TWELVE HOURS DISTANT
Wednesday 11 May 2005.
My dexamethasone dose started off as eight milligrams daily and was later cut to two milligrams per day. At the end of my fifth chemotherapy cycle, on Friday 6, I was told I could taper off the dexamethasone: cut it to one milligram per day and finish completely in three weeks, which is on Friday 27 May.
For me, the dexamethasone worked wonders in that it very promptly (in just a few days) reversed my paralysis problems, allowing me to stand up without difficulty, to walk normally and to touch type. (I found it incredibly frustrating to sit down at a computer keyboard and not be able to coordinate my hands properly.)
However, it did have side effects, and for me these have been a hugely greedy appetite, insomnia, a swollen face, muscle weakness in the thighs and minor internal bleeding, the internal bleeding consisting of some nose bleeds, one burst capillary in the right eye, a patch of bruising on my right elbow at one stage, and little patches of bruising on each foot in the "V" made by the big toe and its neighbor.
Now that I'm on a pretty low dose of dexamethasone, the only steroid side effect that I'm still conscious of is that my face is still a bit puffy.
Apart from that, generally speaking I'm in good shape except that my energy levels are not high, and I don't have the stamina to walk long distances. I've been told it's probably the chemotherapy itself which is cutting back my stamina levels.
A few days ago I had coffee with my sister and, afterwards, we went for a walk along the waterfront. She was really stepping out, and I was appalled at the speed, and thought I was going to have to beg for mercy. Then she asked why I was walking so quickly, and it turned out that, as far as she was concerned, I was setting the pace.
Throughout my chemotherapy, I've been trying to do a little exercise daily, not pushing the limits but just walking to the extent that I feel comfortable. Once I'm done with both the dexamethasone and the chemotherapy, then I'll think about stepping up the exercise I'm doing.
The chemotherapy -- primarily with methotrexate, but also with vincristine and, earlier, with Ara-C -- may have resulted in a decline in my stamina levels. But, apart from that, I seem to have come through it in good shape. When I showed up for my medical check on Monday, I had one small mouth ulcer, which is probably a consequence of the chemotherapy. That's been irritating me through the week, but it's healing up nicely, and, in any case, because it's only one small area of soreness, it's not a big deal.
So, chemotherapy-wise, luck has been definitely been with me.
The next step is going to be radiotherapy, and today I got a phone call from the radiotherapy department at Auckland Hospital, trying to arrange appointments. A little difficult because the appointments have to be fitted in around my chemotherapy and my eye appointment, but it seems I'll shortly have three appointments associated with my planned radiotherapy:-
(i) An appointment at the mold room, where a mold of my face will be made.
(ii) A CT scan.
(iii) A second mold room appointment.
Back in February, when I met with two radiologists at Greenland Hospital to have a preliminary briefing on my projected radiotherapy, I was told that a lot of time will be spent precisely aligning the radiotherapy machinery so exactly the right portion of the anatomy gets zapped.
For example, the plan is (or was, back in February) to irradiate the back part of the eye (the eye being a potential sanctuary site for cancer) but not the front part of the eye (that is, not the part which includes the lens.)
My understanding is (and I hope I've got this right) that it's so time consuming lining up the machinery that it makes sense to work with a mold of the patient's face rather than with the actual patient. The mold isn't going to have fits of wriggling impatience while the experts get geared up for atomic attack.
Since I haven't seen the mold room, a mold or the radiotherapy machines (I think they were referred to in my February briefing as "linear accelerators") I'm hazy about the details of this process, but no doubt it will all become clear as we go along.
My radiotherapy, when it gets underway, will be in the form of twenty treatments, five a week on a Monday through Friday basis with weekends off, meaning it will take a month. There will be a gap between my chemotherapy and my radiotherapy, but I don't know how long it will be. I asked on Monday and was told "a few weeks", but it was not possible to pin down how many "a few" might be. It depends on how well I recover from the sixth chemotherapy cycle.
Meantime, my invalid's life grinds along in low gear. Although my stamina levels are low, I'm able to put in a certain amount of work on my BAMBOO HORSES novel on a daily basis.
This is a murder mystery with fantasy elements, the protagonist being one Ken Udamana, whose problem is to figure out who is trying to kill him before he gets killed.
Ken has a sick relative, an Aunt Chariot, and at one stage he thinks about her as follows:-
It's typical of Aunt Chariot that she should go out of her way to try to say something nasty, and I'm disappointed in her. I suppose it's naive, but I would have thought that coming down with a potentially fatal disease (in Aunt Chariot's case, a probably fatal disease) would have some kind of redemptive value. That it would widen your horizons, make you rethink your life, and make you discard backstabbing nastiness. That it would cleanse your soul as it took you into the realm of first and last things.
But apparently not.
In Aunt Chariot's case, the effect of sickness has been to make her sick. And, if anything, more self-centered and peevish than before. Illness has not helped her to transcend her limits and I suppose I was a fool to think that it would.
The above perception flows out of my own cancer experience. Early in the process, when I had the distinct impression that I was being bulldozed toward the fatal edge of mortality, I imagined that the process might focus my mind on "first and last things".
But it hasn't.
Sure, I did a lot of thinking, my mind spinning with thoughts of the past, the present and the future, but most of the thinking was on a pretty mundane level.
Sickness makes you sick. And that's all there is to it. End of story.
Meantime, ordinary life goes on.
Today I received a form to enroll to register to vote. The election has not yet been scheduled, but will be some time this year.
Registering is pretty simple: just fill in a few basic details and either post it in or hand it in at the local "PostShop", the "PostShop" being what used to be called the post office. If you haven't been at the same address for a month or if you're living overseas then they want just a little more data, and "if your house or flat does not have a street or road number" then they want a "Sketch map showing where you reside" plus some additional details. But, basically, it's a two-minute job.
Someone told me I could vote in New Zealand even if I was currently living in Japan, but it seems this is not so, because an "Information for enrolling" section tells me that you cannot enrol if "you are a New Zealand citizen who is outside New Zealand and has not been in New Zealand within the last 3 years", which I interpret as meaning that my right to vote in New Zealand would have expired after I'd been in Japan for three years - and by December I'd been there for seven years.
Speaking of Japan, while I was in hospital last week I received a letter containing some photographs of my daughter's first birthday, which she celebrated recently. A quiet affair - only mother and daughter in attendance - but baby Cornucopia was "very excited" by this affair, which was complete with cards, presents and birthday cake.
The photos made an enormous emotional impact on me, and I was really struck, in particular, by the gaudy vividness of the world of baby colors. (Things designed for babies are typically brashly colored for the simple reason that babies do not perceive color very well.)
And I liked, in particular, a "before" photo of everything (cards and presents) laid out in immaculate order and an "after" photo showing everything reduced to baby chaos.
The hospital ward is dominated by the color white. But, looking at these rainbow photos, I had the impression that I was viewing them not from a world of white but from a world of gray.
In hospital I wrote a very short simple poem called "Twelve Hours Distant". Twelve hours is how long it takes to fly from New Zealand to Japan.
My daughter's smile
Is twelve hours distant
Is as close as the doors of sleep.
There is grass in my Japan
Because I planted it:
Not for the passing day
But for a life.
In the catalog of futures
We are three.