaper wrote about my rare cancer, many people took me aside to tell me how inspiring I was. I felt vaguely fraudulent each time this happened. “Shucks,” I felt like saying, “there are plenty of people who are more inspiring than I am.” Consider the case of Stephen Hawking, recently the subject of an excellent film, “The Theory of Everything,” who was diagnosed with a motor neuron disease in his early 20s. His doctor told him he’d be dead in two years. Today he’s 73 and still hanging in there (see his excellent home page here). My situation with carcinosarcoma is like having a head-cold when compared against the pain, inconvenience and emotional wear-and-tear that Hawking has experienced over the past half-century.

But what do we really look for when we look for inspiration? It’s surely not related to how much another person has suffered during the illness. I learned today that there is a homeless woman here in Bloomington who has ovarian cancer. My heart goes out to her because she cannot hope to receive adequate medical care since she has no address, no money and no advocates. She will suffer, and she will eventually die, but how many people will hail her example and call her experience of cancer “inspiring?” Yet she spends each night on a cot in a shelter, and undoubtedly does what she can to get through each day despite being cold, hungry, bedraggled and frightened. Her experience is certainly worthy of respect and compassion, in my book.

It’s obviously not so inspiring to see someone wallowing in the depths of despair and depression while ill. So is optimism a chief component of what we characterize as “inspirational”? Optimism is good, but it can easily lead to a Pollyanna-like tendency to try to negate a very dark reality by being falsely bright and cheery all the time. One doesn’t want to be The Queen of Denial, after all, because it really doesn’t help the situation. A sense of optimism, and the degree of suffering experienced, are both factors that can contribute towards being “inspiring,” but they’re obviously not the entire formula.

So what do we mean when we label someone as “inspiring”?

I have a disease that will eventually prove fatal. I wrote about how I’m dealing with that fact on my other blog, “War as a Metaphor for Cancer.” My way of dealing with cancer is to calmly accept the cards I was dealt and go forward with as much courage and with as little stress and struggle as possible. But that’s just me. I’m definitely not seeking praise from others, nor am I trying to set some kind of example.  I would never presume to tell other cancer patients how they ought to run their lives, or how they should react to their diagnosis. We are all different, and we all must come up with our own ways of dealing with life-altering stressors. I have chosen the way that works for me.

And that’s the heart of the matter, to me. The sheer ingenuity and creativity of the myriads of other human beings who share this planet with us, the way they come up with endless inventive solutions for the problems that beset them, solutions that are as different as they are—now, that’s what I call inspiring.