I have finally come to a conclusion on the list of options I mentioned earlier. It was a once-in-a-lifetime high stakes decision. Here were the options:
1. Supportive care, meaning we don't even try to treat the illness.
2. Low dose cytarabine. Dr. Berg says that this option has proven ineffective on patients who have run aground on Vidaza, so the option has been discarded.
3. Clofarabine - 46% effective. Dr. Berg is quite interested in this possibility. It has a couple of problems – strong side effects and 10% of patients die within 30 days.
4. Induction chemotherapy. Chemo is used to kill the cancerous blood cells. Unfortunately, it kills many other cells besides. This is the only option that actually has a chance of curing the patient, but at my age, it has a better chance of killing the patient. Molly Williams had two or three rounds of induction chemotherapy before she died, and she was younger than I am now. This option has been dropped.
That leaves supportive care and Clofarabine as the remaining options. The choice has been tough – it's a gamble either way. Here are the statistics on clofarabine. As I said, 10% of patients die in 30 days. 46% achieve a positive response, with an average of 41 weeks life from start of treatment, anywhere from a few weeks to a year and a half. Having a positive response does not exclude disagreeable side effects for at least part of that time. The most common are nausea, vomiting, and diarrhea, but there are many others. That leaves 44% who do not have a positive response, but who do not die either. They get the side effects without the benefit.
I have given a bunch of statistics, but I have no way of factoring in the fact that I have already outlived my prognosis from July 2011: one to one and a half years. Or the fact that on Vidaza, I was one of the 25% who experience no nausea or vomiting. Now, a normal person would take this data, along with the statistics, and ponder it until one decision felt right. I believe it's called “intuition”. That's not me. I immediately sat down and figured my expectation of additional life from clofarabine. It came to 4.3 weeks. For those who do not know the statistical concept of expectation, it is the chance of an occurrence, multiplied by the value of that occurrence. If you have one chance in a million of winning $10,000, then your expectation is one cent.
But what I am really interested in is additional QUALITY weeks of life. Time spent in the hospital, or puking at home, should not count. I could not find any specific information on this. I tried making a series of assumptions before I threw my calculations in the fire. Finally, I began thinking about values.
I wish I could say that I behaved with resolution and according to the highest values of humanity in making my decision. Actually, I have been irresolute, changing my mind four times before making my decision final. (I am pretty sure none of you are going to be too tough on me for this.) And then, instead of deciding on the basis of values, I only used values as a tie-breaker. My first goal has always been selfish: as much good quality life as possible.
However, in pondering my decision, I found out that values count. Clofarabine is horribly expensive: $28,000 per cycle. What is the morality of spending that much to (possibly) buy a few extra weeks of life for an old guy like me? When we won't even pay for childrens' vaccinations? Let us subject clofarabine to the test of the Golden Rule, or Kant's Categorical Imperative, which are the same. The question: should a person, in a situation where some other entity is paying his medical expenses, choose the option most likely to prolong life, regardless of cost? Well, if everyone does it, that would drive the cost of medical care so high, that eventually even our very wealthy country will not be able to pay for it. But this is arguable.
The second moral yardstick goes back to the ancient world, and first of all Socrates, whom I studied at Exeter. One of his sayings was, “It is not living that matters, but living rightly.” No philosopher should fear death.
When Socrates was on trial for his life, before a jury of fellow Athenians, he said, “No man, of the least value, ought to take into account the risk of life or death when he performs any action, nor should he consider anything other than whether he is acting justly or unjustly, and the part of a good or bad man.”
By now you see which way I am trending. But I was not finished. I was under the gun; if I were to prevent Cancer Care of Maine from ordering the horribly expensive clofarabine, I had to call by the next morning. First I called our friend Phoebe Phelps, a spiritual counselor, and used her as a valuable sounding board. It was getting late, but I could still call the West coast; I called my college friend Ron Epstein, to get the Buddhist perspective. He actually came up with a new thought; for Buddhists, he said, it is important to die in as much of serenity and clarity of mind as possible. Apologetically, he explained that Buddhists believed in reincarnation, and that one's state of mind determined the quality of one's reincarnation. Ron was being apologetic because he knew that I did not believe in reincarnation. But something clicked. I want serenity and clarity of mind at death.
I was able to imagine what clofarabine could do to my clarity of mind. Even if I was lucky, and escaped the side effects, I would be wondering whether to go on to another cycle, whether I made the right decision, and whether I was violating my own values. After talking to Ron, I took a thick black Sharpie, and wrote, “I, Rufus Wanning, hereby and forever renounce the devil and all his works, including clofarabine,” and left it at Margaret's place on the kitchen table.
I expect that transfusions will be keeping me alive from here on out. Maybe a transfusion a week, on average. When you think about it, that's a lot of transfusions. I figure I've given about 40 pints of blood in my lifetime, and I've probably used more than that so far in this illness. So, I would be much obliged if those of you able to give blood would do so. I realize that Red Cross rules on blood donations are so restrictive, most of you will be unable to give blood.
Unavoidably, I have been the focus of these medical logs. But give a thought to Margaret. A couple of weeks ago, when she was showing signs of stress, I realized that my illness was more stressful for her than for me. My first reaction was to say, “What are you worried about. I'm the one who's dying, not you.” But then I realized that if the shoe were on the other foot, I would feel exactly the same way. All I have to worry about is extinction; Margaret has to worry about continuing life alone.