TWO SCRIPTS: LIFE OR DEATH
One of a suite of blog entries about the aftermath of chemotherapy and radiation therapy, including brain damage and eyesight damage; a survivor's account of the aftermath of cns lymphoma, non-Hodgkin's lymphoma of the large B-cell variety, in the author's case cancer of the brain and the spinal cord.
THIS IS A PICTURE OF YOUR GOD:
A HUGH COOK READER.
I have a starring role in the movie of my life. The problem is, however, there are two scripts, and I don't know which one I'm going to get handed, or when.
One movie is a kind of family comedy, HUGH GETS A NASTY SCARE, which has a happy end. The outcome? Well, this messed-up eyesight of yours, that's damage from radiation to the brain. Can't make it better, it's permanent and irretrievable, but it's self-limiting, won't get any worse, and you can still read, write and use a computer for the rest of your life.
This movie is made is color, and has scenes like 6 February 2006, when the entire nation of New Zealand comes to a half in honor of the fact that it's my parents' fifty-second wedding anniversary, and we all sit around drinking wine at about eleven in the morning in the garden of the perfect summer house, splashing orange juice in the wine to pretend that we're not a bunch of degenerates getting trashed.
My father asks if I'd like more wine and I say yes.
The other movie is made in black-and-white and the script is called NINE STEPS IN DEATH AND DYING, and at the end of it there's a formal written examination which you have to prepare for, and if you mess it up, if you're not at the right step when you're supposed to be there, big trouble!
I'd like to know which script is mine, but for that I need a magnetic resonance imaging scan of my brain, and someone has to study the scan and pick through the aftermath of last year's brain cancer and the subsequent onslaught of chemotherapy plus, on top of that, my personal Chernobyl, my sixteen grays of radiation to the brain.
They have to look at the messed-up organ, and it's not going to be easy, but I'm told they'll be able to do it, they're the elite, and they've got to give me an answer. Radiation damage? Or cancer back again?
So that leaves me in limbo, and not entirely gracious about it, a little irritated because of only sleeping three, four hours a night because of the dexamethasone I'm taking to control any brain swelling if it is cancer back again.
And not really ready to involve other people fully in my script because, like I say, I don't know what script it is.
On top of that, other people's concern for me is not an asset to me. Rather, it's a downside, a liability.
As I wrote in my CANCER PATIENT book, one thing I pretty soon realized was that other people are suffering much worse than I am.
If it turns out that I've been given the PROBABLE DEATH script, then dying I can handle. That's my thesis.
Meanwhile, as I said to the Truly Concerned Person, and felt bad for saying it, but it had to be said, "Can we have less of this poor Hugh shit?"
I suppose that's unpardonable, partly the dexamethasone talking, my irritation from cumulative lack of sleep slowly building in the direction of a general intolerance of planet Earth and all its inhabitants.
Still, my feeling is that other people are not an asset to me, because I don't think there's anyone in my world who is going to help me handle my death, if it turns out that death is what I'm facing.
And, even if I do get the death script, I don't know for certain that I am going to die, because there is still a non-zero survival chance.
My concept for my death, then, if it turns out that I am facing death, is that it's something I do by myself, in my own time, in my own way, and I don't want anyone along for the ride, thank you very much.
If I am destined to die, later this year or early next, then it will be a supremely privileged death. Knowing (more or less, not of a certainty, but almost).
Dying a death that is fully funded. No debt collectors knocking on the door after I'm gone. State-funded medicine, so you do stand in line, but standing in line is better than not having a line to stand in.
And, if it's brain cancer, well, the brain has no nerve endings.
That said, what are the details?
I don't know, and, naturally, I'm curious, and there are questions I'd like to ask, but it's a little inhibiting if you're in the doctor's room with other characters in this movie, such as mother, father, sister, wife.
Broadly speaking, it's been good to have family members along at medical conferences, but, when I found out that everyone was happy enough for me to go alone to my medical review at oncology on Friday 10 February, that was a relief.
No question of the wife being there because she's still in Japan. Me, New Zealand.
In preparation for the meeting of Friday 10 February 2006, I made a kind of agenda.
As I write this, I haven't had the meeting yet, so I don't know how it will pan out.
My concept of the meeting, then, is as follows.
I outline my condition. Subjectively, my eyesight is no worse. Still have no central vision in my right eye.
Diagnostically, if dexamethasone improves vision then the answer is brain cancer. If the drug does not improve vision, that suggests radiation damage to the nerves.
Me, I can't tell which is happening, improvement or no improvement. But I certainly no longer have the terrifying sense that my vision is worsening in the direction of blindness.
Having talked about my eyes, I'll talk about the dex, say I feel the dose is okay for me. A little irritable, but still fully functional, and I feel flat and level-headed at this dose, eight milligrams a day. The brief flirtatious junkie rush from the first few days on the drug, when I was taking a massive sixteen milligrams, that's all over. I feel like business.
Point three, a letter. Can I have one for Thai Airlines? Very reasonably, they've asked for an oncologist's report and a supporting test result before they'll think about a full refund.
I'll mention the MRI situation, say I phoned Radiology at the Greenlane Clinical Center on Tuesday 31 January, was told they had "just" received a request for an MRI for me (as in "just last week") and was told that someone would assess the urgency of the case in "about two weeks", at which point I would be given a place on the waiting list.
That done, I have some additional questions.
The oncologist I saw last time said treatment, if it is cancer, will be by the implantation of a place-and-forget device in the spinal area. Name of the device, please, and the drug it administers. I'd like to read up about this online.
And now the questions for which I need privacy, don't want anyone else in the room while I'm asking these, don't want to have to worry about other people's sensitivities as I push for my answers.
What I need, and what nobody has drawn for me, is a roadmap for my death. If I'm going on this journey, then I don't want to go with nothing but a blank bit of paper with "X marks the spot" scrawled in the middle of it.
If the cancer has come back again (which we don't know, and will not know for a while yet), and if I assume that I do not survive, then for how long can I expect to maintain physical and mental integrity?
When the downside starts to hit, how is it going to show up? Mechanically, what is going to happen?
Is it expected that I will die in hospital, and, if so, then how long can that reasonably be expected to take?
And, finally, what is going to be the mechanism of my death?
Meantime, there are the mechanics of life to deal with.
I need to get to the optician's and have a pair of reading spectacles made, left lens only at this stage, focus optimized for the length of my outstretched fist, to optimize my time at the computer keyboard, which is where I spend most of my day.
My progressive lenses have a sweet spot which is okay for that, sort of, but I'd do better with an optimized solution.
As a short-sighted person, I adapted well to progressive lenses, and got a perfectly natural result. However, I'm now a long-sighted person, intraocular lenses focused at infinity.
The good point is that I don't need spectacles for watching movies or walking about the street. The bad point is that I need them to pull into focus anything closer than my outstretched arm. And progressive lenses quite simply do not work as well for a long-sighted person as they do for a short-sighted person.
Because I'd achieved an optimal result before, I was expecting an optimal result this time, but, plainly, I'm not going to get it.
My computer is the machine I live through at the moment, putting together a second edition of THE WITCHLORD AND THE WEAPONMASTER, preparing for publication the three books in the OCEANS OF LIGHT fantasy trilogy, working on a collection of short stories called THE SUCCUBUS AND OTHER STORIES, and working, also, on a second book of poems, THE DEATH OF BIRDS.
THE DEATH OF BIRDS is a sequence of poems about death and dying, and it will be my souvenir of this journey, even if it turns out that the script I do get handed is the one titled HUGH GETS A NASTY SCARE.
Because I don't know for a fact that I'm dying, I can't say that these are poems written out of the process of dying. But I figure that, at the very least, they're a good dry run.
The last poem in the book is going to be, all going to plan, ICARUS DESCENDING. Icarus, having flown too near the sun, is descending. Going down. No way out.
But, descending, he makes no concessions. Signals no regrets. Descending, he indulges himself in one long shameless burn of ego, going out in his own way, choosing his own approach to his death and making his death his own.