MY FUTURE REVEALED:
LIVE WITH EYE DAMAGE
OR DIE OF CANCER
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.
2006 March 3 Friday
My future revealed: live with eye damage or die of cancer.
That was what I was expecting to find out when I attended an 0830 appointment at oncology today at Auckland Hospital here in New Zealand.
The words "or die of cancer" are a bit gloomier than the situation requires, since there would be, if cancer had returned, a slim but non-zero prospect of survival, providing that it were technically possible to provide treatment at this stage of my disease within the public health system.
Which it had indicated to me earlier might or might not be the case ... my oncologist would have to do some research and come back to me with an answer.
So what did I do in the build-up to the appointment?
Well, ate bananas, ate icecream, ate gingernuts, ate pretty much anything I could get my hands on, my appetite stoked up by the dexamethasone that I have been taking to keep any swelling in the brain in check, just in case the brain cancer has returned.
I noticed that after only about a month of taking eight milligrams of dexamethasone a day I am already experiencing (at least, this is my subjective impression) a degree of weakness in the major muscles of the thighs, which this drug is notorious for attacking. (Not all muscles just, weirdly, the major muscles in the upper arms and the upper legs.)
Ate a lot, worked a lot on my computer, went to the optometrist to have spectacles made optimized for reading fine print, and attended a family brunch at my sister's place on Sunday 26 February.
The brunch was described by one of the participants as "the Alcoholic's Anonymous failure party," and, though everyone else was, in fact, very moderate, I deliberately got as drunk as I have ever been in my life, ending up a little unsteady on my feet, which took three or four glasses of wine. Coffee and chocolate on top of wine, that's a great sensation, on occasion.
Retrained my brain to play Solitaire and occasionally win, not exactly the most difficult intellectual task in my life.
With that preamble, Friday arrived, and I went across the Waitemata Harbour by ferry from the North Shore City suburb of Devonport, where I am living with my parents, to the city of Auckland.
A bus at about 0730, and I was at the hospital with plenty of time to spare.
Oncology is a kind of laid-back place, no sense of crisis about it. Cancer, as a rule, moves very slowly, and is not a crisis. The exception is if you see an unexpected black spot on your skin, which should be taken to the doctor today, since it might be melanoma, an extremely dangerous skin cancer which can take you down and kill you in a matter of weeks.
But, generally speaking, cancer does not have the drama of a heart attack. What you get with this disease is leisure, quite possibly more leisure than you have ever had before in your life.
Back some years ago I decided, the hell with this writing life, it hasn't worked out for me, so I'm going to have a career, a married life, wife, child, household responsibilities, go to work, pay my taxes, forget about this novel-story-poem business.
But having cancer canceled that life for the year of 2005, and, naturally, with no other options, I moved right back into writer mode, becoming the total writer and producing three books in that year, the fantasy novels BAMBOO HORSES and TO FIND AND WAKE THE DREAMER and the medical memoir CANCER PATIENT.
Then I found myself unable to return to life and work in Japan in 2006 because I needed to wait for a diagnosis of my fresh problem, a deterioration in my eyesight to be attributed to either irreversible but non-progressive damage caused by radiation, or, alternatively, by the return of cancer.
So by this point 2006 has already become the year of five books, the fix books being my poetry collection ARC OF LIGHT, my short story collection THE SUCCUBUS AND OTHER STORIES, the three books of the OCEANS OF LIGHT trilogy (which I did not write in 2006 but did publish, as I had the computer files for the books all ready to go), and, on top of that, a second edition of THE WITCHLORD AND THE WEAPONMASTER, which had been out of print for some years.
So I, of my own free will, more or less made a decision to abandon the writer dream and try my hand at becoming what we might call a normal person.
Instead, I've found myself in a totally abnormal situation, living in large measure without sleep, working alone through slabs of the night while everyone else is asleep, taking just enough dexamethasone to feel balanced and businesslike, the transitory euphoria phase a thing of the past and extreme irritation not yet having set in.
And an unlimited work schedule ahead of me, with plans including a new edition of my science fiction novel THE SHIFT, which has been out of print for twenty years, and new editions of the two books in the CHRONICLES OF AN AGE OF DARKNESS series which are also out of print, THE WORDSMITHS AND THE WARGUILD and THE WORSHIPPERS AND THE WAY.
And a book of death poems, THE DEATH OF BIRDS. And an include-everything-not-included-elsewhere book which I'm calling THIS IS A PICTURE OF YOUR GOD: A HUGH COOK READER.
Plus I have clear concepts for the next two books in the TALES OF OOLONG MORBLOCK series, if I get that far.
So, that's the preamble.
And now, what actually happened at the appointment? What was the result of the MRI scan? Radiation damage or a return of cancer?
It turns out to be a trick question, one that quite simply does not have an answer, at least not for the moment.
I went to my appointment this morning with Dr. Oncologist with the stone cold knowledge that, one way or another, I would get an answer, good or bad. But that is not what happened, not at all.
It turns out that the MRI scan was clear and shows no cancer in the brain, certainly not the "large mass" that Dr. Oncologist indicated he had been expecting.
On the question of nerve damage to the optic nerves caused by radiation, the MRI is, apparently, silent, not the kind of diagnostic tool that can address that issue. I am scheduled to see my ophthalmologist, the eye surgeon who did the cataract surgery on both my eyes, on Thursday 9 March, and Dr. Oncologist says he will be interested in anything the ophthalmologist might be able to tell us.
However, something bad has definitely happened to my messed up eyes, and my subjective impression is that the left eye has been getting worse, cloudier than before, so whatever is happening is quite possibly progressive.
The MRI having come back clear, and yet vision problems existing and possibly worsening, Dr. Oncologist's next move is going to be a lumbar puncture, otherwise known as a spinal tap, which I will have on Friday 10 March.
One possibility is that the cancer has returned but not in the brain itself, where the MRI would presumably see it, but in the meninges, these being the sack of fibers which contains the brain and the spinal cord.
By taking a sample by means of a lumbar puncture it will be possible to biopsy the area of concern and, maybe, get some kind of result. All going well, a result will be ready by Friday 17 March, which is the tentative date for my next appointment with Dr. Oncologist.
Dr. Oncologist's registrar will be doing the lumbar puncture at oncology daystay on the 10th, something I'm not looking forward to. At this stage I've had, if memory serves, seven lumbar punctures, one a biopsy, six to administer a chemotherapy drug called Ara-C directly into the theca, the sheath which contains the spinal cord. I really don't like this procedure. This is, after all, my spinal cord which is in play.
Even once the lab results from the biopsy come back, I have no guarantee of an answer.
The next step could be, possibly, something called a PET scan, a positron emission tomography scan, depending on whether Dr. Oncologist thinks there would be any utility in doing the scan.
Apparently one of the chemicals significant to a PET scan is glucose, and, because the brain continually metabolizes glucose, the brain is a natural hot spot as far as glucose is concerned, so there might be a question mark over what the PET scan might show.
Additionally, PET scans are not available in New Zealand, but apparently one can be had for two thousand dollars, presumably in Sydney, Australia, three hours away by air.
Following the meeting with Dr. Oncologist, I felt totally calm. After all, if you've been preparing yourself for some days for the possibility of getting handed a "die quite possibly soon" card, a "no answer yet" offering should be in the realms of the manageable.
However, that said, later in the day I realized that my stress levels were peaking alarmingly. This is a kind of replay of 2004, when I was going to hospital time after time for test after test and not getting any answers.
The bottom line is that the machineries for interrogating the body are quite simply not very sophisticated, not in relation to what it would be nice to be able to know, and know right now, thank you very much.
The happy result of the day was that I was able to get the paperwork Thai Airlines has, very reasonably, been asking for in order to process a refund for the flight I cancelled, the required documentation being a photocopy of my passport, a medical report of some kind, the MRI report being the first such report that has become available to me, and a letter from an oncologist, which Dr. Oncologist provided, saying I need further tests.
I did not buy my ticket online but went to the House of Travel locally here in Devonport, and, when I had to cancel the flight I had booked back to Japan, I was glad to be able to deal directly with the travel agency, as they were helpful and friendly in sorting out the problem for me, and waited patiently until I could come up with the paperwork.
To wrap up, I give the text of the interpretation of the magnetic resonance imaging scan.
"Indication: Primary CNS Lymphoma Treated with Methotrexate. Now visual symptoms. ? relapse.
"Technique: Saggital T1, axial T2, FLAIR, DWI with post contrast sagittal and axial sequences through the brain.
"Findings: Comparison is made with the previous study performed on the 10/11/05 [10 November 2005].
"In the interim, there has been a very slight increase in the size of the gliotic cavity within the right superior frontal lobe of uncertain significance. However, there is no significant enhancement associated with this focus or elsewhere within the brain. No significant change is demonstrated elsewhere, in particular the white matter change surrounding the lateral ventricles and occipital lobes. There is no evidence of acute infarction or intracranial haemorrhage.
"Interpretation: no significant interval change."
I interpret this, rightly or wrongly, as meaning that they considered the possibility that I might have had a stroke and concluded that, no, I didn't.
The good news, then, is that my brain is, as far as the MRI scan can tell, as normal as can be expected under the circumstances, not on fire, not infested with Argentinian ants, not jam-packed with melting ice cream. Could be worse, and let's be thankful for small mercies: no stroke.