Second Round of Chemotherapy Winding Down

The second round of my oral chemo has five more days to run. This second run went fine until a couple of days ago when enough chemical built up in my system to cause considerable nausea. There is nothing, really, to be said about nausea. Everybody knows what it’s like, though reportedly some people find vomiting less awful than others. I am among the “others.” Jenny Diski writes in In Gratitude that “there is nothing [she] dislikes more than being sick,” and goes on a little later to put it in these terms: “Do I want to live another year or so [by taking the chemo pills] or do I want to feel ill and eat when I haven’t the slightest appetite?” To do this chemo you have eat food with your medication–otherwise your body, quite rightly, rejects it in the quickest way it knows how. Diski comments on her own question: “It’s a new perspective.”

Given the choice between being consistently ill and adding , in her case, a year or so of life expectancy, Diski chooses to forego the chemotherapy, accept an earlier death, & to die, at least, without the added indignity of regular nausea & vomiting.

Diski’s chemotherapy must have been much more unpleasant that mine, since it is only the final week of each run that has even approached what she describes. But I am far from criticizing her choice. Especially for a writer, someone who works with her mind, being deprived of the ability to think clearly because of nausea would be a terrible deprivation–in her circumstances, I might well make the same decision.

The second round (of three) of my chemotherapy has five more days to run; then I will have two weeks off, then another 28 days on. (Funny that they use the moon calendar rather than the solar to set the duration.) I’m dealing with it pretty well, all things considered. Have been getting some writing done, taking care of the business of life, with only the occasional bout of misery. Considering that this is supposed to buy me some indefinite period of more or less normal life when it is over, I’ve made the bargain–I’ll stick it out. Of course, contemplating that “indefinite period” and what lies beyond it can be depressing, but I try to dwell as much as possible in the moment.

What You Should Do In My Situation (A List of Two)

And face it, anyone reading this is in my situation. A high school classmate of Maurice Sendak’s, meeting him in later life, asked him how it felt to be famous. “I still have to die,” Sendak replied. Not tactful, but true. So what should you do?

  1. Make a will. You can now do this interactively on the internet, Google around & find a service that fits your preferences, then go through the process. You can save your work & return to it. It took me about four hours over two days. Doing this may prompt you to make sure that your savings & other financial arrangements are in order & especially that beneficiaries are named & recorded.
  2. Make a health care proxy. Different people want different kinds of care as they approach death. Some want to struggle as long as possible for life; others want to find the quietest most peaceful road out of town. The same sites that allow you to make a will online have the forms for a health care proxy. It will take you through the necessary steps so that you can spell out what kind of care you wish to receive. (Going through this process helped me to clarify my own thinking.) A proxy allows those responsible for your well-being  to know what you want when you can no longer tell them. It also relieves those same people of having to guess what you would want. It would be unjust to put anyone in that position.

These may seem like platitudes. Even if they are, you will be reducing the total amount of grief in the world by some small increment by taking my advice. Even if you are young.

 

My Situation (A List of Eleven)

Note: I haven’t done a list post for quite a while–it’s a form that allowed me to find a way into using this space creatively again about six months ago, after a long break from writing, so I’m partial to it. It occurred to me while writing the last post that I might have avoided some of the semantic circling with a list, but rather than recase that piece, I think I’ll just start fresh.

  1. My situation is that I have been diagnosed with a form of kidney cancer that they tell you up front does not have a cure.
  2. But they also tell you that you can have an extended period of health with treatment.
  3. I am undergoing treatment. This consists of taking a particular drug for three months with two weeks off the drug twice during the period of treatment. The side-effects are not bad. At the moment, sleepiness when I’d like to be awake & insomnia (sometimes) when I’d like to be asleep.
  4. Because the tumor spread into my left hip, I have trouble walking without support, so I use a walker. I would like to graduate to a cane, which would give me a lot more mobility. I also spend most of my time sitting up in bed & though it is no longer very difficult to get up & down, I am slow & being slow when one is used to being fast is frustrating.
  5. I have to the best of my ability taken care of financial & other arrangements so as to make, when the time comes, a responsible exit from this life.
  6. I increasingly find myself entertaining notions of rebirth that I would have rejected as infantile wish-fulfilment only a few months ago.
  7. I am not really afraid of death, but I fear the loss of autonomy that accompanies modern, technological medical care; at the same time, I am grateful that I have access to that care. I have does as much as possible to insure my wishes are observed when I can no longer express myself.
  8. But I have been feeling a good deal of regret lately over things I had wanted to do that have been moved off the board. I have to use the markers that remain on the board & that has engendered some resentment.
  9. I am not much interested in distractions & entertainment, but I am deeply attached to my ability to continue to work at making poems & engaging the world through writing. Reading still feels worthwhile–both as a higher form of distraction & as education.
  10. The only other things that interest me deeply these days is talking to people–close friends I’ve had for a long time, mere acquaintances & everyone in between. I find people’s conversation endlessly worthwhile. The most worthwhile of all, though, is the conversation of friends. I am fortunate to have friends & to have them close enough that they can drop by to talk.
  11. No list, by its very nature, can be exhaustive; yet anyone’s situation contains an infinite number of potential items. This list, like any list, is a kind of snapshot of my situation. I apologize to any friends reading this who might be bothered by a certain frankness in some of the items, but this is where I am now. I have been feeling a little depressed & frustrated & resentful & regretful over the last few days. One way I deal with these states of mind / body is to write about them.

 

I’m Bored with My New Toy

I’m bored with my new toy. I am ready to go back to being an ordinary person without illness & to give up all this navel gazing & self analysis & pain & support from friends, both spiritual & secular & all the immobility. Oh, yeah. Crap. It doesn’t work that way. I have to carry on with being ill. It’s depressing, frankly.

Signing My Will: Impermanence (Part II)

It’s not hard to understand the ordinary operations of impermanence. Things come & go, including people. Human beings are caught in “the relentless grip of time,” as the physicist Sean Carroll writes in The Big Picture.” And various versions of the self wax & wane over the course of an hour, a day, a month, a year, a lifetime. Most human beings most of the time are only minimally aware that they are so gripped by time & change. It’s that big change at the end that eats away at consciousness & that we try to forget about, though of course we can’t really forget about it fully. It’s a mistake to push awareness of mortality into the unconscious, though. It is bound to manifest elsewhere. For much of my life the attempt to suppress thoughts of death emerged in various forms of misbehavior that I’m too modest (or embarrassed) to report here. Suffice it to say I only made myself more miserable.

But my marker on the gameboard has suddenly been advanced by some invisible hand so as to make me acutely aware of my own approaching mortality. Timor mortis contrubat me, wrote the poet William Dunbar at the beginning of the 16th century. The fear of death confounds me. He was ill & thinking of all the fine poets who had preceded him into death; he lists them by name & how they were carried off. He repeats the line in every stanza of a twenty-eight stanza poem, hammering it home & near the end writes, “Sen he has all my brether tane, / He will naught let me live alane.”Dunbar has seen what’s coming & now knows that poetry will not protect him. Perhaps it’s silly to imagine it ever could, but those old Scots bards were said to have magical powers.

Last week I downloaded & completed three legal documents: Last Will & Testament; Healthcare proxy; & Power of Attorney, the latter two giving my wife C. power to act in my name when I cannot, the first instructing her how I would like my megre assets distributed after my death. Working on these documents projected me into the future with a strange, ambiguous affect. On one hand, I was extending my control into the future by telling others what I wanted in a legally enforceable way; but on the other hand I was projecting myself into a future in which only my ghost existed–in these documents. I felt a little like a ghost in constructing them. Once they were completed, of course, they had to be witnessed & signed.

It turns out to be fairly difficult to assemble three witnesses, a notary & the two principals involved. So I set up a meeting at the hospital where I am being treated. The notary (a vice-president in the hospital administration & a very friendly woman about my age) met us & we sat in an alcove of the lobby, signing & grabbing staff to serve as witnesses as necessary. All done in fifteen minutes, during which we made small talk & joked about this & that, knowing but ignoring why I was concluding this business at this particular time. (I was the one in a wheelchair.) I don’t think we were being dishonest. We were strangers, after all, dealing with reality. But I suspect there was just a touch of unease in each of those random witnesses, picked out today to be confronted with a reminder of mortality. A dark wing passing through the sunlight, trailing a shadow. That’s probably why we laughed so much. (They work in a hospital–maybe they don’t need to be reminded.)

Flux & flow are the way of the world, or so the most advanced physics attests, to say nothing of several sophisticated sacred traditions. But this condition is by no means all Whitmanian slip & slide & spiritual smooth sailing. Change–especially the big change at the end–will punch you in the head, knock your feet out from under you, frighten you out of your wits & rub you raw. These days, I live with the big change on intimate terms. My cancer could spread, or decide that the drug we are using against it tastes like candy & go wild. But I actually don’t think in those terms most of the time. Most of the time I talk with friends, or eat a meal, or read, or listen to music, or write this blog, or make poems, or practice Zen. In dreams the shadows will descend in a confused mass sometimes, without resolving into a pattern. A particularly sharp stab of pain, or a new pain anywhere, will produce a cry of anguish or pulse of anxiety

There are those who seek to mitigate the vertigo induced by this kind of radical impermanence by finding some sort of foundation–traditionally, something like God, but taking many other forms, from dharmas1 to selfish genes & blind watchmakers. At this point it would be simple enough to slide off toward a discussion of entropy & the arrow of time, but I’ll just stipulate that the physics confirms a more intuitive insight that Buddhists have been developing for two & a half millennia: Everything is changing all the time, but our perceptual & psychological systems smooth out change & seek patterns that allow us to function in the world.2 Normally, then, we see the world through a series of filters & reducing valves. “Through a glass, darkly,” as Corinthians has it. I’ve said in a recent post (“Reincarnation”) that the universe seems just strange enough to me to allow for some subtle flow of energy out of one’s consciousness at death. But what happens to it or where it goes I would not pretend to know.

 

 

 

Show 2 footnotes

  1. The word dharma comes from the ancient religions of India and is found in Hindu and Jain teachings as well as Buddhist. Its original meaning is something like “natural law.” Its root word, dham, means “to uphold” or “to support.” In this broad sense, common to many religious traditions, dharma is that which upholds the natural order of the universe. This meaning is part of the Buddhist understanding also. (Source: About.com).
  2. Aldous Huxley in The Doors of Perception makes this idea central to his thesis about psychedelic drugs.