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 went through an alarming phase a few weeks back when I kept involuntarily biting the inside of my mouth, my teeth misbehaving. That seems to have been a transitory phase, something over and done with. A hint of the kind of misbehavior the brain might get up to, miscalculating and failing in various ways.
In practice, the immediate consequences of brain damage, right now, are blurred vision, a loss of central vision in the right eye and a generalized haziness in both eyes, together with a loss of the visual field in the upper left quadrant of each eye.
Getting no worse, as far as I can tell, and, although it is impossible to judge accurately from my own subjective position, it is possible that the visual field defect may be in the process of gradually clearing up.
There are three explanations for this obvious damage: (a) an irreversible but self-limiting damage process to the nerves inflicted by last year's theoretically therapeutic radiation; (b) pressure put on nerves by a return of brain cancer; or (c) logically, a possible combination of both (a) and (b).
My oncologist told me (a) and (b) but logic necessarily forced (c) into the play of my considerations.
To find out what is going on, I needed a magnetic resonance imaging scan, which the public system, presumably prodded hard by the oncologist who heads the team dealing with my case, finally delivered one, in a reasonably timely fashion, on Wednesday 15 February 2006.
It would have been possible to go private and get an MRI done a few days faster, but my eye surgeon had counseled me to do no such thing, saying that the key point would be not obtaining the MRI scan but interpreting it. Locally, it seems, genius in interpretation lies with the experts working for the public health system.
They work in pairs, it seems, and, if memory serves, it takes a team of two a couple of hours to work through a set of brain images and to figure out what has happened.
They will be comparing my new scan with one or more of my old scans, all available in computerized form, but, given that the brain has not only been damaged in various ways but is also, in the aftermath of radiation, in a never-ending state of dynamic changes, always and inevitably changing from one scan to the next, arriving at a diagnosis is not going to be easy.
But I am assured that it will be done.
If it's only radiation damage, then I will be back to Japan. If so (and even if not so, in fact) I will be making another trip to the optometrist to get a third pair of spectacles.
My first pair was a set of progressive lenses which were a poor and partial solution, engineered as a kind of rational compromise for an eye incapable of adjusting to different distances, and, therefore, optimized for none.
For computer work, a pair of spectacles adjusted precisely to the computer-working distance I took my computer to the optician to be sure of getting it right has proved entirely satisfactory for my private purposes.
But, at the distance of my outstretched arms, it is impossible to sharpen up the image to pull the smallest fonts into focus, so I still need a magnifying glass to read the details of some pull-down menus which cannot be adjusted.
This is fine for me, but not really acceptable in a corporate environment.
Also, although I can pick my way through a newspaper without the magnifying glass, it is a slow and difficult task.
So I figure that my next step is going to be a pair of spectacles optimized to sharpen up fine pint at whatever distance that is best done, probably where a book would sit if I held it in front of me to read it.
Then, if I ended up working at a computer in some glossy corporate environment in Japan, a land where appearances are important, I could simply wear my computer spectacles and have my up-sharp-and-close spectacles sitting on the desk, and swap to these, and lean forward to study the screen, when I needed to capture fine detail from the screen.
So, if all I am looking at is nerve damage, then, given that I have been told that this damage has probably gone as far as it will, and given that my eyesight is still workable, I could be on a plane back to Japan as early as next month.
If the cancer is back, non-Hodgkin's lymphoma of the large B-cell variety, the one treatment option (which may, for technical reasons, not be available, something my oncologist would have to research) seems to be a specialized B-cell killer drug, a drug which goes through and wipes out all B-cells, good or bad: a drug called rituximab, promoted on the pharmaceutical industry website rituxan.com.
The "return of cancer" option is alive and well at this stage, but it is a possibility, not a definite given.
The ongoing expression of brain damage, however, is inevitable, part of the background of my life.
I have been told that the "moderate" shrinkage of my brain which was caused by methotrexate is similar to the shrinkage of the brain which is experienced in old age. In effect, then, the aging process has already been accelerated, and my brain is, in effect, years older than its biological age.
I have also been told that the radiation will, in the coming years, produce accelerated aging, with the result that effects that could have been expected thirty years in the future cutting in sooner.
How sooner nobody can tell, but the brain will continue to change for at least ten years, maybe fifteen, with consequences.
Some of those effects may already be with me, but it is hard to differentiate brain damage from fatigue, pure and simple.
At the moment, I am stable but largely sleepless on a dose of eight milligrams of dexamethasone a day. I have no sleep pattern left. I move forward in shark mode, feeling low-key and businesslike, until exhaustion cuts in. Then I go to sleep. And, after a while, maybe as little as ninety minutes, on occasion as two, four or even six hours, I am awake again, further sleep no longer either necessary or possible.
The good point about this is that, as a lifelong insomniac, I find nothing odd about being up and awake when everyone else is asleep. The bad point is that if this goes on for too many months, as it did last year, then I will eventually enter a zone of extreme irritation, the result of the cumulative effects of sleep deprivation.
Last year, I got thoroughly tired of being eternally driven forward by the drug, never able to blob out and relax.
Anyway, for practical purposes, I find myself, currently, in a zone of productivity, with writing projects of one kind or another stacked up waiting to be done, and with the hours of darkness, good for no other purpose, pushing ahead with my work.
The writing skills are solid.
Other things, not.
I was cleaning up unused icons on my desktop the other day and found the Solitaire icon, never used, and clicked on it. The Solitaire game opened up on the screen and I was disconcerted to find that my Solitaire concept had been deleted.
Experimentally, I pushed a king to the top of the screen. It jumped back, rejected. No, kings do not go to the top. But what does? How do you play this game?
I gave up, closed it down. Opened it up again the next day. This time, remembered. Aces go to the top.
A day had been sufficient time for my brain to recover its Solitaire concept from wherever the concept was hiding. But, initially, the concept had been deleted, which was disconcerting.
I once read a newspaper article about a navy diver who, over the years, had suffered brain damage as a consequence of imperfect decompression. The result was that he ended up with navigation problems and could not find his way home.
In Japan, back in the closing months of 2004, I had the extremely scary experience of getting lost while going home on darkened roads at night. This happened three times, the brain cancer, as yet undiagnosed, being in the process of shutting down the brain, pressure building up and squeezing nerves.
Now, in 2006, I find that my night navigation is definitely shot.
In the light, getting from A to B is no problem. But, if I am in the dark, trying to get from A to B, then I cannot match my mental map to the reality which I am trying to navigate through.
I was on my way to the kitchen, moving through the darkened house, and was convinced that I had arrived at the kitchen sink. But it was not steel but porcelain. Unaccountably, I had navigated my way into the bathroom, remote from the kitchen. I had gotten completely lost and disoriented in the darkness of what is, really, a very small and compact house.
The simple answer to this problem is to switch on the lights when moving around the house at night, which is what I now do.
But it is clear to me that I have identified the first significant identifiable outcome of brain damage: my night navigation facility has been deleted.
On top of that, my night vision itself is shot. I cannot see well in dimly-lit shops.
With optimized spectacles not yet available to me, reading for pleasure is not really an option, unless I restrict myself to large-print books. So recently I've been having my computer read to me.
I have been checking through the texts of some of my own writings by using OpenOffice 2.0 (a free office suite, roughly equivalent to Microsoft's Office suite) which can effortlessly convert a file to PDF format (FILE throws up an EXPORT AS PDF option).
Adobe Reader 7.0 can read a PDF format in a computer synthesized speech which sounds pretty close to someone reading naturally, with a surprisingly close approximation to natural intonation.
(VIEW -> READ OUT LOUD).
There are a few speaking books on CD at the library, but nothing i particularly want to listen to.
It occurred to me, suddenly, that I can make my own speaking books very easily.
Just get a plain text of a book, and there are thousands available online from Project Gutenberg, open it up with OpenOffice 2.0, export is as a PDF file, and, voila! My own speaking book, done in less than five minutes.
It is also possible to get files for a range of free books from other sources. A few years back, Baen Books was offering various read-free science fiction books, for example.
I had been thinking of possibly getting an iPod, but have rejected the idea, at least for the moment, since I'm usually working with my computer on my lap, and so can just plug earphones into the computer.
Plus, an iPod cannot read PDF documents aloud, at least not yet, as far as I know.
It occurs to me that maybe Apple or someone might give us a hand-held reader for PDF documents, a gadget into which you could load your Adobe Reader / Adobe Acrobat public document format documents, and have them played to you.
So far, I have been able to have Adobe Reader read a whole text through to me, stopping it and starting it by the simple process of closing the lid of my computer whenever I wanted a break.
But to become a proper reading technology there really has to be the capacity to rewind a little and listen again, and so forth.
At the moment, being uncertain of what the future holds, I want to push ahead with my list of writing projects as fast as possible, aiming to optimize my use of my time. But, some time, I hope to take another look at what is out there on the Internet in terms of texts.
Some years ago I downloaded quite a few books, which I still have on CD-ROM somewhere in Japan, but I never read a single one of them. Like most of the rest of the world, I don't find reading a book on a computer screen to be satisfactory. In comparison, having the computer read a book to me is a more satisfactory solution. Though, as indicated, the technology for reading PDF files is at its most primitive "works but a bit clunky" stage.
What we consumers want, I think, is a kind of iPod-sized device with PDF-reading facility with rewind capacity, easy pause-and-restart controls, speed control (from BBC ponderous to race track commentator gabble speed) and a range of reader's voices (male, female, young, old, and not just American English but other accent options also).
Meantime, I can make my own reading library, when I have time. Five minutes a book. No problem.