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'm waiting for a diagnosis, which will be some time yet to come, so, for the moment, my life is in a holding pattern. Go back to Japan and teach English, stay here in New Zealand and die I have no idea how this is going to work out.
Having some paperwork needing a doctor's signature, I show up early for the local doctor's open surgery here in Devonport, New Zealand. The woman greets me by name. I'm something of a regular. I say, hi, I'm here for Grant's morning surgery. She tells me there's going to be a wait. There are four people ahead of me, and I end up waiting for well over an hour.
Eventually my father comes and shakes me awake. Must be a phone call for me. No, I'm not at home in bed. I'm in the doctor's surgery, where I've zonked out, and it's Grant himself, smiling, who is stirring me awake.
This is not the first time that I have fallen asleep in his waiting room.
Unembarrassed, I explain that it's the dexamethasone. Can't sleep, so end up getting a bit ragged. So, being exhausted, I very naturally nodded off in the waiting room.
That said, with the dex, I don't need much sleep. If I can get four hours a night, that's plenty. Two is workable.
The first lyrical rush of the drug has worn off.
For me, restarting the drug after a break of some months was quite a blast, and I was on a roll for about half a dozen days, energy levels up, talk rate up, mood elevated. My mother described me as "manic", though I don't think anyone else would have bought this description.
That first rush has worn off.
My oncologist has cut my daily dose from the massive sixteen milligrams a day which i started on. Has cut it in half, back to eight.
At this level, I move forward through the day with a kind of relentless shark-swimming energy, the energy of someone working efficiently at a conveyor belt, a kind of stamp-it-out-and-do-it-again energy.
It's the right energy level to be at while I work on what I'm doing now, which is, chiefly, to proofread the 250,000 words or so of my sword-and-sorcery novel THE WITCHLORD AND THE WEAPONMASTER, first published back in 1992 but out of print for over a decade.
The book will be back in a print in a new edition available from lulu.com.
Lulu.com/hughcook, that's my storefront, where I'll have the WITCHLORD book on sale this month, February 2006. Real soon now.
Being on dex, being focused by the drug, being energized, but being energized at a low level, a shark-swimming level which can comfortably be maintained right through the day, is the ideal place for me at the moment.
From last year's experiences, I know that dex is not a perfect drug. I suffered then and can expect to suffer again an unpleasant constellation of side-effects, including a puffy steroid-user's face, spontaneous nose bleeds and other inconsequential internal bleeding, weird taste changes which made red wine undrinkable, and, as fatigue levels build up thanks to the annihilation of sleep, an intense irritation. And wasting of the major muscles of my thighs, for which I eventually needed some physiotherapy.
It's interesting to be exploring this drug experience, and, to be honest, going back on the dex in January was, for the first few days, a very sweet little junkie trip. This drug is, for me, very lovable, at least in its first week.
But, with the dose having been cut to eight milligrams a day, the initial elevation of mood has gone, and I am no longer bubbly buoyant but flat. Flat and dynamic. A shark. A dynamo. Moving forward with the energy of gigabytes of music pumping through my ears from my computer.
My computer setup gave me the opportunity to name my computer, and I named it "Writing Machine", and that's what I am right now. The ultimate writing machine.
Sleep four hours, the night is not done but I am, and the machine is there and so is the task.
I am at home with my parents, and the only things I do, really, are to eat, write, go for a walk once a day, 88 And make my bed. My mother has pushed, quite hard, to be allowed to make my bed. But I think I have to draw a line somewhere.
Writing, always writing rather than reading, because writing I can do on the brightly-lit computer screen where I can control the font size. Reading is something I do but always with a degree of difficulty, working with a new pair of progressive spectacles that I am still getting used to, working with my messed-up left eye, the right eye useless for reading because the central vision is gone. Hold out my thumb right in front of me and I can't see it.
I'm moving forward, then, in work mode, and, generally, I have the work-sleep balance right, though that morning at Grant's I'd lost too much sleep and so had crashed out in his waiting room.
Grant is my first stop for paperwork, and, as already indicated, there is a bit of this on occasion. My wife, for example, needed a letter from a doctor here in New Zealand for the local daycare center where our daughter, Cornucopia, not yet two, receives daycare while her mother goes to work.
The daycare center in Japan needed paperwork from a doctor in New Zealand to say that I, the father of the child, was staying in New Zealand for medical treatment. For this kind of thing, Grant, less than fifteen minutes on foot from where I'm living with my parents, is my natural choice.
I also deal with the oncologists at Auckland Hospital in the city of Auckland, one ferry ride across the harbor from Devonport, but you can't just drop by and see those guys. You can get help on the phone if you need them, though, and I have the contact details from a ward which does cancer-related stuff, a ward you can call after hours regardless of the time.
My wife, as I write this she's home with our daughter, who has come down with chickenpox, despite having been vaccinated, and has, consequently, been exiled from the daycare center.
I gather that my wife's workplace is not very happy about this, and the plan, I think, is for her country mouse mother to come in from the outback to the city of Yokohama, our part of Japan, and look after the child.
My wife is a bureaucrat, one of the people who make the wheels of the world work. She is employed by one of the local government outfits which run life down at the local level in a government system which is, I believed, modeled on the system of prefectural government which was developed in France.
The metropolitan area of the Japanese province which is known as "Tokyo" is divided, for the purposes of local government, into twenty-four wards, each of which has its own government outfit elected by the people.
Each ward raises its own taxes based on your income, taxes which are additional to the national taxes, and the wards also run health care insurance, pensions and so forth.
My wife is in the tax department, dealing with pensions. Not a fun job. She used to do library work for the same local government outfit, but the hours are unworkable if you have a small child, since the libraries are open on weekends and through into the night.
So she switched to her present desk job.
While my wife works in Tokyo, we live not in the prefecture of Tokyo but in the neighboring prefecture of Kanagawa, which includes the cities of Kawasaki and Yokohama, but my wife works in Tokyo, which gives her a daily commute of not much more than thirty minutes.
Given that my condition right now is undiagnosed, and that my prognosis is uncertain, my wife will be bringing all her paperwork when she comes to New Zealand later this month, February 2006.
I already have New Zealand citizenship papers for my daughter, and it's within the realms of possibility that my wife is going to end up applying for permanent residency and staying. Goodbye Japan.
If I am in big trouble, the New Zealand public health care system gives me my best chance of getting a decent medical outcome.
All medical care is, inevitably, rationed, in one way or another. You have an insurance system but you can't afford the insurance. Or you did buy it but it ran out. Or the care is free but, naturally, there's a waiting list. Or the system delivers therapies free but only some therapies, and the drug needed for your condition is not one of them.
I fill Grant in about the waiting list situation.
I need a medical resonance imaging scan to find out what is going on with my brain. One has been requested, but somone still has to assess the urgency of the request. There is a waiting list. The machines are very busy and to read one scan takes two people one hour of teamwork, and there are not really enough people.
The oncologist I saw in January, the man from Jerusalem I'm choosing to call Mr. Jerusalem, has assured me that I'm not going to suffer an adverse medical outcome from a delay of two or three weeks.
What could happen, if the brain cancer has come back, is that the lymphoma in my central nervous system might once again be causing a swelling of my brain.
Back toward the end of 1974, just such a swelling caused a very nasty partial paralysis of the left side of my body. But the dexamethasone, which reduces swelling in the brain, took care of that in just a few hours.
If it is swelling in the brain which has caused the present degeneration of my vision, including the loss of the central vision in my right eye, then the dex will reverse those symptoms and my right eye can be expected to recover.
The alternative is that what I am experiencing is the irreversible but probably not progressive consequences of nerve damage caused by the radiation therapy I had last year, a dose of sixteen grays to the brain.
In the aftermath of the radiotherapy, my irradiated brain is still cooking away, changing and mutating, and can be expected to do so for the next ten to fifteen years, if I live that long.
If the cancer has in fact come back, then the probability is that I will not live that long, because, as a general rule, with this kind of cancer, non-Hodgkin's lymphoma of the large B-cell variety, it is not possible to achieve a second remission.
I do have a chance of survival, but that non-zero chance of survival is sitting very close to zero.
My wife is aware of this. She was here in New Zealand with me when my radiation oncologist, at our request, laid the situation out for us.
If the cancer has come back, I will not be going back to hospital for more chemotherapy. A drug-delivery device will be implanted in the spinal area on an implant-it-and-forget-about-it basis (it can later be surgically removed, but there is no need to do so) and I will either live or die, as the case may be.
Not much use for a "fighting cancer" metaphor here. You have this implant, and it either works or it doesn't.
I've had more than a year to process this, and I continue to process it as I go along. In conjunction with the work I'm doing on my WITCHLORD book, I'm also working on a book of poems called THE DEATH OF BIRDS, basically a book of death poems.
I went out for a walk with my parents the other night and the sky was pink, in all probability because of massive bush fires in Australia, which is three hours distant by jet plane, far across the ocean.
My mother talked about the fire, and about the birds. The people are told that the fire is coming and so they get out. But, she said, nobody tells the birds.
I write this in a house asleep, the hour not yet seven in the morning. I have been up since five, and I am ready for the day of work ahead, starting with another stint on the proofreading of THE WITCHLORD AND THE WEAPONMASTER, the ruthless hunt for the misplaced period.
To live or die this year? I don't know, and, right at the moment, it does not seem to matter.
I am the shark, the dynamo, the writing machine, perfectly balanced, moving forward with the rhythm of my work, adapted to my condition, making out okay with the computer with my magnifying glass at hand to throw into play when necessary.
The total writing machine.